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Pudendal Neuralgia and Pelvic Mesh: Serious Injury – Serious Decisions

greg v croppedJune 21, 2016 ~ Greg Vigna, MD, JD, is both a doctor and a lawyer who is directing his expertise as a traumatic injury specialist now to pelvic mesh injuries. This story is reposted from last October. At the time, Dr. Vigna was a sponsor of Mesh News Desk, which he is not today.

As a physician he specializes in Physical Medicine and Rehabilitation caring for patients with severe traumatic brain injuries and spinal cord injuries. He understands` the game changing effects of these injuries on the patient and her family.

He is also a Certified Life Care Planner who understands the economic cost of a catastrophic injury both now and in the future. Third, he is a personal injury attorney who only represents those with catastrophic injuries. Dr. Vigna focuses on the severe pain syndrome of pudendal neuralgia or nerve pain from injury to the pudendal nerve. One of the most read stories on Mesh News Desk is about pudendal nerve damage from mesh used for pelvic organ prolapse (POP) and stress urinary incontinence (SUI).

Pudendal Nerve, Wikipedia

Pudendal Nerve, Wikipedia

 

Q: What brought pelvic mesh pelvic mesh injury cases to your attention?

A:    Pudendal neuralgia (PN) is a catastrophic injury as damaging to the life of an individual as paralysis from the waist down. As a physician I recognize there is a great cost to a catastrophically-injured person and their family, psychologically and economically. The purpose of going into TVM caused pudendal neuralgia is this is one of the most difficult, expensive disorders one has to live with. The lifetime cost in relation to treating pudendal neuralgia is easily $1.4 million to $2 million over a lifetime.

I see spinal cord and brain injuries all the time. A person is hit on the freeway by an uninsured motorists and suddenly they are no longer economically viable. Their families are now indigent. Here we have a similar situation. The purpose of product liability law is to cost-shift to those better able to handle the cost. In this litigation for the worst injured there has not been a successful cost-shift. These women are disproportionately left to become indigent. I’m pleased to say there are attorneys willing to step up to represent all, including the 2 percent who are severely injured.

image of pudendal nerveQ: It’s fair to say you are not trying to represent or help all injuries resulting from pelvic mesh implants?

A: I believe one to two percent of women involved in this litigation have a pain syndrome consistent with pudendal neuralgia. Simply, there are only a few medical conditions as destructive to an individual and the family unit as a pudendal neuralgia. It is a horrendous pain syndrome that interferes with any meaningful mobility and interferes with sexual, bladder, and bowel function. As a physician who sees over ten spinal cord injured patients a day, without hesitation I would rather be paralyzed from the waist down than have what these women have.

 

Q: To what extent does the POP and SUI mesh surgery and the trocars play in causing pudendal nerve injury?

A: To date there has not been a trial that highlights pudendal nerve injury other than Linda Gross trial. In pelvic organ prolapse surgery (POP) there is a blind component, which offends common sense.   I’m more concerned with the word ‘blind’ than the use of trocars since ‘blind’ should not be in the same sentence as the word surgery. There are certainly anatomical variations in humans and even a properly placed device will come dangerously close to the pudendal nerve. There are pudendal neuralgias (pain) in appropriately positioned devices that may directly injure the nerve or over time will be pulled by traction as well as scar tissue from the foreign body response that causes entrapment and nerve damage.

Dr. Mario Castellanos, a urogynecologist specializing in mesh related pudendal neuralgia, published a study in 2012 that described the anatomic basis of pudendal neuralgia with the JNJ Prolift. This study shown that the arms of the device came within a centimeter of the rectal branch of the pudendal nerve.   There are no treatments for that damage. They have intractable rectal pain and dyspareunia and there is no decompression surgery that deals with the rectal branch. In SUI, the literature is clear, there is a six times greater chance of damage with any sling device that offends the obturator membrane.

TVT-O, Levin Law

TVT-O, Levin Law

There is a busy pain pelvic pain clinic in Phoenix that has only seen one case of a severe pain syndrome from a retropubic sling (TVT). All of the rest are from the TVT-O. Over time, I believe transobturator slings will cause more damage than POP devices. The FDA still has not moved on transobturator slings. Over time the litigation process will end transobturator slings. If not, I will sue them into perpetuity.

 

Q: Are they defectively designed?

A: Yes. When the obturator membrane is involved the obturator nerve and the pudendal nerve are at risk of injury, both acutely and over-time. They’re trying to make it smaller with less mesh, to hook onto the membrane but still these devices such as the mini-arc single incision device are all defective.

If you are going to ask one question, of your doctor who suggests mesh, I’d ask why not use the retropubic sling (TVT) versus the ones that offend the obturator membrane? If they say with the retropubic sling there is a potential of puncturing the bladder, those issues are easily dealt with because the bladder heals but nerve damage is nerve damage. The catastrophic pain syndrome that turn women into train wrecks are from the transobturator slings.

 

Pudendal Nerve, YouTube

Pudendal Nerve, YouTube

Q: What are a woman’s chances of recovering from pudendal nerve damage?

A: If a pudendal nerve is entrapped, six months after decompression I can predict what kind of life care needs a patient will have. I’ve had clients who have improved; they can function and sit. My goal is to educate women to empower them to get the care they need to demand from their doctors the care they need and deserve. With education, they are empowered to ask their attorney if this is a situation that would require individual litigation. And if those attorneys want to proceed with individual litigation or meaningful settlement discussions, I can help with case management, ensuring the life care plan is adequate by reviewing the life care plan and critiquing it. I am offering that as a non-consulting expert through my company Litigation Support Consulting Service, LLC.

 

e book coverQ: What led you to Dr. Hibner who you did the e-book with?

A: Simply he was the only physician at the time providing what I believed was a rational treatment for pudendal neuralgia. The general tenant is that one must attempt complete mesh removal of the device both vaginally and abdominally with the Da Vinci Robot. If pain persist that is consistent with pudendal neuralgia there must be a diagnostic block and then pudendal neurolysis (or decompression) if the nerve is found to be entrapped in surgery.

 

Q: In general, how do you see this litigation going?

A: First, as a physician I must say the medical community has failed in mobilizing to protect and treat these women. There has been an utter lack of leadership from the American College of Obstetricians and Gynecologist. Simply by making a mandatory Continued Medical Education requirement for clinicians to participate in that describes the symptoms of pudendal neuralgia could have saved significant distress for women turned away by uneducated ears. To date I am unaware that American Medical Systems, JNJ, Boston Scientific, and Caldera informed their implanting surgeons of the symptoms of pudendal neuralgia which is clearly the most severe medical complication from both a properly placed mesh device or a malpositioned device which is an expected outcome of the flawed design.

Second, it is an impossibility to provide equitable compensation to everyone involved in an aggregate settlement of this magnitude. That being said, for the most part the settlements to date have done fairly well for 97 to 98 percent of the injured women understanding the cost and delays of individual litigation. I must clarify, that as a catastrophic injury physician and attorney I care most about those permanently disabled, who represent the 1-2%. These women with pudendal neuralgia are at risk of being left behind to become indigent.

 

screaming woman jade r meshQ: Why do you say they don’t provide for the most injured?

A: To date, disappointingly, there has not been a case go to trial with what I would determine to be an adequate life care plan for a mesh injured pudendal client. That being said, the Linda Gross vs. Ethicon case, medical care was awarded at $1 million over her life expectancy and she had pudendal neuralgia. The settlements to date are a fraction of that amount. I must state I am most concerned for the most injured in this litigation.

Life care plans are individualized and designed to help provide all necessary and appropriate medical care and non-medical services for the rest of her life. If she can’t manage around the house, if she can’t work in the yard, cook, clean, and play with the kids she is left with guilt because she cannot fulfill her role as a wife and a mother. We’re trying to take the burden off so she can assume the role with the help of monetary awards.

 

Q: Are you able to operate on nerves so she has a semblance of a normal life?

A: A lot of women who have ongoing pain with pudendal neuralgia go to a consultation with a pudendal neuralgia specialist such as Dr. Hibner and Dr. Castellanos and get a block that provides pain relief for a short time. Some have lasting improvement for 4-6 months and they simply have another block for ongoing symptoms. But for the women who are impaired with pain, they are candidates for a neurolysis. That procedure involves her lying flat on her stomach and cutting through a portion of the sacrotuberous ligament to expose the nerve. If it is entrapped, they decompress it. If they find retained mesh and scar tissue then they decompress. Its nerve surgery and there are only two doctors in North America, Dr. Hibner and Dr. Castellanos who can deal with this certain complication and mesh.

Burch Procedure

Burch Procedure

 

Q: Why aren’t there more doctors to address this condition?

A: PN was so rare there are only a few centers that would address it. Pudendal neuralgia would occur in people who would squat a lot. They took care of this at the Mayo Clinic with Dr. Stanley Antolak and at Baylor Medical Center there was a program. Also at Johns Hopkins. These physicians went to France where they studied pudendal nerve surgery at Nantes. When this mesh device hit the market with no regard for the nerves of the pelvis it created a whole generation of women with PN. Simply our medical system was completely unprepared to handle it. Sadly our medical community still does not understand it.

The American Academy of Ob-Gyn should have made everyone do a course on pudendal nerve injuries. The companies that sell pelvic mesh should have made sure every implanting surgeon was educated on the worst complications of the device, which is pudendal neuralgia. Basically these women are going to surgeons who don’t understand the symptoms.

I assist women on finding a doctor with the skills to diagnose, then assists them to find a physician who can treat. Another thing that’s important is that the ‘diagnosis of chronic pelvic pain’ will often be denied SSI disability without the specific diagnosis. I’ve never had a client with pudendal neuralgia denied earned disability benefits.

 

Q: How are you handing your pudendal damage cases?

A: It really depends about how they are progressing with their treatments. I am optimistic that many of my clients who have been unable to obtain the care they need because of financial constraints will have greater opportunities to afford necessary care because the lending community is now understanding the value of pudendal neuralgia. It is difficult to devise a valid life care plan when care has simply not been obtained. I have women that simply in good conscience I will not recommend any type of binding arbitration going forward unless similarly injured women receive favorable outcomes. Unfortunately, to date, there have been little precedent cases to determine the market value for this particular injury.

 

greg and bioQ: What is your assessment of the legal representation overall to date? Are you optimistic about the future?

A: Yes. The leadership level attorneys understand that they must represent everyone on their docket. They are asking for my assistance as a medical expert to review their complex cases that have symptoms and disability that would suggest a pudendal neuralgia. They are asking me to develop life care plans for their clients and analyze cases.

The path to compensation for the worst injured is perilous but for those with pudendal neuralgia there is little else to lose. Signing the Settlement terms as it stands currently affords them a lifetime of being a medical indigent. I must say that any device used for Pelvic Organ Prolapse and any Sling that offends the obturator membrane is unreasonably dangerous. The medical evidence is clear. A docket of 400 to 700 pudendal neuralgia clients is obtainable if the leadership in this litigation works together and provides a path for a timely resolution for the worst injured. The Defendants do not want to see a pudendal case in court since there is simply too much for them to lose.

Regardless of the numbers, I plan on suing the manufacturers of the transobturator slings into perpetuity until the manufacturers understand that it is not in their financial interest to continue on with the device or the FDA rings the bell with a warning to allow the manufacturers of the device to hide behind an ‘informed’ consent.

I offer services for attorneys who have or may have pudendal clients and I represent women co-counseling with leading firms on pudendal clients. This implicates all manufacturers. I’m fortunate to have met capable attorneys willing to represent pudendal clients who might decide that they must go down the difficult and perilous path of individual litigation against a pharmaceutical company.

I’m there to help women in any capacity. I’ll help their attorneys. I want women to get the care.   #

 

LEARN MORE:

Drs.Vigna and Hibner e-book on pudendal nerve injury.  TVM_Ebook_Dr.Vigna

The following articles assisted a woman get the diagnosis and for her disability hearing. I send the below articles to every woman who calls from the TVM123.com website.

Most doctors cannot treat pudendal neuralgia:

http://tvm.lifecare123.com/pudendal-neuralgia-treatment-before-and-after-the-mesh-debacle_9000.html

 

Pelvic mesh kits cause pudendal neuralgia:

http://tvm.lifecare123.com/seek-a-rational-comprehensive-treatment-for-your-mesh-related-pain_8995.html

 

Myofascial Pelvic Pain Syndrome:

http://tvm.lifecare123.com/pudendal-neuralgia-vs-myofascial-pelvic-pain-syndrome-mpps-vs-both_8770.html

 

Use of Botox in management of pelvic pain:

http://tvm.lifecare123.com/the-clinical-use-of-botulinum-toxin-in-the-management-of-pelvic-pain_9002.html

 

Tight Clothes and pelvic pain:

http://www.prnewswire.com/news-releases/vaginal-mesh-implants—can-women-wear-tight-pants-204711421.html

 

Mesh News Desk, March 2013, Pudendal and other Nerve Damage http://meshmedicaldevicenewsdesk.com/pudendal-and-other-nerve-damage-posterior-femoral-cutaneous-ileoinguinal-and-obturator-in-the-transvaginal-mesh-patient

 

243 Comments

  1. kitty says:

    JANE. THANK U SO MUCH FOR THIS.

  2. Lara says:

    A very erudite and eloquent article – the best description of PN and how it is caused by some pelvic meshes and why it cannot be treated. This article is what that every doctor and every patient considering transobturator mesh should read. Also every doctor who has an existing patient with transobturator mesh MUST READ THIS.

    If you are In New Zealand battling it out with ACC, print this out and send it to ACC and to your doctors – maybe then they will understand what you are going through and maybe then they will pay you out and give you injury compensation.

    • anonymous says:

      From personal experience however I can tell you that the decompression surgery does not always help there is only a 33 percent chance of getting better unfortunately some like me will never be better but I don’t think any of the medical companies get it yet the lives they destroyed completely isolation we live the knowledge that you will live like this for the rest of your life but I don’t think any of the medical companies get it yet the lies they destroyed completely the isolation the knowledge that you will live like this for the rest of your life I don’t care if it’s 5 years 10 years 20 each day seems like a year

      • Greg Vigna says:

        1/3 Better/1/3 no change/1/3 worse. I tend to believe the 1/3 that get worse either have dual lesions both proximal where decompressed and distal or the nerve is so far damaged that it just is basically medically futile. Options include stimulators, botox 2-4x per year, intermittent blocks, ketamine.

        Just breaks my heart to see the destruction but these options must be included in the life care plan for those at the end of the treatment road.

        GV

        • Michelle says:

          I’ve been with a company doing MDLs for about 3 years now and I originally had mesh put in me in 2010, then in 2014 I had finally had a dr notice I had erosion of the mesh and I’m not sure if she removed all or just some but I know the arms are still in there. Since then I still have issues and pain and am still seeing this dr. She just recently told me she believes it’s pudenal nerve damage caused by the arms and I am waiting on a pain management dr about some sort of “block” I would assume this is what you are talking about. I’ve underwent several different types of treatment options from meds to those injections which I might add hurt something awful when receiving those injections. This is time consuming and I’m pretty tired of dealing with this day in and day out. Sitting for too long is uncomfortable but then again standing for too long I get a swollen rectum, sometimes bleeds and had to describe stabbing pains in my rectum along with the other type stabbing pains I get up front in my pelvic area whether I’m sleeping or walking or sitting. I have many different unusual or I would say I don’t understand why pains/spasms. Should I be getting an individual lawyer and if so, is it possible when i filled out all the paperwork a few years ago with the MDL lawyers? Every time I call to update them on my dr visits, they give me the same “canned speech” that I swear they read over the computer screen and sometimes I wonder if it’s ever going to be resolved.

          • Jane Akre says:

            Michelle- who is your law firm. For their 40% you deserve more…. please advise here.

          • Michelle says:

            Saiontz& Kirk and Douglas and London. One of them is working with the other one, I’m not sure which

          • Lori says:

            I have PN also. My mesh attorney is gathering all medical information that is related, including PN, since I had damage from the placement of the arms as well.

            Make sure you keep all of your medical records, including your PN related stuff. We are considered to be in a higher risk.

    • Greg Vigna says:

      For the transobturator slings they need to remove not only the vaginal component but the mesh in the groin because the foreign body can case tightness of the compartment/obturator internis than is adjacent to the pudendal nerve. Not to mention direct or indirect damage to the obturator nerve.

      For those who don’t improve nerve block, decompression, other options.

      It is just a brutal device.

      • Jane Akre says:

        A settlement number of $2,000 after legal fees and liens is NOT going to cut it… especially when you are signing away your rights. Who would do that?

        • Barb says:

          Jane there are actually $2, 000 award settlements being taken by Mesh injured woman?? What company do you know?? This is just not come close to anything fair!!!

        • jade says:

          Jane – This was a significant and powerful article. I respectfully request that you credit my artwork as you have done in the past by noting that it was submitted by me. I know this was obviously a oversight with the schedule that you must keep in reporting on this breaking news. I am thankful always for your on-target journalism and your help to the enormous number of women who have suffered from TVM.

      • Barb says:

        Greg, I have had 4 faucet joint injections and blocks that have worked extremely well for me, however on that note due to Medicare cut backs for these specialist so after October 1 2015 my doctor will not be taking any government assistance insurance due to the amount of money they are paid %10-%20 percent and lagging in paying on time. I’m probably throwing something at you however I was wondering what effect these products have on the sciatic nerve with numbness going down both legs. Could this be anyway associated with these products? I have 2 defective devices TVT-O and monarc sling. I just had my 3rd surgery July 17 2015 they performed 5 procedures, Laproscopic, cystocopy, hystocopy, D@C, cut out the mesh eroded in my bladder and uterous. These 2 products has caused me cystitis, over active bacteria, sever pelvic pain, several infections, septis, dropped bladder, cystocele and rectocele prolapse and back pain, SUI, and of course no intimacy, referred to PT however the place was an hour and 45 minutes away, my fear was not being able to drive, pain management, was in counseling however another throw back medicare no longer pays 100%, emotionally, mentally and physically effected! I had this done in 2008 at the age of 48. And no not one doctor will do a full removal.

        • Greg Vigna says:

          My head is spinning. Medicare is failing and it is no more evident than the cutbacks for those who are disabled. Unfortunately, my whole population of patients is disabled, being a PM&R doctor. Therefore, understand if you are unhappy with the medical benefits your receive from Government Plans…it will get worse, unless you are healthy.

          Regarding your devices, an Outside-In device (Monarc) and an Inside-Out device TVT-O on the same woman. I’m speechless.

          • Barb says:

            Thank you so much for your in put concerning Medicare and my health issues so greatly appreciated. I’m certainly not the worst injured however I’m not the least! I have yet to be told which so called category I fit in. Wouldn’t be fair to say that woman who have more then one defective device along with their injuries be put in a different category then those who only have one? We did not ask for this, I was a Realistate Appraiser. I spoke to the paralegal today she said if we do not accept our offers then we have the right for a trial however that could/would take years and very unpredictable of what the outcome could be Why aren’t the review committees whom are doctors along with the Special Master even considering all the biofilms they are being released daily in our bodies and organs? So Sir in your very own opinion that as time goes on our health will continue to deteriate? I know that those in an MDL does not get the same opportunity for the awards that plantifs are being awarded, I would think what is fair for them should also apply to us even though I understand it is very costly to go to court. If you. So basically AMS still continues to destroy woman’s lives, they still have control! Is it safe to say that once you have organ prolapse will that just continue and needing further surgery? On my surgeons paper it states that due to many complications I will never be 100%. I hope you continue with your progress your journey in suing these manufacture’s and what can be done to the FDA??

          • Greg Vigna says:

            This was for Barb:

            FDA Warning in a way protects a manufacturer because it puts the blame in the hands of the doctor via Learned Intermediary Doctrine. The Consent Process from a doctor is always flawed since patients generally believe doctors. Until a consent has a destroyed pudendal client on Video Explaining how a 20 minute procedure destroyed their lives Consent is a joke.

            The only way to stop this is to Sue Them and line up 200 pudendals on a docket. The manufacturer’s Shareholders will simply freak out when they see the destruction. They need to see the pudendals.

  3. Linda Karen Miller says:

    Yes I know all this pain so well I’m in so much pain that I lay here praying to die!

    • Greg Vigna says:

      I’ve heard this too many times. My Pudendal Life Care Plans include a MMPI and a psychological interview via Skype or FaceTime. The MMPI stands up to forensic attack and supports the findings of the psychological interview. I keep my Pudendal Life Care Plans in my family. My wife, Angela is a Psy.D who does the testing, interview, and report. Every pudendal patient needs ongoing counseling, psychological support, and psychiatric follow up to their life expectancy. It is just too much for any one individual or family of that individual to support. Just too much.

      GV

  4. anonymous says:

    Oh my god doctor finally someone that states that the way it is I do have pudendal nerve damage I have had the decompression surgery and it has not helped at some point I have to understand this is my life but it’s been part very hard I lost a marriage and most of my family is going on with your life while I sit and wait wait for sweet death hopefully no one understands the pain that we have to go through daily what we have to learn to deal with daily and most of all I don’t think the attorneys actually did it because of the amount of the settlement that we are offered it is a slap in the face I’m giving up on this life I just survive day today there’s nothing else to do but hope for tqhe morning if I don’t wake up but I know that’s going to be a while then I just have to learn how to survive but thank you for speaking the truth that says volumes it is me painted in black and white please attorneys please AMS hear our voice to this doctor’s expertise

    • Greg Vigna says:

      Pudendal neuralgia, especially those who have proceeded with neurolysis (decompression) are built for individual litigation. Unfortunately to date, your case and all the others who did not respond to decompression has not been presented in court. Kills me because these defendants need to see a dynamite life care plan supported by the world’s pudendal authorities that will make them vomit. If they see a life care plan….pudendals will have a unified voice….and the manufacturers shareholders will also.

      • Disgusted says:

        Are these “life care plans” available even if you have another attorney? I’m confused about how this works. I know you said you’ll work with whomever to whatever degree the need. What if the attorney isn’t on board with this? I’m currently trying to find a doctor for pain that never stops. I get the run-around. I’m finding many pain centers are now saying they don’t work with pelvic pain. What is going on??

        • Greg Vigna says:

          A Life Care Plan is created for the purpose of litigation. Sort of a position piece regarding your future damages for medical and non-medical care to your life expectancy. It is used for the purpose of settlement talks, mediation, and ultimately a jury trial. I am doing a pudendal life care plan now (finally). I am retained by lawyers as an expert. Unfortunately, most attorneys wait until the last second to get a life care plan. The best life care plan is one that is developed overtime as a client is actively case managed during their care, so the treating physicians support the various aspects of the life care plan so I don’t become a ‘hired gun’. For example a woman needs botox 3 x a year and two pudendal blocks per year, the treating doctor states that in the medical record. The jury believes treating physicians more than hired guns.

          I want to assist lawyers case manage their clients medical care to ensure they are on the path to the best care, documented in the medical record, and evidenced in a Life Care Plan.

          My clients can’t have me as a life care planner because I would of course be biased. I medical case manage and will evaluate life care plans as an expert. Remember, I learned about pudendal neuralgia in 2006 from Dr. Stanley Antolak, been interested ever since.

          • Greg Vigna says:

            Life Care Plans for the worst 1-2 % need to begin now as these destroyed individuals go down the path of individual litigation.

            We will see how many calls come from the women who request/expect this from their attorneys. I have given my information to several. It will be interesting to see how many attorneys call. I have to say, I plan on doing little else for the next decade other than life care plans, practicing medicine, and suing AMS, BSX, JNJ, Caldera. Same devices & same injuries.

      • Greg Vigna says:

        UNFORTUNATELY, only a handful of attorneys have seen what a real life care plan by a pudendal expert looks like. I am available at their convenience to educate and explain. It doesn’t cost a thing to talk….the lights unfortunately are not on in the mesh warehouses. Pudendals need to demand more, I can’t do it for them.

        Damn shame.

  5. anonymous says:

    Sorry because of the narcotics I don’t speak well because of the fibromyalgia that I have developed since mesh I can’t type I meant to say I have pudendal nerve damage hopefully you can make sense out of the rest of it I apologize life is not easy right now

  6. StillSuffering says:

    Thank you Jane for this very informative interview with Dr. Vigna.

    Thank you Dr. Vigna for explaining just how devastating physically, emotionally, and financially this pain syndrome is!

    Dr. Vigna states the polypropylene mesh “may directly injure the nerve or over time will be pulled by traction as well as scar tissue from the foreign body response that causes entrapment and nerve damage.” Is this pertaining to the TVT-O and POP kits only and that TVT slings and their anchors do not? Hasn’t the TVT been found defective in design in in trial(s) as well?

    What about the chemical composiition of polypropylene mesh itself and its systemic effects on the body? What about autoimmune reactions?

    Pudendal neuralgia/neuropathy patients trully are the most horribly injured.

    • Greg Vigna says:

      TVT is defective. I mentioned the reasons in another post-below. Regarding the best slings… Simply they should be done by urogynecologist and likely the ‘old school’ procedures like fascia lat a slings are probably the safest.

      The TVT cases that likely will be litigated going forward will focus on CRPS (RSD) and the foreign body response. The local effects of the mesh will easily be show how it more likely than not cause the CRPS. Remote effects (systemic) consequences are also related but you don’t want the jury to look past the elephant in the room (the pelvic pain) and get lost in complex physiology and start debating about the systemic effects. That is my opinion.

  7. msm says:

    Unfortunately, the least injured are the majority receiving settlement offers. Those with severe and catastrophic injuries are told they’ll have to wait until the other cases (97-98%) are settled before their case will be negotiated. Perhaps the thinking is that it is better to divide up what $$$ is left over in the company’s coffers among those with the most severely injuried. I hope they have considered that those with these injuries are at the greatest risk of not living long enough to ever see a settlement while the attorneys rake in the 40% on the 97-98% that have been settled. What incentive is there for the attorneys to continue to fight for the 1- 2% left over?

    • Jane Akre says:

      The option is trial with a potential $100 million award. That is their incentive.

      • msm says:

        So many years. So many appeals…..

      • anonymous says:

        Jane, I can never say enough how much i appreciate all the information you get to us. Without this site i would never had known which way to turn. There are no words to tell you how much this site has meant to me. Thank you is so inadequate to express my gratitude to you for all you do. If it is ever possible I would like to hear from a Counselor about the effects of all of this on ones mental capability to cope with all that we have gone through and lost. As the doctor said this is a rare injury that many didnt even know could happen. Even where I live many counselors look at you and dont begin to understand the pain and frustration we live through. I know they dont know what to tell you or how to understand. You get bottled responses and they figure they have helped you but in reality they treat you as though its in your head. They dont understand that this injury can not be healed in all people. They are uneducated and as lost as most doctors are.

        Thank you again Jane. You are the voice for so many. I just wish someone who could make a difference would hear our voices.

        • Jane Akre says:

          You are welcome…. I’m so sorry. Am hearing about settlement letters coming in today…. very inadequate, insulting in fact. Adding insult to injury is NOT what this community deserves. One woman I spoke to said she is not accepting the Boston Scientific settlement.

    • kitty says:

      U are always right on msm. Hope my family fights for justice if I don’t mam e it

    • Greg Vigna says:

      Pudendal nerve injuries are easy to describe. Pudendal nerve injures are as valuable as paraplegia case to a attorney but here there is also a threat of punitives as a leverage tool. I believe AMS and others will do all they can to keep a well developed pudendal case out of sight of the jury. Unfortunately, we need to see that case.

      • Jane Akre says:

        How would a woman proceed if she is already represented? Call your office and have you work with her law firm?

        • Greg Vigna says:

          It is important to understand that I will be scrutinized going forward on the question of interference with contract if I interact as a ‘lawyer’ with an already represented woman. My stance is that a pudendal nerve injured woman needs to begin preparing for litigation now since the Settlements are rolling out. The way that is accomplished is by getting the medical care they deserve which can be achieved by active case management, and building a Life Care Plan with a solid foundation as documented by the ‘treating physicians’. If you have a pudendal neuralgia you deserve this level of care and representation. Paralyzed clients get active case management and life care planning, why not a pudendal woman. I offer those services as a Life Care Planner. If your attorney does not want to proceed with that level of service which is necessary in any catastrophic case I believe the injured woman must decide if they are being ‘warehoused’ or if they are being represented. I am available for attorney referrals for life care planning but must be careful about interference with contract.

    • Greg Vigna says:

      Ethically once you sign a client as an attorney you are bound to represent them to the finish line. Failure to do so is called legal malpractice. Failure to work up the file for those with catastrophic injuries is malpractice. Just is. That is 101 Legal Ethics.

      When I signed my pudendal clients I brought them to a firm that has the means and experience to take them to the finish line.

      • Greg Vign says:

        Again.. AMS is not going Bankrupt. If you have a serious injury and the settlement doesn’t approximate your loss. Just say no if you have the means, support financially, to go the distance, and there are no issues such as statute of limitations. I’m sad to hear utter intimidation and lies being told to the injured. Understand… You sign a client.. You need to be ready to go to the finish line.

        • Barb says:

          Dear Greg, Those of us who have signed and binded with our attorneys I don’t believe there is ANY individual litigations going on! I was told even in an MDL our cases are awarded on an individual basis based on injuries, surgeries, and life time injuries! I do have great respect for my new doctor! I have constantly asked about punitive damages that is a no go for us AMS clients because AMS has set aside a percentage of money to cover surgeries not all from January 1 2015-December 31, 2016! And not all surgeries will be covered. My greatest concern for us is we all know government insurance will continue to diminish therefore creating a rolling effect to us, I’m afraid that we certainly will be a ripple effect to the point of us having to hand out more money for our meds! At this time i’m on 2 depression meds, valuum, 3 prescripts for the bladder and pain meds–some of my meds go anywhere from $154.00-$900.00 a month. This will certainly start having an economic effect on us already on disability. I’m wondering if the doctor’s who are reviewing our medical records really understand the serious injuries done, I’m sure they will find many reasons n matter how much documentation to not associate to the mesh. And I’m looking for Doctor V’s opinion for those of us who have already had surgeries, are they going to still be following cases and what about these bio-films, what will we all endure next week, next month, 6 months?? They aren’t considering our future that’s my stake in this!

  8. Barb says:

    I’m wondering how many other doctor’s are following this page?? Why does it seem that this very educated doctor/lawyer is wiling to sue these companies for not taking these products off the shelf?? I have AMS waiting for my paper’s concerning my settlement offer I was told by the paralegal there will be no punitive damages awarded however AMS is setting aside a certain percentage NOT from our settlements to cover certain surgery’s from January 2015=December 31, 2016. When we get our packet concerning our issues the amount that will be placed on our settlement offer does not include any lawyer fee’s, medicaid/medicare fee’s we must pay! So it’s up to us to do the math?? I would think the offer sent should have all deductions taken out first. I’m thinking many may reject their offer! Thank god I just sent in all of the rest information they need! Funny I was first told since I was having surgery my file would be set aside until all information from the surgery was received however my file was not pulled. However with all my diagnosed problems including organ prolapse, septis, sever pelvic pain, all infections, being in pain management, counseling, referred to PT, no intimacy, and the not knowing of future outcome, it seems they are still not able to give me a category of my injuries.

    We who have AMS are supposed to have the packet by October 2015. Waiting to see what the outcome will be!

    • anonymous says:

      Barb I’ve been told what AMS is going to pay on is only the procedures to deal with the pain of pudendal neuralgia or other injuries. I have ask my attorney again and again what what about my disability I’m permanently disabled because of this what about the fact that I will have permanent damage to a nerve what about all the future surgeries in the PT being in the hospital almost dying from an infection after my nerve surgery what about loss of a marriage loss of a life no one seems to really care about those things all I keep hearing is how many procedures did you have that’s what the pay on which is a crock of s*** sorry for the language but I’m really sick of this I can’t even plan tomorrow until I know what’s going to happen and as far as I can see nothing good is going to happen I try to keep my faith in God strong but every day it’s a little harder I believe in God but I don’t believe in AMS are government or most attorneys I truly believe I will end up poor living in government housing on government paying my way which is not the life that I had planned I’m so sick of all of this I just wish I could go to sleep and never wake up they have destroyed my life destroyed my marriage destroyed everything the only thing I’m left with is daily pain and if I take enough narcotics to cover the pain of which is almost impossible I end up so sick to my stomach I can’t do anything where is justice in our world where can we turn to to get some help to make sure that we get the money that we need to live a standard of life that we deserve we didn’t do this to ourselves we were lied to again and again and now those who lied to us get to make the decision on how much they want to pay us am I the only one that sees something is very wrong in all of this doctor tell me what we’re supposed to do if we don’t agree to the settlement now it’ll be four to six to seven to eight years before we get even a chance to get it back then and on a few more years to go to the courts by that time I’ll be dead and with no family left to when I leave my money to everyday is a struggle just to survive physically emotionally spiritually AMS killed me and no one seems to care at least that’s how I feel god bless you all ladies I’ll keep praying because I believe in God but somehow I feel like my prayers are all for nothing

      • Barb says:

        Are you getting that information from your attorney?? The 2 attorney law firms I have have not mentioned anything of that nature. What they have told me was every surgery, any issues that we have had associated with the mesh, if we were referred to pt, if we went to counseling, any new medications, but no punitive damages that’s why AMS has set aside a percentage for those who will need surgery up until December 31, 2016.

        • anonymous says:

          Really to be honest with you I don’t think anybody knows for sure until it comes down to the point where they offer you a settlement what they’re basing it on I’ve heard so many different stories from several attorneys I’ve talked to and everybody else’s attorney I wish there was one voice but there’s not we’re all told different things and that’s what makes this even harder on us but yes I was informed by an attorney of this again I say I don’t think anybody knows except AMS themselves

          • Barb says:

            Dear anonymous I hear you on every level! No we don’t have to take the first offer however if we don’t we have the option to take our case to trial! We all live in fear, the not knowing from day to day, sometimes I too feel everyday will I wake up tomorrow?? We have been tortured since our implants, so you are right if we don’t take the offer’s which I feel we are being forced because if we don’t take he offer yes we can go to trial however the cost and the uncertainty where the jury is concerned, being cross examined by the defense attorneys and possibly being examined by their picked Doctor’s whom we are all aware by now many have been paid to say their product was proven safe with no side effects they all should be ashamed of themselves along with those who have turned their heads the FDA what gave them the right to play with mother nature with out proper testing! I know it’s hard to get up every morning however I fight really hard and try and not think of the future it can so easily consume us emotionally, mentally, spriritially and physically!! Look in the mirror everyday and smile and say this will not take my life your fighting instincts may be gone but you must rise above the black hole that many of us are in! God Bless you! CR. Bard settling cases for $67, 000 and they think that is a fair settlement?? There are going to be so many angry woman when they see the number that has been put on their case!! Why can’t they add punitive damages I think we all would be much happier recieving that amount of money and nothing less then $1 million after attorney fees, medical liens and any other liens that some may have those are the ones who will not see a penny! For those who only have attorney fees and will only have to pay back a percentage to medicare/medicaid if we all at least started with $1 we may walk away with $500, 000 certainly not enough in my book however that amount would help us out financially because it does appear that we could end up in more financial distress then ever! I think that Judge Goodwin should have set a number on those less injured, then the next categories and so on!! That should have been drawn up in the plan of settlement not to leave it up to the manufacturer’s of course they still are in control I still have faith in the Special Master since he has followed these trials in court and have sympathy for each and everyone of us!! I still am listening to the advice and information from my attorney so shall wait and see!! With so many of us who have been injured by these mesh monster devices no money can ever be put on someone’s life however if we were awarded a very fair settlement many of us would be able to gain back at least some of what we lost, but on this note remember that if any of these manufacturer’s wifes, daughter’s, mother’s, grandmother’s ect you can bet your life that those woman would not settle they would have there day in court they would be able to show as much evidence which is not always the case with woman who have gone to court! There was no restrictions put on them for sliding these devices on the shelf, so why have there been restrictions on our attorney’s for what evidence they can use in court to prove a strong case??

          • Greg Vigna says:

            I have talked with many women with pudendal neuralgia over the past few days about what to do now. I can’t talk about legal issues (I am not their attorney) but in my mind it is get the standards of care in treatments now. Request a life care plan so you understand your damage models. As a MD who is a Life Care Planner who has been an expert in this since 2006, I know what the standards of care is and I know what the treating experts will support in court. I’m a hired gun with treating doctors providing the foundation. No one in the court will know that injured woman more than me.

            My question is the following for those with Pudendal neuralgia: ,1) Are your attorneys going to individually litigate you, 2) Are they investing in your lawsuit to maximize value, and 3) Do they know what pudendal neuralgia is? That might be the first question. If they don’t know about it then what is the point of the rest……

          • Jane Akre says:

            Greg- the only life care plan I’ve seen presented at court was for Linda Gross…. she was awarded an additional million for her lifetime medical care.

      • tammy says:

        I’m all ready there I’m sick and homeless i gett ssi and i can’t aford housing so sad. I’m a faid now texas literly rane off god thesr to really come back im praying. animals are getting treated better

        • Greg Vigna says:

          The only change that will occur in responsible SUI and POP medical care will be provided by real litigation. It starts with a woman and lawyer understanding the value of the damages. This can only be done with a real life care plan, analysis of life expectancy, vocational loss, and past damages. The worst one percent deserve better. Future women deserve better. I have provided a mechanism for women to demand more, to see if there is serious representation being provided in their case. I know the pain, the broken lives, and the broken families. Time to demand more.

          • Barb says:

            Dear Greg, I have danced around the paralegal concerning this manner those who have had faucet injections that can no longer have these treatment or blocks, she has no idea what that is! And as she stated we can add any medical information that we have access to from Doctor’s. However she keeps reminding me that everything must be noted and in information that we submit. I think it’s because much documentation they are receiving are not based on doctors notes they are being supplied by clients who have stated that every injury from ear problems to artheritis which can be caused from several factors clients age would also be a factor. I hoe that all of us are only sending in the proper notification from our doctor’s. If you are guilty of sending information that is not properly documented by your doctor that is sowing down the process. I feel that these doctors who are reviewing our cases would have some type of information concerning this particular deveistating health issue. It appears to me that they are not getting the whole picture!

          • Barb says:

            Greg, I wonder if any of these manufacturer’s have caught on to the pudendal neuralgia issues?? Just by your wonderful information I’m sure many of us knew ahead of time. however for those people who have manufacturers that have not offered settlements and JNJ will be the last wouldn’t those going to court would need an expert doctor like yourself to prove to the courts the exact connection?? Judge Goodwin at some trials has only allowed certain evidence to be presented I wonder how many of thee cases would be allowed or evidence and what the plantiffs would say?

          • Jane Akre says:

            Good question. This is key- the longer mesh makers hold out and refuse to offer some reasonable settlement dollars, the worst the evidence will pile up against them concerning the extent of injuries. That is my opinion.

      • Barb says:

        ANONYMOUS, I was told by the paralegal that every operation, all injuries will be considered with a point system. I’m not being told anything about the point. How can someone award money on point systems! RE: example pelvic pain what number would be put on that a 5 worth what 200!!! This is such all BS! Afraid many will be so disappointed on our settlement however AMS is still in control has justice perceived all Americans!! I also wonder why our attorney’s pages are not even udated!! Many I’m afraid will be on the suicide step, we all are getting weaker, our hopes for somewhat a comfy future is gone. This has been an 8 year long road for myself and many of you have waited longer, why is it that when these cases have gone to court been warded money several appealed!

        • Jane Akre says:

          This completely disregards the women who have not been able to afford surgery. How many points have they accrued? They may be just as injured as someone with multiple surgeries but their inability to fund themselves counts against them.

          • Barb says:

            I fully agree with you Jane. I find such unfair justice what suffering in every way we have had to endure! Correct me if wrong woman will have to keep undergoing surgeries until all mesh is fully removed?? I didn’t have prolapse going into this but also have that as well even though it’s considered mild at sometime would’nt that need to be taking care of?? And also us still having SUI?? What are we supposed to do about that issue?? I’m currently looking for a part time job so I can stay afloat the problem is being on disability and having no references!! I was looking forward for my settlement package however not so much now!! No one is ever going to be properly compensated unless court. I have been trying to find out from the paralegal exactly what the point system is, what injuries are they considering a POINT NUMBER 2 and what kind of money would be issued! I think that these doctor’s who are reviewing our medical records I understand there are 2 panels and the Special Master will be coming across cases that they have never heard about before! Who can or has the right to put POINTS on someones life???

    • Lea says:

      The ams settlements are a joke and an insult to any intelligent woman –yes the figures quoted are gross figures so you need to deduct the attorneys fees, expenses, and the holdbacks–

      • Greg Vign says:

        Pudendal clients have nothing to lose… Attorneys will need to litigate or lose millions in malpractice. By the way for a pudendal woman all settlements will be a slap. pudendals need a defendant with check book authority looking at my life care plan or a like minded friend of mine.

        • Barb says:

          Dear Greg, I may have posted a similar post and this is what I was told by the paralegal, 1) They had no idea about the Pudendal Neuralgia was 2) I have also asked them has there been put a $$ amount on the most serious injuries including where my doctor has stated due to several complications I will never be 100% 3) Being in an MDL our cases yes are bonded together however they are being put in categories based on our injuries, how many surgeries although Judge Goodwin clearly stated he wasen’t interested on those having numerous surgeries I believe the number was 18 also I have never been told what those with more then one defective device, those of us who now have endured life time injuries, there will be no punitive damages awarded and certainly now million dollar payouts!! AMS has $1.6 billion to settle most cases. A I wrong that these manufacturer’s don’t have insurance as well to fall back on to also cover being sued? And I’m being told that the attorney’s I have are very sympathetic with their clients. Why not instead of dancing around they know basically what we will be getting just tell us what category pertaining to our documentation, why not already take out their 1/3 at least before we recieve our packet explaining everything, why isn’t there more media coverage, and why are these cowards not appologizing and accepting that it was their mistake!!

          • Jane Akre says:

            Good question about the insurance…. very good. As far as media, I believe I can chime in since I was with mainstream media for 20 plus years. They are afraid of hurting potential advertisers and J&J is a very big one. They believe the hype (perpetuated by J&J) that this is lawyer- generated greed. And they are all suspicious of mass torts because of bad publicity in the past. Some of it resulting from bad acts by lawyers. One more thing- they don’t want to discuss women’s pelvic regions unless it has to do with the cover of Sports Illustrated and the smallest bikini known to man. That’s my opinion.

          • Greg Vign says:

            These companies are liquid-deep. If a pudendal takes the settlement that is fine with me. If they want to litigate… That is also fine. It’s your decision. If there isn’t a legal argument that will keep her out of the court house and you have the legs… let’s bring it on. It’s about compensation now.

    • msm says:

      Barb, the last “paralegal” I spoke with didn’t even know that over 8600 AMS cases filed in the WV court have been settled and closed. I’m beginning to wonder if these “paralegals” are actually full-time employees of the firm or just contracted to answer calls and tell clients that their case is still being worked on and they’ll receive something soon so check back in 30 days (or something similar). If they get paid per call (and minute) fielded over several years from thousands of clients, then that paralegal is making a nice income whether they know anything about the status of a client’s case or not. To know that each of those calls will be charged per minute to the client and deducted from the final settlement is upsetting.

      How could anyone working for a major firm with thousands of AMS clients not know that nearly half of the cases have been closed? It seems to me that this development qualifies as major progress that would have been discussed within that firm among those involved with AMS clients. It should be common knowledge. I wonder how many clients have never spoken with any attorney over the years but just paralegals who aren’t even working out of that office.

  9. Disgusted says:

    Thank you Jane! Finally validation. I’ve told my family so many times I wish I was paralyzed from the waist down, at least I could live some kind of life. This hit home for them. Now they see. We’ll see what happens, and I sure hope Dr. Vigna is right that the cases will bring some form of justice. Of course, not the kind that will restore our lives. THANK YOU DR. VIGNA – KEEP SUING THEM UNTIL THEY LISTEN!!! Thank you for treating us as women, not cattle.

    • Greg Vign says:

      Barb… Good point. My clients with pudendal neuralgia will proceed with documentation to go up the ladder in compensation. Those with the legs to make it to the finish line will be vigorously litigated. Their Life Care Plans will be as good as the ones I’m preparing for the like minded attorney who have called me. Things are improving… Give me some time.

      • Barb says:

        Thank you so much Greg! You are truly a doctor who gets the whole picture! I know you are working truly from your heart and I’m sure many of us here a really grateful for you your amazing knowledge and as you can see many of us here has done much research and seem knowlegdlable I’m truly blessed for your insight. However it appears to me not many attorney;s are too informed about these dangers I trust in you things will get better!

      • Barb says:

        Thank you so much!! We can only pray they have extremely well informed doctors who are reviewing our cases twice!

  10. Bejah B says:

    Wow, Jane. This is a stunning piece of journalism. Bravo to Dr. Vigna for this courageous and masterful stance. I think he just turned the lights on in the building. I am at long last speechless.

    Bejah

  11. Stopmeshimplants says:

    Thank you, Jane. More information for all to better understand our mesh injuries.

  12. Ruth Olson says:

    Absolutely brilliant article, thank you so much! Hard truths–something that will surely printed many times and shared widely with disbelieving doctors. My only concern is the implication that the retropubic TVT does not cause pudendal damage, which it does, though obviously less frequently than the TVT-O.

    • Jane Akre says:

      Good point. I’m sure Dr Vigna will answer…..

    • Greg Vigna says:

      I have the ladies who have had the TVT or TVT like devices with Pudendal Neuralgia. Is it the distal branches from the surgical treatment? Are the distal branches damaged from traction and scarring from the foreign body response? Are the distal branches damaged from the difficult dissection from removal of the device because of Erosions or for the inevitable CRPS caused by the soft tissue inflammation from the foreign body? Is it really CRPS from the soft tissue irritation which presents the same as pudendal neuralgia? Remember, my ‘Why Women Can’t Wear Tight Pant’. The Defense will need answers to the above.

      • Terri says:

        Dr. Vigna, Thank you for addressing that women with a TVT also can be inflicted and devastated with PN.. Something I would also like to see addressed is the countless women whom never had Lumbar problems until after having TVM that are now suffering from L5-S1 (Lumbosacral Joint) with nerve impingement that is much like PN is some ways with the debilitating pain down the leg, many women whom could very well be suffering from PN are being diagnosed with L5-S1 ?

        Being part of numerous support groups I have seen many women that never had Lumbar or spine issues prior to implant being told it’s sciatic .

        I honestly feel so much is yet to be understood of just how much damage mesh is causing to our bodies.

        Here is a reasonable article about L5-S1 and the pelvis.

        http://www.ncbi.nlm.nih.gov/pubmed/15767882

        • Jane Akre says:

          Thank you for this valuable information Terri

        • Linda Karen Miller says:

          Yes Dr Vigna I also had a TVT made by Ethicon and Johnson &Johnson and I really suffer every day God Bless You

        • Greg Vigna says:

          That is a tough question. My first two live patients in 2006 received fusions in the lower lumbar spine by neurosurgeons trying to help pudendal pain. If a patient has PN with a positive EMG for a radiculopathy (pinch nerve from back) or improvement with a selective nerve block then proceeding with back surgery might be helpful. Tough question and would be on a case by case basis.

  13. Bejah B says:

    Dear People, Can someone please tell me the difference between TRIAL SETTLEMENT and CONFIDENTIAL SETTLEMENT? Thanks.

    Bejah

    • Barb says:

      BEJAH, I believe the difference is just what you said a TRIAL SETTLEMENT is heard in court with jurors present. A CONFIDENTIAL SETTLEMENT appears to be done behind closed doors!!

    • Barb says:

      BEJAH I had to confirm what these mean my discoveries were this:

      A confidential settlement usually requested by the defendent may wish to to able to publicly deny any wrong doing to avoid a precendent which might inspire others to make similar claims.

      A trial settlement is usually done for example car accident the person filing the lawsuit gives up all rights to persue any further legal action and an agreed sum of money is reached.

      • Bejah B says:

        Thanks Barb. I am sure the fact that the Confidential Settlement takes place “Behind closed doors” is very appealing to the defendants in our cases, at least in theory. I suppose the settlements in the matter we are concerned about would fall into the Confidential category, but also seems to fall into the Trial category. Very confusing for me…maybe I will try considering it again in the morning!

        Bejah

  14. anna says:

    After two J&J retropubic implants and being told the first will be removed, the a second one would be placed. instead they never removed the first one, but placed a second one most likely because they had no idea how to remove the first one. I esperience excruciating pain, infections, hip injection, back injections and now pudendal nerve injections with posibility of radiofrequency oblation. The doctor has diagnose me with PN. Why does it sound that this could most likely come for tvt obturator system, and not a retropubic implant.

    • Jane Akre says:

      I’m sorry you’ve been treated this way. Sounds like inexperience…. a PN diagnosis should be aded to your records…. it might qualify you for a larger award.

    • Bejah B says:

      Anna, That is shocking in an environment where so much that is shocking is happening to women, and in a time when they have a place to share their experiences with the world. Hopefully that will make “medical professionals” in general take more care with what they say and do. Clearly “First do no harm” means little or nothing to most of them. I was implanted with Ethicon Prolift in 2010. In 2013 I was diagnosed with peripheral neuropathy in both legs by a neurologist. I have been taking Cymbalta ever since. It helps a lot with that symptom. Anyway, perhaps PN is occurring with many different kinds of implants. They are all made of the same material, are they not so it would seem to make sense. It sounds like the same physician and medical center did both of these procedures, unbelievable! We need to be really careful about who we go to for help. You do not want to let some doctor experiment on you hoping that he or she can gain fame and fortune by claiming expertise and experience where there is none. Please report him, get your files and go see someone else, maybe Dr. Veronikis…and others recommended by people who post here who can be trusted and whose reputation preceeds them. So sorry this has happened to you.

      Bejah

      • Bejah B says:

        Faux paux alert! I am so sorry that I did not also mention Dr. Vigna in my post above. Please accept apologies for this rather embarrassing oversight.

        Bejah

    • Greg Vigna says:

      PN does occur with retropubic. Without a doubt. From a primary pain generator standpoint saying which occurred first or differentiating between PN/CRPS is difficult since both cause allodynia. I will have to leave that to the treating doctors and develop the Life Care Plan accordingly. However, the Life Care Plans for both PN and CRPS will be very similar. If the defense wants to argue that the case is CRPS and not PN or PN and not CRPS, they lose either way.

  15. anonymous says:

    Doctor is there any physical therapy they can help a severely injured person who has severe pudendal neuralgia and what about the long term effects of narcotics on a persons system I just have to believe that I don’t have long to live

    • Bejah B says:

      When the doctor has a minute to reply I am going to guess he might suggest…

      * Warm therapy pool

      * Pelvic floor PT which I can not do because of malformed internal organs

      * Maybe some form of Yoga (Like Circque de Solie yoga)

      * Diet modification

      * Massage

      * Accupuncture

      * A puppy 🙂

      I think that analgesics and most if not all others probably have a negative effect on our liver and kidneys over time…probably nothing acute, rather chronic.

      It will be interesting to see what the good doctor says. He is so generous with his time. I can’t imagine his schedule.

      Bejah

      • jade says:

        Bejah – I know you are trying to be helpful, but everyone of these suggested therapies you listed put me in MORE excruciating pain. See below the results I got from each one:

        * Warm therapy pool (brought more blood to area and increased bleeding)

        * Pelvic floor PT which I can not do because of malformed internal organs (Unbelievable PAIN during and after transvaginal/transrectal PT – could barely walk or drive with birthing-like contractions)

        * Maybe some form of Yoga (Like Circque de Solie yoga) (Stretching the area was impossible and increased the pain – one PT therapist said she felt a “steel bars” in my pelvis which turned out to be the arms of the mesh)

        * Diet modification (Tried everything withOUT any help)

        * Massage (Had massage once weekly from a medical PT who helped cancer patients. The manipulation made spasms worse.)

        * Accupuncture (Drove over an hour weekly to a well-known therapist who was understanding and gentle. Tried cupping with iinscents burning; talking; even had gold needles inserted in my earlobes. Nothing, NOTHING worked and I so wanted it to work.)

        * A puppy 🙂 (I LOVE dogs and have two – but, quiet frankly even they became a burden with the pain – I couldn’t walk them or take care of them. I cried everyday because I feared I would have to give them away after 5 years with me. Before my partial removal, I was calling loving people I knew to see IF they would take them. I was so SAD!)

        I really wanted something to work, but I truly don’t believe anything can work other than surgical intervention.

      • Terri says:

        Bejah, I was diagnosed with Autoimmune hepatitis and I know of several other mesh injured women that were also diagnosed with it.. I was hospitalized because my AST and ALT both went over 1000 ..I’m not a drinker, I don’t take pain medications except on rare occasions (usually when I’m a the feeling death would be easier) I have no doubt mesh impacts our immune system and organs.

        • Greg Vigna says:

          Interesting. Hydrocarbons (ie. Benzene) has been loosely associated with primary biliary cirrhosis (see the New Jersey cluster). If you are positive for Anti-mitochondrial antibodies, your attorney should be notified.

          • Greg Vign says:

            If you are positive anti-mitochondrial antibody I would like to know. This blood test is 25 bucks and highly specific for primary biliary cirrhosis. This condition is so rare that it would be easy to compare incidence between mesh and nonmesh patient.

          • Barb says:

            Dear Greg if its in your medical records that you have had faucet injections and nerve blocks since having these defective devices inserted in your opinion wouldn’t that be a wide eyed question as to why?? Would it be safe to say unless there is a neurologist on one of these panels they will have no idea what these injections and nerve blocks are, the reason behind having these procedures done? And as a professional as yourself is it safe to say as I posted above that all woman NEED to have all mesh removed at some point or continue to be diagnosed with other health issues? When it comes to POP which is not recorded in my medical records until after these devices were inserted although considered mild won’t at some time we also will need surgery along with surgery for all of us who still remain SUI?? I have been hospitalized for days at a time for my septis, that in itself is a death sentence I’m still on a heavy antibiotic for this issue, and again another bladder, UTI. Would it also be safe to say that having our bodies enduring infection several times this has got to be due from the bio films. If we all got full mesh removed what would be the chances of our lives being affected by infections and doesn’t these infections have a great affect on our major organs? How many doctor’s on the panel are going to affiliate woman who have been diagnosed with IC which your saying 9/10 is PN? Doctor’s reviewing are not going to have the education on exactly what IC is!! This is a life time issue for all that have been diagnosed! I’ve been pretty stern with the paralegal is getting my questions answered and have been told NO MILLION DOLLAR PAYOUTS in a laughing tone!! AMS is so quick to pay out, they don’t want more injuries added to cases, my issue is punitive damages. I think we all felt that we should be entitled to what woman are awarded if we were going to court some have less injuries and some have more. I feel like when my packet comes much disappointment will be had!! If I were to start over it would take 8 years at least I wish we knew about this PN issue sooner we needed more education and Jane has done a great job, I just feel I threw my life away!!

          • anonymous says:

            Barb, I understand your frustration and anger toward AMS. I have struggled for 4 going on 5 years and have lived every day in pain since the mesh was put in and taken out. I have had every test they could do before telling me I had PN injury. Even after that surgery I am still in pain. I have developed many issues since the mesh and no one really knows how to help except give me pain meds. I have been told I have had medical issues that I dont even have. I always get a second opinion! I have been through enough physical pain and I dont want any more mistakes ever! Every one of the medical professional suggest things, I try them and they do not help. I am tired of going to doctors and having test done but I have one more important test to do. I want to know what is going on with my body. A body that was in very good shape before this nightmare started. I have been told not to post, or blog or talk to anyone about anything thereby making me a prisoner via mesh. I am so so very sick of hearing that AMS is making settlements and taking care of their victims. Does 60,80,or even 100 thousand dollars sound like a fair compensation for what we have to go through? I hear AMS victims should be happy AMS is settling but for meger amounts! Can they restore a family a marriage a life? What about all the income we lose? What if we cant work the rest of our lives? We are forced into taking the settlement now or waiting years and years ( I have been told) and no promise of a great out come. Some of us can’t do that. Why can’t we be treated fairly? Figure out lost wages, all the medical and pain and suffering. Lost of the right to pursuit a life of dreams and happiness. And all of the life time issues many of us will have! How can we ever find happiness and peace again?

            Here is an interesting quote: We hold these truths to be sacred & undeniable; that all men are created equal & independent, that from that equal creation they derive rights inherent & inalienable, among which are the preservation of life, & liberty, & the pursuit of happiness; AS CORNY AS YOU MAY THINK THIS IS IT IS IMPORTANT!!! Because our constitution gives us the to preservation of life and the right to pursue of happiness. How can you be happy and miserable all day. How can we preserve a life, a body that is dying on us. The stress from the constant pain is taking its tole on me and many many others. Who had the right to take this from me, NO ONE!!! Yet the doctor who did this to me took that. AMS took that! And some and I say some not all attorneys are taking that by thinking that 100,200,or 300 thousand would even be enough. I am young enough that I could have worked 25 more years, but now I never will work again. Every few months we are thrown a tidbit and told to hang on. WELL I AM TIRED OF HANGING ON TO PROMISES NEVER KEPT, OF DREAMS THAT WILL NEVER COME TRUE OF WISHING FOR A BODY THAT DOES NOT HURT ALL THE TIME!!!!

            And other than for the victims and some family members and our dear angel Jane and a few very few others no one really cares. I can hear the board members now, shut them up! Throw some money at them and shut them up.

            I agree there needs to be a neurologist on the review board. Recently I had to talk to a medical professional about some nerve damage that I have. She said and I quote “I have never heard of the nerves you are talking about and asked me where they were??!!!! OMG!!!! And these are the people who are taking care of us. I know we need to go to the doctors who know what they are doing. I can’t. I simply do not have the money to keep paying out of pocket even the co pays.

            So to the many of you out there who try to help I say thank you. To those who say we will never get a million dollars I say WHY NOT? I guarantee you if you were wearing my shoes and have had to go through what I have you would want several million. But I am not greedy I want returned to me or compensate me for what I have lost. I am on my own now and nothing can ever change that. But you sure in the hell can make it right the best you can. I know J&J and the rest are all holding out. God is watching and if you ever fear anything in your life you had better fear Gods judgement on you. It is said that God counts a woman’s tears. If that is so AMS you are in serious trouble just because of the tears I have shed because of mesh. I do pray God’s judgement on you. And I would not laugh at that. Someone, some doctor, some attorney, some Master of the settlement process needs to do the right thing and pay people the right amount.

            I REALLY PROPOSE A DAY OF PRAY FOR ALL OF US MESH VICTIMS AND THEIR FAMILIES. LET’S GET TOGETHER ALL OF US WHO BELIEVE THAT PRAYER DOES MAKE A DIFFERENCE AND TAKE THAT DAY AND PRAY AS MUCH AS WE CAN TOGETHER. YES IN OUR HOMES OR WHERE EVER YOU ARE. PERHAPS THIS COMING SUNDAY LETS MAKE IT A NATIONAL DAY OF PRAYER FOR ALL THE MESH VICTIMS. OUR FAMILIES ARE VICTIMS TOO. IT IS A THOUGHT THAT I WOULD PUT OUT THERE. TELL YOUR FRIENDS AND ANYONE THAT WOULD BE WILLING TO PRAY THAT DAY FOR ALL THE MESH VICTIMS THAT THEY GET THE SETTLEMENT THAT WILL HELP THEM AND NOT DRIVE THEM INTO THE POOR HOUSE. LET’S PRAY FOR HEALING AND WHAT EVER YOU ARE GOING THROUGH. IF YOU ARE ACTIVE IN CHURCH PERHAPS ASK THE PRAYER CHAIN TO PRAY MIGHTILY. LETS LIFT OUR VOICES TO GOD IN UNISON ALL IN ONE DAY. He is our only hope I believe. He is all that I have right now to hang on to. I have to believe and trust in God or I would take my own life. At least I do have life insurance for my family if all else fails. Because I will not be a burden to my family the rest of my life. I am not sure I can even live in the pain I do daily the rest of my life. But I do trust God to help me through this and in the end we will win the victory.

            DIDNT MEAN TO GET PREACHY BUT WHEN GOD IS ALL YOU HAVE, PRAY IS ALL THAT I CAN DO.

    • Greg Vigna says:

      For those most disabled there needs to be an all of the above approach unfortunately understanding that there is a concept of ‘functional restoration’. With RSD of the Arm you do sympathetic blocks followed by very vigorous therapy some times daily with injections every few days. It reprograms the sympathetic tone/central processes and it does work.

      With PN/CRPS, the same concept applies which will include the following for those at the very end of the road;

      1) Ketamine five day protocol followed by infusions every 4-6 weeks as an outpatient

      2) Botox

      3) Pudendal blocks

      4) Physical therapy/pelvic therapy/exercise in a pool to actively achieve range of motion, flexibility.

      It is a daily fight that needs psychological support, help at home, etc.

      I’m telling everyone that the manufacturers have never seen a properly devised life care plan for a catastrophic pudendal mesh client. They will puke.

      I’m glad there are a few brilliant attorneys who have seen the light. That light is a Vigna Life Care Plan. I’m sorry to be confident (cocky) about this when I say, I know this stuff because I know the experts in the field. I start my day seeing spinal cord patients everyday. Seen 10 already today and they have it better than the catastrophic pudendals at the end of the road.

      • kitty says:

        Thank you so very

        Much Dr Vigna

      • jade says:

        Dr. Vigna – Can BOTOX for pelvic spasms and pudendal neuralgia be injected withOUT being brought into the operating room and having to be sedated? Having had multiple TVM blocks in doctors’ offices, I thought that the BOTOX TVM injection could also be given without sedation. And, will the BOTOX make me unable to feel my abdomen or make me incontinent either bladder/rectal function? Can you also recommend a doctor on the East Coast who is experienced in giving injections.

        • Greg Vign says:

          I will look into that. I had a pediatric spasticity interest in the 90’s and never sedated. Women are getting dry needled all the time. What big city do you live near?

        • Greg Vigna says:

          Hi Jade, couldn’t find someone. I will do my best to find doctors across the country who are providing care without that unnecessary cost. Just swamped.

          GV

          • Jane Akre says:

            I have a growing list of docs.. what are you looking for?

          • jade says:

            Dr. Vigna/Jane/Barb – They want to sedate me, bring me into the OR, find the trigger while I’m awake, put me under IV, and inject. I don’t want to go under any kind of sedation. That’s why I’m looking for a skilled surgeon who can “hit the spot” without sedation. They made no mention of Xray or ultrasound to guide them, either. So, I’m extremely “gun-shy” about anything right now. I know all of us victims has permanent anxiety about anyone touching us in any way! So very sad if we are going to progress in treatments that will help us! We will never be compensated for the permanent mental anguish, anxiety and pain we suffer every day.

        • Barb says:

          Jade they sedated you?? Mine has always been done with an xray so they can see where they need to guide the needle without sedation! When I had the 2 nerve blocks they gave me a valium put an IV in my hand gave me very little sedative plus the doctor also injected several numbing medications all around the area! Immediate relief it worked wonders!

  16. Kenda says:

    I too have so many problems. My legs feel like something is eating them from the inside. Always feel I’m getting stung or bit. Bowel movement is a painful treat maybe one per week. Every morning if the bathroom is occupied I am a complete mess for my bladder is always on release. No body will listen to me. Urogyn cancelled my visit. Now what. I feel so dirty im losing my marriage after 15 yrs I’m 3000 miles away from my children to get help from husbands family who is tired of us freeloading. That’s how I look at it. I can’t get a kidney transplant with this situation. I know if I don’t find a way to get to my kids and get some serious help I’m no good to anyone. I worked so hard to have so much and to lose everything I mean everything. I don’t own my own soap or shampoo. What a loser mesh has made me. Now stage 5 kidney failure and need fistula but I’m scared to death what if that goes wrong. I have beat cancer losing my parents, fighting PKD (which was under controlled until this great hammock that I wont even know is there per doc to get defeated by money grubbing murders. Sorry I’m so angry. I have no one here no way to go get help and no money to survive. 3 yrs still fighting for disability just now got appt to judge but not till oct. Gee. I just want to be half normal. I also read that people with a severe condition should not been a candidate for a mesh anyway even if it wasn’t bad. No one will help me or admit. How would they feel if they lose their jobs making great money, was evicted , both vehicles repo and moved children with father until I get better and top it off my new grand baby I have never met or can’t hold. Tell me u wouldn’t rather be out of this world.

    I am done but want to thank you both for standing in with us and fighting for our life. Jane and doc u are both angels in my book. Hang tough my fellow mesh fighters.

    • Greg Vigna says:

      I’m so sorry. I have never had a woman with pudendal neuralgia not get disability. Unfortunately the medical community has failed you. The FDA has failed you. The Government has failed you. I believe there is still time for the legal community to get it right.

  17. Bejah B says:

    I hope the FDA releases the warning concerning mesh implants before the end of the year. Regardless of their motivations for delay, they can not put it off forever (That would be JnJ mindset!). I hope that the notice notifying the public that these mesh “devices” have been changed to Category III devices is broadened to include the forgotten populations of people who have not experienced symptoms or reported them to date, and those individuals who had an abdominal or robotic implant as well and who are symptomatic. The 2011 notice stated that the later population, not included in the present MDL’s was “less likely” to have serious complications. What does “less likely” mean? That sounds rather vague. Would the defendants want to eliminate any part of the population of the injured? Of course they would. Food for thought? Maybe.

    “Mesh placed abdominally for POP repair appears to result in lower rates of mesh complications compared to transvaginal POP surgery with mesh”. FDA

    Bejah

  18. angela says:

    I had the bladder sling removed,And am in constant pain,my body still weak months after.trouble urinating,Have to push to empty.Doctor who took it out when I went back and said the mesh was a recall .went in his office ,came back 2 minutes later ad said no that was not a recall implanted in you.It has been confirmed it was,He said after I told him I needed my bladder fixed so I would not pee on myself,And asked could he use my own tissue,That I didn’t want anymore sling implants,He replied you seem like you have a over active bladder.gave me some samples to try.i told him I had a bladder infection.anotherone of many,And I am well aware of what one is like.he never took a sample to check and see.i sat there in pain.And he said I don’t want to do anymore surgeries on you I am afraid you will come after me.just because I said my sling was a recall.now I am hanging in pain.damage done,cant walk at all.in a chair.wheeled everywhere I go ,my tailbone stays sore like it is severely buuised,And my stomach stopped working,I have a perminet stimulator implanted in my stomach.My bowels don’t work.constipation sevesr .go 8 to 12 days not going to the bathroom,I am in bed everyday get up to bath go to bathroom an take a bath.Cant think straight,Try not to leave the house,.I have a theraypiest I see,She said the surhery and devastation,and the loss of my ability to do things I can no longer do.Has caused to to loose my identity.I lay in ned cry several times a day.I pray to God every day.And I have lost so much still loosing everyday.it is out but the damage is done.i am on Prozac for depression,It hurts to sit up long,When I have a doctors apt,as soon as I come to threw the door, I go straight to the bed.My family tells me I wish you were like you use to be.Oh and the bladder infection I said I had well 2 weeks after seeing the doctor who I told I had one wouldn’t check to see.I went to my family doctor an and he checked my urin an I had a bladder infection,with traces of blood.and was sending it off to the lab for futher testing.i have to lay down now.writeing this has made me very tired……IF THE DOCTOR REMOVED THE MESH SLING.AND HE DID,WHY AM I STILL SO SICK?AND I DONT KNOW WHAT OTHER ORGANS ARE DESTROYED/WHY SO WEAK?WAISTE DOWN SEEMS TO BE DETERATING.I AM SO SCARED..WHAT DO I DO NEXT?I DONT KNOW SO CONFUSED.GOD BLESS YOU ALL THANK YOU JANE FOR ALL YOU DO .

    • Barb says:

      Angela stay on your doctor!! I had blood in my urine and at times still do to. They need to rue out cancer of the bladder at least that’s was why I was sent to a specialist no cancer however they discovered intertestial cystitis. There is no cure however there are meds specificaly for this condition, this disease is very painful, ask them to do a cystocopy, I have been on an antibiotic and medication for this issue since 2012, This is a life time injury, you will have to follow a diet, it is caused from inflammation to the bladder! I’m suspecting at this point its been caused by the bio films within our bodies!!

      • Bejah B says:

        Barb, I was diagnosed with IC as well. Vulvodynia came along with it. I so wish I had a bidet in my bathroom. I keep a basin of cool fragrant water and apply a little after I empty my bladder which is increasingly difficult to do. I am also going to empty bladder more and more frequently but produce very little much of the time. I think going to the bathroom so much, the urine causes rawness and burning….along with whatever is causing the pain which extends up inside. It is maddening…it feels like “everywhere (almost) there is pain” (Tim Buckley). The cool water sort of like a Sitz bath helps. So does the application of HRT cream but it is so expensive….$80 co-pay. I am supposed to apply it three times a week. It helps but does not seem to stop the pain for very long. Years ago, long before all of this I remember thinking that if one needed pain medication it was available. It never occurred to me that there would be both a cruel stigma AND a question of affordability in addition to the specter of being accussed of being “Drug seeking”. I have not experienced the later but I have been in situations, even post surgery, where insufficient pain medication was provided. And they dare find fault with us, the patients, the victims…makes my blood boil.

        Bejah

      • Lea says:

        I recently changed doctors (am now driving 4 hours to see a urologist) he tells me i have pelvic floor dusfunction but he doesn’t feel it is coming from the mesh –although i NEVER had this abdominal pain until after the hysterectomy/monarc sling — his suggestions are in line with the ones i am reading here i.e. Sys baths, advil, and a perscription called nitrofurantoin mono/mac 100 mg–he tells me he can remove the mesh but he will not get all of it out since it has been 4 years –would appreciate all of your thoughts from your experiences –i am thinking that what i might have is IC and he just hadnt yet put a name to it –i go back in 4 weeks and see if the medicine has helped or if i still want the mesh removed –i told him on my last visit the sorriest day of my life was when i agreed to the hysterectomy/sling!!!

        • Jane Akre says:

          Lea- he needs to educate himself on the pain associated with pelvic mesh implants. There are not 80,000 hysterical women out there…. does he know there are in excess of that many in one court! Not to mention internationally. Really, he needs to read. Please do not seek a partial removal.. I’ve not heard of anyone who is in better shape afterwards.

          • Lea says:

            This doctor claims to have removed mesh –in fact he said he had done one the day before my appt but he also days he uses mesh where he feels it is applicable (whatever that means) but he feels after 4 years some of it will be imbedded and not able to be removed AND he doesnt feel nt problems were caused by the mesh which leaves me in a real quandary

          • Jane Akre says:

            Would you care to share his name, even privately….. janeakre@meshnewsdesk.com

          • Jane Akre says:

            Let us know where you live and whether you have insurance. There may be a better option. would like his name though.

        • Greg Vign says:

          I’m sorry any mesh client/woman I’ve talk to with post-mesh symptoms on IC gabe PN. I will stand up in front of any doctor to explain. please look at my writing and medical literature I can provide. IC post mesh 9 times out of 10 is PN. sorry

          • Barb says:

            So let me get this right Greg you believe that those of us who have been diagnosed with IC is more likely PN? I’m going to update on my surgery as of july 17, 2015 I’m still very tender around the bladder however the doctor said because the mesh had eroded in my bladder and uterous she had to push and pull to make sure she could cut away exposed mesh. I felt better 2 weeks after then I do now. Having sharp pain in my vagina frequently, and my bladder just feels like it’s irritated. The doctor said it was a mess and she had to suture the 2 holes from trying to pull out as much mesh as possible, however it has relived some of the pain my next option would be a hysterectomy.

        • Barb says:

          Lea insist the doctor does a cystoscopy

          that will let him see if you have it. The procedure is painless!

          • Lea says:

            I did have a cystocopy and it was fine –no invasion by the mesh –i recently asked tge doctor if their was a way to determine if i gad pudendal nerve danage –ge said there is a test but that it is not very reliable -he put me on nitrofurantoin but after taking it appx 1 week both feet started to swell so i had to stop taking it –$172 down the drain –my symptoms remain the same low grade burning in urinary tract area all the time (even when i do nit gave a UTI) i haven’t had a UTI since 7-21; when i sit my butt always aches and pain in my lower abdimen that cones and goes (mostly it’s there) i go back 9-16 but since i had to stop the medicine i am not sure why i am going –can’t decide whether to have the mesh removed since he doesn’t feel he can get it all after 4 years –the big unknown will i feel better if it is removed or could i be putting myself at further risk …as for AMS (mine is a monarc sling) they can keep their insufficient settlement and let my filing proceed through the courts–especially since i have no idea what wil happen next

    • Bejah B says:

      Dear Angela,

      Praying for you. Glad you have at least one physician who seems to care and is trying to help. Maybe she can refer you to someone else is kind and knowledgable. Some things to think about, obvious to those not in a difficult “place” physically and emotionally but hard for those who are so here are some bullets to consider:

      *Do not push when you go to the bathroom, be gentle with your internal organs for now

      *Take Miralax or Ducolax (?) and

      *Drink prune juice to assist with bowel movement

      *Do you think you need antibiotic?

      *Did your family doctor order blood work or imaging to pinpoint the source of your pain?

      *Try to be examined by a Gastrotenterologist to make sure there is no damage to your intestine

      *If you have significant blood in your stool or urine call dr. right away, if evening leave msg with ans. service for the on call doctor.

      *You can always go to the Emergency Dept. at your local hospital if you even think you need urgent care

      *You should get the file from the implanting hospital and surgeon

      *You should get the file from the explant doctor and medical facility (Especially given his conduct!)

      *When you get your file (or your family dr. can request it get the data from the implant yourself and look it up yourself or ask your family doctor to do so as it seems you trust her.

      *When you feel better report the explant doctor to the State Medical Board. They should have an online form for you. *Reporting to the American Medical Assoc. is a waste of time. They support physicians, not the people.

      *Remember that people respond differently to those close to them who are in pain, especially when they feel helpless. Sometimes they seem to seem indifferent or tend to blame the victim. You need to be even stronger and understand this and forgive them and that will probably make them feel a little less afraid and more able to be near you and provide the companionship you probably need.

      *Ty to visualize a day when things are better, when you have found a doctor who really helps you.

      *Remember that pain is one of the ways our bodies try to communicate with us. If you feel you are having unbearable pain constantly see a pain management doctor if you are not already. Allow him or her to see your tears. Make sure there was not a problem with the explant that has not been addressed.

      *How capable was the explant doctor you saw?

      *Was that person, if I may ask, a Urogynecologist familiar with explant of mesh? Was he/she a Urologist, an OB/GYN? *Suggest you see a Urogynecologist. What part of the country are you in? Maybe someone can recommend one for you? If your insurance will not cover, you can ask for a complementary consult. Even beg if you need to.

      *We need to leave pride along the road somewhere and do what needs to be done.

      *Being frightened comes with the territory. Remember “This too shall pass”.

      *Sounds like you need anti anxiety medication if you do not have a script for it already I would ask dr. for one (for 12 months).

      Take care of yourself. Remember always that the FATHER loves you. HE did not do this too you. HE feels your pain. This life is very brief although it seems very long sometimes, and at other times seems to go by so fast. Soon we will all be called home, relatively soon.

      Be brave. Know that there are so many there with you in spirit.

      Bejah

    • Greg Vigna says:

      Hi Angela, there is a lot there. If you were healthy and active and then the mesh, then likely a mesh related complication. With 100% mesh removal then this is likely a mesh related complication. If you have intractable pain worse sitting than standing go to TVM123.com. Click the ebook in the top right corner. If that explains your pain somewhat then keep reading and go from there. Dr. Hibner in the ebook describes many symptoms that are unique to this injury (pudendal neuralgia).

    • Alicia w says:

      I went through the same with many doctors, had a partial removal and was told it was completely removed, suffered another 15 months before finding care, had severe erosion on both sides of my urethra and severe scarring and diagnosed with obturator neuropathyand pudundal neuralgia. I fought back and reported that surgeon to state medical board, they cleared her and said she did nothing wrong, I requested reconsideration and they listened! The state board is disciplining her for incompetence, false documentation, inappropriate treatment of pain(no treatment)and conflict of interest with AMS. She is an AUGS physician who lied and abandoned me for benefit of AMS and she is being exposed and disciplined

  19. Kitty says:

    Jade I recognized your Artwork (gruesome) freakish and painful as some of us feel. and thanks for the CR Bard info Was that the Covidien part—– 180Million? Please let me know ASAP Kitty

    • jade says:

      I do not know re: Coviden. I don’t know IF that was the Coviden part or not. It was just printed today. I’m also curious about the Boston Scientific settlements in the above posts. I’ve heard nothing about that. Jane – can you share any further info on BSC settlement talks – didn’t know that there were any going on at this point.

  20. still sick says:

    had removal surgery from J&J Pro over four months ago. omg I am still so sick. So many problems and so much sickness/pain. So many dangerous drugs I have taken, so many shots, so many different doctors. So tired, so in misery. Bed every day and night only getting up for doctor appts or to eat, bathe or to take mini breaks. Bad bad bad medical devices. It is a death sentence.

  21. K says:

    Does anyone have Dr Hibner’s email address?

    • anonymous says:

      He does not have a personal email address just be office one

    • Greg Vigna says:

      He can’t give that out. He is swamped and it would be a medical-legal nightmare for him. He would be bombarded with questions and wouldn’t be able to provide the timely responses and be viewed as unresponsive.

  22. K says:

    We need a list of Drs that can help us in our areas. It is so frustrating we have to travel out of network for treatment for all of our injuries and diagnosis. Why in the hell is this continuing? Why isn’t anyone listening?

  23. kitty says:

    So a woman sits in a booth at a restaurant or sits in a recliner without much pain-‘- but when she gets up the pain and spasms at ishial area is shocking and crippling. B &B issues

    • Bejah B says:

      Kitty,

      Suggest to her that she may want to shift focus and search for a good pelvic floor PT person rather than a physician. Doctors do not seem to know anything about this. PFPT’s know all about “But pain” and a lot of other things. Connecting with a very good one is critical. She will find some peace following this path, I feel certain, given all I read yesterday. I will write more later today on this.

      I wonder if hot springs would help us. I live near a hot springs so I will try it. Suggest others do as well and we can then compare notes. Many minerals in the waters…they may help us. We must explore alternative therapies ourselves, ones that are safe. It seems most doctors are not going to help us much if at all. The FDA is not only not going to help us, it seems now profoundly corrupt, can not be trusted and may indeed be an enemy camp in many respects. I long for the days of innocence when I was able to trust people, when I thought the oceans would cleanse the earth, when I thought the great forests of the Sierra, the watershed, the jungles of the Amazon (the lungs of the planet) would always be there. Now although I believe the earth will recover after we are gone, it will take a long time but it is a comfort. Have you ever thought how beautiful the earth would be if we had never existed? I pray we do not find a way to venture into the Universe because we would damge other planets just as we have deamaged our own. Did you know that “they” are engaging in salvage operations on the Titanic? I was appaled when I learned this. This is sacred space yet they rape it anyway. They do not care. They care about only money, profit, greed. The Titanic seems like our bodies in many ways to me. When I learned what was being done to it I wept. Surely we will perish from the earth by our own hand. Take heart though for the FATHER says “The meek shall inherit the earth”. He did not mean the shy among us. He meant the gentle loving sould among us, the innocent, the children, those who care for the earth and eachother, those who know that love is really all there is.

      Bejah

      I am going to invent a special whoppie cushion that protects the coxyxx/lumbar region so I can ride my horse in less pain. Stay tuned. 🙂

      Bejah

      PS I bought a magnificant skeleton of a human that is about 4 feet tall and probably made in the 1940’s…probably used in a classroom. It is beautifully made. All the connections are brass. I named her Babette. She helps me understand my bones, where they are and how they may play a part in our concerns about soft tissue injuries. I am trying to find her a doll hat to wear but she likes being “naked”. She finds it refreshing. It is interesting how the spine leans in toward the pelvic cavity and how much narrower the pelvis is than the shoulders, where the rib cage ends, etc. Maybe we should all go to medical school. I will tell you this, I would NEVER sell my soul as many of these doctors have. It is tragic for us all.

      Godspeed mon amie,

      Bejah

  24. Debbie Edwards says:

    I am calling on all my “Sister’s in Pain” and their families to join me in writting Donald Trump and ask him for his help in getting our words into the spotlight…… I am NOT being political about this request, but he has stated many times he “loves” women and that he isn’t in anyones pocket, so with the possibility of 100,000 plus votes he might help. Like I said, I am not political, but any help from anyone would be welcome….so please join me in this:

    Attn: Donald Trump

    C/O the Trump Organization

    725 Fifty Ave. New York, NY 10022

    campaign office. 646-736-1779

  25. Bejah B says:

    Dear People,

    I was just reading at Dr. Vigna’s reading room (Very comfy seating) and came across the following…I included whole para. to be sure context was OK. I feel like my urge to urinate is getting more and more frequent so when I saw that Dr. said that this can be caused by the Urethra a light went on in my head somewhere. Perhaps ya’all know this but just in case it is of interest I plunked it down here. I wonder what relationship a kink or something in the Urethra might have with IC, etc. It is really important for us to venture out and research for ourselves. We can learn a lot doing that. Anyway see last para for comment re Urethra.

    BTW hush, hush, if you have a little problem with constipation, and many of us seem to including me, there is something you can do just until you can get to some bran muffins and prune juice. Only do this when your body sends you a signal that it is interested in having a BM. Take your right hand and place it on your bum. Put it close to the center and sit on the toilet and push the skin outside of your body gently and it can help get the body to release the material into the toilet. (Why do we call it “stool”?) What a dumb name. This is not something you want to do habitually, just as you do not want to use laxative habitually. Most of us probably know this quite well but some may not. As always, be sure to ask your doctor before doing anything suggested by your support group, etc.

    UTERINE PROLAPSE:

    The uterus descends down into the vagina. The vaginal walls are pushed downward and may protrude out of the vaginal opening. It is more noticeable after

    -straining to go to the bathroom, ( I am afraid to strain so I do not BUT I sit and wait and focus)

    -at the end of the day, or

    -if standing for long periods of time.

    •ANTERIOR PROLAPSE: The front part of the vagina bulges inward due to pressure from the pelvic organs. This is usually caused by the bladder and urethra shifting position. It is medically known as a cystocele or urethrocele.

    When the bladder shifts position, the top of the urethra, the tube that funnels urine from the bladder out of the body, can bend. This makes it difficult to empty the bladder and can lead to chronic bladder infections and a constant urge to urinate

    Bejah.

  26. msm says:

    Many surgeons are claiming and documenting “complete” sling removal when mesh remains in the body. You would find this in the operative notes. Language used may be something like “arms were freed and removed in their entirety” or “mesh was completely removed intact”, etc. What they are actually doing is removing as much as they can reach through a small vaginal incision. The pathology report should include the length of what was removed.

    Ask the surgeon directly if the is any polypropylene remaining in your body and how the upper portions were removed. There are articles and interviews that Jane has personally conducted and that describe how a mid-urethral mesh sling is completely removed. It requires more than a small vaginal incision. Perhaps one of the new “mini slings” can be removed that way?

    There have also been warnings about partial removals or “trimming” or “revisions “. These can result in more pieces of mesh that may migrate or erode. For illustration purposes, cut a piece of knitted material and note the unraveling.

    Manufacturers instructed surgeons to perform partial removals, trimming, or just cutting it in two over the urethra. Did they test those procedures and the effects of the remaining mesh? Absolutely not.

    • Jane Akre says:

      right….. going after the mesh from both the entry and exit points I’ve seen to ensure a complete removal (minus any particles)……I’m wondering if anyone is offered a transvaginal ultrasound AFTER the removal to make sure there is nothing behind. Anyone?

  27. meshie says:

    One of my problems that drives me crazy is how my vulva vibrates it just starts won’t stop drives me crazy and then I can’t walk for a couple hours afterwards..and once again the Dr. looked at me like I was crazy.. I also have more problems just like all of you. My internist sent me to dermatology for the lumps I now have, dermatology sent me to gastro, and gastro referred me to internist, so when my internist read the gastro’s notes, he said I’m an internist…go figure…..and this is my life with Doctors. When will the AMA step up and start admitting and trying to get help for us not wasting all this money going in circles…. My implant was in 2003 and I woke up in terrible excruciating pain…. so yes I have lived with this for 12 years and yes my life SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!

    • meshie says:

      forgot to say I have the TVT-O two removals, and I still have the arms in… my doctor didnt remove them..and I am even worse then before

    • stopmeshimplants says:

      Hi Meshie,

      Can you provide some more details about the lumps you mentioned? I have them under the skin on my left leg. There are several. I too was referred to a gastro doctor who said I have a growth in my liver. When I tried to go back to follow up on the growth she was no longer there. I am afraid all of this is mesh related. I hope I am wrong.

    • Greg Vigna says:

      There are no malpractice cases in delay in diagnosis of pudendal neuralgia because the Standard of Care in the medical community is not to diagnose the condition. The AMA is worthless. Not sure why it exists.

  28. Donna says:

    I have been so blessed to have both Dr. Hibner and Dr Vigna. Both are very kind and knowledgeable men. I highly recommend, if at all possible, to contact them. You can look up Dr.Michael Hibner at St. Joseph’s in Phoenix

  29. Bejah B says:

    Dear people,

    I just went to look up Dr. Hibner, especially since he is so close to me (Phoenix) and the listing below the link to St. Josephs which he is associated with is a blog by a young women being treated by him for symptoms we have talked about here. Here is a poignant exerpt from her blog:

    “Before my surgery, I was in 7/10 pain as soon as my feet hit the floor in the morning. My left Alcock’s canal felt like a knife was stabbed through it. With every step I took, I felt a horrible pinching, burning, pulling sensation in the crease of under my buttock and perineum. It would send neuralgia (tingling, burning, shocking) into my vulva, up through my piriformis and all over the place. By 12 noon, I had to lay down completely prone (on my stomach) and it would take at least an hour for the pain to subside”.

    Find the site at FightingPNE. Blogspot.com

    Blessings,

    Bejah

  30. anna says:

    This chapter should be cited as follows:

    Hibner, M, Castellanos, M, et al, Glob. libr. women’s med.,

    (ISSN: 1756-2228) 2011; DOI 10.3843/GLOWM.10468

    Permanent compression of the nerve is caused by adhesions or foreign bodies such as mesh or suture entrapping the nerve.19 Our clinical experience dictates it may be difficult to distinguish between patients who only have muscle spasms from those who have nerve injury. Indeed, patients with nerve injury almost always have accompanying muscle spasms; therefore it is paramount to separate both groups since treatment regimens are different (see diagnosis and treatment section).

    Its icredible when you have to hear your case worker tell you that unless, a doctor specifically state that you symtoms are mesh related it might not be accepted in your case. With two meshes implanted in me you would think they would know, why I’am suffering.

    • anonymous says:

      To be fair to Dr. Hibner he is not the only position that I’ve heard say yes it’s caused by the mash and then these positions don’t want to put it into writing I realize they’re all very busy but post-op care is as important as pre-op care dr. V. Please explain to me why doctors do this it’s frustrating as a patient to be told one thing ask to be put into writing and stab someone hesitate it is the truth I know all my injuries are from match as a perfectly healthy active young woman before this now I’m an old cripple waiting to die

    • anonymous says:

      Basic. Is doctor why wont doctors put what they find in writing

    • Greg Vigna says:

      Credible representation involves active case management by those with a medical background. It holds with traumatic brain injury, spinal cord injuries, burns, amputation, and pudendal patients. That service can’t be afforded by a new lawyer or a paralegal. That service I would grade an ‘F’.

  31. tammy says:

    Once again more truth is coming out from being butchard i dont think this is goimg to make all the liers happy it is time to stand.up for this mess these bas####!!!! Destoyed my life ….

  32. anonymous says:

    Dr. V., can you tell me why a doctor would tell you to your face that the scar tissue and nerve pain and damage was indeed caused from mesh then when you repeatedly ask him for that to be written down on paper it seems like he doesn’t want to do it why would Dr. Hibner do that??? He seems to be impossible to get ahold of after Prudential nerve surgery

    • Greg Vigna says:

      Pudendal neuralgia prior to the mesh occurs in 1/100,000 people. Rare. There isn’t even an reasonable argument by the defense to say that it was present before. Let them do that, and they will lose any credibility they might have. In records I have review, I have seen the documentation necessary. If it isn’t there logical conclusion…. it was omitted.

  33. Disgusted says:

    http://www.ncbi.nlm.nih.gov/pubmed/25247915

    This is a link that shows one person who got relief from pudendal neuralgia with neuromodulation. This is really hard, not much is known, there are varying reports by different experts. This is a relatively new field and once again we’re guinea pigs. I wonder if the PN damage is greater than 1-2% of the population of mesh injured.

    • Jane Akre says:

      I’ve wondered the same thing.

    • Bejah B says:

      I feel certain the percentage is considerably higher…probably way over 10% at least and perhaps closer to 40%. It may be something that victims find it difficult to identify. Sometimes we just know we hurt. Physicians seem to be less skilled at diagnosis as I thought, and I think that often with this issue there is clearly a reluctance to be involved at all. Is it for fear of a lawsuit or is it something else. Today more questions than answer still, even more so.

      To digress, can someone tell me why Holder left the DOJ? And was that the real reason?

      Bejah

    • Greg Vign says:

      Dr. Hibner in a conference in San Francisco said 5-10 percent of those with lawsuits…. No one knows. madness needs to stop.

  34. guest says:

    Debbie Edwards says:

    August 12, 2015 at 10:04 pm

    I am calling on all my “Sister’s in Pain” and their families to join me in writting Donald Trump and ask him for his help in getting our words into the spotlight…… I am NOT being political about this request, but he has stated many times he “loves” women and that he isn’t in anyones pocket, so with the possibility of 100,000 plus votes he might help. Like I said, I am not political, but any help from anyone would be welcome….so please join me in this:

    Attn: Donald Trump

    C/O the Trump Organization

    725 Fifty Ave. New York, NY 10022

    campaign office. 646-736-1779

    __________________________________________

    I wrote him a letter 3 years ago and told him how bad I was being treated at work, how sick my daughter and I had been, and how I lost my house and eventually my job. He never replied, but after being told to move out of my house, I was told to get my ass back in the house by my new anonymous investor.

    • Debbie Edwards says:

      That is so sad he never wrote you back. I was hoping with the possibility of 100,000 plus votes he might help. I have called and maybe if there’s a few hundred calls he might look into it. Maybe I am reaching for the stars, and praying for a miracle, but no one is leasing to us. I am NOT going down with out a fight, but I don’t know how long I have at my age…..but I will not give up.

      God please bless us all

  35. Nanny Bug says:

    I really enjoyed being educated on this . I was diagnosed with severe perineal nerve damage, Levatore Syndrome, drop foot, partial paralisis … . I fell in April simu got of of bed to get a glass of water & didn’t realize my right foot wasn’t moving . Two steps forward on the left side @ two behind on the right side caused instability & I fell & broke my foot, ankle , tibula & fibula. I was in the hospital & rehab for 17 days . I was totally bed to bathroom restricted for 2 & 1/2 months . Home Health had to come to our home for rehab . I didn’t realize when the Professor & surgeon at UAB Urogynocology td me what I had 5 months a go this could happen to me . Now my pain is worse because I don’t only have this nerve damage & severe pain but all these broke bones. I didn’t know I had drop foot either. When the neurologist that I was referred to after my orthopedic surgeon told me there was something terribly wrong. My symptom of burning, feeling scalded, fiery darts being pined in me , falling episodes , vaginal pain that goes down my legs . It’s much worse on the right side . I am so miserable but at I found out what I really have . I have contemplated suicide because it gets unbearable often . I think of my precious daughter that died at the age of 32 from breast cancer & my grandchildren that need me I fight my way out of it. I’m sure my words are mispelled but sure you guys get my point. I have to set in the recliner with my legs sprawled out wide open & then threw over the side arms . I pray, cry , nothing changes my feelings . I’m in debt head over hills with medical bills. I beg for your prayers , I need to find peace if it can be found . I now have not only partial paralisis But a terrible limp as well . It’s strange the paralisis you would think causes less pain but has made it worse . Not to say you feel like someone had put you in boiling water on certain places !! Thank you For listening to me . It’s been going on so long now I feel my sisters non longer care to listen but perhaps not even believe me because the symptoms are so awful !! If this doctor or anyone knows of a way I can get help please let me know . I don’t think I can do this much longer ! Over 5 years now & We have no choice but to wait on compensation . That’s out of our hands but available help could still be possible according to this artical . Even go he able yo afford you medication would be wonderful as apprised to not paying your bills properly . Thanks , Nanny Bug my cell is 256-510-0244 if someone knows how I may be helped . I do have legal representation & have a suit against J&J . You all know the rest of the story where that is involved .

    • Bejah B says:

      We believe you. Many of us have thought about suicide. We are all bearing what we must. If you take your life how do you think it will impact us? We need for you to hold on. We need for you to believe what is hard to believe. It is called faith. You can do it. We need to stick together. You said “sisters”. Chin up sister, be brave, take it a day at a time. Time moves forward. There is movement, behind the scenes things are happening. We are with you in spirit. Go to church if you can. Watch a service on TV if you can not. Ask your church members to pray for you. You can even ask by phone. It will help.

      Bejah

  36. Barb says:

    Dear Greg just having you answere some of our questions that others seem to not know the answere to is very inspiring!! I thank you personally for believing in us!! I hoe you continue to share your knowledge I feel you have helped so many here, and also having the concerns of the mesh injured and so many more! I hope you continue to help us if only by a posting best regards to you

    Sincerely, Barb.

    • Greg Vigna says:

      There is much more to come. Education to empower women medically/legally. The tide is turning for the pudendals… The ignorance in the medical community will continue…but this is now about compensation and destroying the manufacturers financially. Remember, pudendals have already lost so much there is nothing else to lose.

      • Bejah B says:

        There is a lot of valuable information on Dr. Vigna’s website. If ya’all have not visited there yet, you may find it well worth your time. It is hard for me to sit for very long so I tend to use my laptop wirelessly and put it on my tummy laying on the sofa or in bed. You can work through the doctors posted materials in this way. Can’t stay in any position for very long. We are a bunch of wiggle worms!

        Make it a good Sunday. Wish ya’all a good week. Getting through the day is less difficult if we hang on to our sense of humor, if we try to be hopeful, to envision a better tomorrow. GOD bless us, every one.

        For Nanny Bug and others…

        I was thinking more about Nanny Bug and others by extension who have mentioned suicide. I have learned that we should ALWAYS take this seriously. I wanted to add that some people say that if you feel you can not go on, you can ask GOD to take you home early. HE will find a way to do that if you are sure it is what you want or need. Be patient and the way will reveal itself in time. This is better than suicide, it is more comforting, more peaceful. Also it is important to remember what any physician will tell you. Sometimes suicide does not work and one is left more damaged from the attempt. If you pray for release your loved ones will be less hurt also if you elect to ask to go “home”. But please seek counselling first. Do not think that advisors will just try to talk you out of it. If you go to a good counsellor they will talk with you respectfully, in an understanding way and suggest alternatives and things that may not have occurred to you. From what I have read you will not go to “Hell” because you opt to leave this life early. Most people would understand if they knew what you had to cope with. Finally you did nothing to deserve what you are experiencing now nor did whatever higher being you may believe in allow this to happen to you. As I understand it because of free will GOD can not interfere, can not rescue you but will be there with you. GOD can be anywhere at once, can be with you and others at the same moment. When you hear a little voice it may be GOD. HE speaks to us this way. Learn to “listen”. HE speaks to us in dreams also. You can learn to distinguish HIS from your own dreams or messages from loved ones who have crossed over. Believe. Remember this is what faith is. It does not matter if you have not believed, your soul knows. Finally know that suffering deepens your soul, enriches your spirit. It seems a strange gift but it is the truth. Make sure you consider this before you ask the great spirit to make a way for you to leave this life early.

        Bejah

        • anonymous says:

          Bejah the reason that mesh will never be taken off the market, in my personal opinion is that there is to much money to be made off of mesh! Again in my personal opinion there is money paid to people to make sure mesh is never taken off the market. No one will tell the truth about money taken under the table except Donald Trump. He said he has paid money to people so he can have in roads to some things. It is an American way of life in Politics and the government. It is no secret but finally someone will tell the truth!!! We have been told to be quiet and not say anything. Again this is the American way!!!

          I heard from a friend that her sister got $48,000.00 after attorneys fees and medical. She only had the mesh put in and then taken out because she was afraid it would cause problems. While the truly severe injured sit and wait and wait. But $48,000 would just be another slap in the face to me. True a good settlement would help me to search for more help if I chose to. But after so many many years of doctors, tests, needles, surgeries, meds and so on I don’t want to see anymore doctors. I just can’t fight anymore for a healing. No amount of money can ever give us health again, no amount of money can restore families and lives changed forever. I do wish the companies could be punished but lets all get real here too. They have lots of money, money no one even knows about. They have been in big business long enough to know they will never suffer like us, never. The only peace I have is God is watching!! As a believer that helps to steer my course in this life. If I was one of the big medical company employees with the knowledge of all of this I would be terrified what my God will say to me.

          As far as wanting to go home to my Lord and Savior Jesus yes I do. No I will not take matters into my own hands but I pray daily that I can go home soon.

          You see I never ever wanted a short life. I never wanted to leave my family alone. I had dreams of traveling and going places where very few others go. I had plans that would have come together if I could have kept working. I had dreams of my family all coming with me at times and oh how much fun we would have had just like we had in the past.

          But now they have moved on with their lives as they should. the laughter and the dreams all gone. To my family I say to them how sorry I am. I never wanted this but this is what I got. I will try to be strong for them as long as I can. When someone dies rejoice if they are saved and know Jesus, because they are in the arms of Jesus now. They feel no more pain or sadness. We cry for ourselves because we think they are gone forever, not true! We will see them again. So pray that Jesus sends his grace to you too.

          I sit here every day in pain. Pain that is the first thing that I feel in the morning and the last at night. When I have tried to work past the pain and go out to dinner or try to go to the store I end up paying for it for days with such pain all I can do is lay still for days. So I never go, its just not worth it. I am on pain meds but all they do is make me sick too. The pain meds we take affect the brain! So what is the trade off? Pain or so sick to your stomach so you can’t do anything anyways. I have tried everything from PT, nerve blocks, surgeries and the list goes on. Nothing takes the pain away forever. Everything they asked I have done. I have been told this is my life and my future for ever. We all tell everyone what we are going through. And a few doctors listen more don’t. We all know this is not in our heads but so many don’t listen. Doctors really only want to have people they can heal, we, or at least myself will never be healed again. Attorneys say the understand but how could you until you live this 24/7 365 days a year! Counselors tells us to learn to live with it. Really!!! I wish I could take the pain and damage away, but I can’t. I have my God with me every minute and he has told me to be strong and trust him. I do. But I don’t trust the attorneys, the doctors, or the companies who did this to us. I still live in this world where no one cares about us. I know attorneys do a good job for some but really 30-40%. My only question is how much do you suffer every day forever. We shouldn’t have to sue they know they hurt us. I have given up on anger because it does no good anymore.

          At times I cry and other times I lay still and listen for God’s voice. I pray he takes me home. It will be beyond anything we can ever imagine. He knows my resolve is wearing thin. He knows I dream of a body with out pain and sickness. The sky will be bluer than anything we can ever imagine. We will only know happiness. My family and pets too, yes pets go to Heaven, will be there waiting for me. I am tired of living each day in pain. But I will try to go on the best I can. I wear the scars of this life forever. They will tell my story from this life of my brokenness. I know that Gods grace will get me through this and I pray that my family will also let his grace cover all the pain they feel. You see they lost a mother and a man lost a wife. Friends lost someone they could always count on. Family lost a daughter, a sister in law, a daughter in law etc… She doesn’t come for holidays, birthdays or family get togethers because she is in pain, can’t sit long, runs to the bathroom every 10 minutes and feels embarrassed. She lost herself one spring morning when she unknownly let a doctor put mesh inside of her. From that moment on life changed and the world went on. From that moment on she has been in pain and the world went on.

          So Bejah I do hang on to God and he leads me. But as a human I have reached the point of not much hope anymore. The settlements leave me with out words. I have never been vengeful but with the people who continue to try to get out of paying us what they took from us I wish Gods wrath upon them. I try to stay strong and listen to Christian music. I am a prisoner in my home these days. All I can do is pray for peace and restoration. I know that God is with me through all of this. He is my only hope and my only sense of peace with however this turns out. Sometimes we do suffer in this world. Sometimes he says No to us. But who knows perhaps in some world in the future we and our sufferings will help others to learn how to help Pudendal Neuralgia people not have to suffer so much. But when I take my final breath and the pain is released from this anguished body, I WIN!!! FINALLY I WILL WIN. And my joy and happiness will be unmeasurable.

          sorry everyone for the long rant but once again it is monday and i will have another week of hoping someone comes to visit me. another week of waiting for something to brighten my day. I feel like I am just decaying day by day. Lord see my pain, my sadness, my anguish and let me be free. I willl pray for all my sister mesh victims, I love you all because I know what you are going through. Hang on to God however you see him.

          • stopmeshimplants says:

            Dear Anonymous,

            There are many of us who have shared your thoughts. Please remember you are

            not alone. I have to believe life will get better and we will get the help we need to

            alleviate our pain. Keeping you in my thoughts and prayers.

  37. kitty says:

    I can’t wait until we move to our new apt this coming month—huge bathtub with grab bars. THANK U Dr Vigna for validating pelvic floor therapy. Cant wait to get relief under water doing pelvic tilts and bridges. I AM CRIPPLED AT THIS TIME. BARELY ABLE TO WALK A BLOCK

  38. Bejah B says:

    The FDA position on mesh:

    I was just reading through Dr. VIgnas writings on his site. Please note the following paragraph. I did not know, did the rest of you that the FDA allegedly “Refused to issue a recal”l for mesh? I am shocked. Had it said they were considering it and opted to study the matter for a time but that is not, it seems, what the FDA said. This is deeply disturbing methinks!!!!!

    According to the Life Care Solutions Group, one of the most common questions asked by many women today in light of the information revealed about related health complications is why hasn’t there been a recall on mesh devices? The group notes, the FDA’s advisory committee did meet in 2011 to discuss the matter; however, the panel refused to recommend a recall, to the dismay of medical professionals and many others. Instead, the agency called for product safety reviews to be conducted by makers of transvaginal mesh devices.

  39. Bejah B says:

    Regarding medication:

    File under DID YOU KNOW,,,(I did not) that the following pain treatments are an option, that is they do exist. Why didn’t anyone tell me this or any of you who may not know and could benefit from these:

    (1) There are Vicodin suppositories that I’ll bet would help with Vulvodynia and related pain

    (2) There are pills made of Marajauna (sp?) that one can take to treat pain.

    I am so sick of the anal retentive posture of “medical professionals” regarding treatment of pain. Do they think we are making all of this up? I am really beginning to think they either do not care or are so paranoid about the FED breathing down their necks they are paralyzed with fear. My pain management doctor talked to me about the harrassment he endures…they threat that they will take away his licence if he does not do exactly what they demand. Do we have a bunch of Nazis running the country now? And today I learn that the FDA has refused to remove the mesh from market. I have been waiting for warning III…I guess there is never going to be a warning III, a reclass to Cat III. Where GOD do we go from here.

    Bejah

  40. Bejah B says:

    Here is information on the individual at the FDA who may be directly responsible for an alleged REFUSAL on the part of the FDA to reclassify mesh or presumably issue any further warnings or notices regarding it (Refusal seems a rather final word don’t you think?). I suggest we all contact him and tell him what we think of this. There is a probability, no doubt rather high considering the subject at hand and how the agency is managing it (Based on Dr. VIgnas reporting) that our communications, even if there are to be thousands of them, would simply be thrown away but I think personally we should do it anyway…vent appropriately for the cost of a postage stamp. It is one thing we can still afford. Here is a short profile. You can go to his personal website for Vid stream or of course to UTUBE:

    DR. WILLIAM MAISEL (See photo at his website…pictures tell a thousand words they say)

    Deputy Director for Science and Chief Scientist at

    the FDA’s Center for Devices and Radiological Health

    Dr. William Maisel currently serves as the Deputy Director for Science and Chief Scientist at the FDA’s Center for Devices and Radiological Health. In this position, he provides oversees the implementation, development, management, execution, and direction of the Center’s national biomedical science programs. A major focus in his position is to ensure the safety of medical devices.

    • He attended Weill College of Cornell University received his Doctor of Medicine.

    • He attended Harvard School of Public Health received his Master of Public Health.

    Before FDA, Dr. William Maisel was an Associate Professor of Medicine at Harvard Medical School. Has 15 years of experience as a Board-certified cardiologist. Published 120 research manuscripts, book chapters, and scientific abstracts on regulatory science, device innovation, and medical device safety and effectiveness.

    Agency FDA

    Organization DHHS/FDA/CDRH/OMPT/CDRH/OCD

    Job title DEPUTY DIRECTOR FOR SCIENCE

    Building WO66 Room1678

    Duty station Silver Spring MD 20993-0002

    Phone 301-796-5900

    Fax 301-847-8510

    Internet e-mail William.Maisel@fda.hhs.gov

    Sorry if I seem a bit intense today, I am out of pain medication. Thanks for understanding, dear people. FYI I am going to try to locate and read his papers on certain devices. Anyone want to help me? 🙂 Needless to say I am also going to send Maisel a little love note. I am going to get into the rum now (= pain killer and no f—–g FED can tell me I can’t)!!!!

    Bejah

    Bejah

    • Jane Akre says:

      Good article. The CDRH has had plenty of problems……

    • Bejah B says:

      Anon posted a link to the website where the following was posted. Reference my post on Maisel in same time period. I respectfully ask that this be posted here because I believe that the possibility that there has been collusion between the FDA and Johnson & Johnson on the issue of pelvic mesh and I intend to write to the Whistleblower organization referenced to outline my theory.

      The fact that this individual who represented the Devices section of the FDA was arrested points to the possibility that the problems at the FDA may go far deeper simply because it speaks of his lack of ethics or honor, nor should we assume rspectibility where there are impressive credentials.

      All of us need to participate in these kinds of efforts. If we do not help ourselves no one else is going to either. Keeping the mind focused on a task keeps it from being obsessed with pain, I will send Jane a copy of my letter before I send it and ask her to proofread for me and she can also post it here if she feels that is appropriate.

      With regard to the FDA’s underbelly, remember, when you kill one cockroach there are hundreds more behind the scenes (at the FDA) that you do not see. Maisel is just one cockroach (If I ran the world he would be without the cock). We need to invstigate all of the key FDA people including those they associate with in their professional and personal lives and in this day and age we do not need a private detective to do it nor can we depend on law enforcement (With all due respect). If each of us could investigate one key person that would help a lot. We are not well, and we grow tired so easily, so we really need to all help.

      Here is the piece on Maisel and the FDA, not new news but still important, still relevant:

      April 24, 2013 By Steven E. Greer, MD

      In July of 2012, the New York Times reported on an FDA scandal of the agency spying on internal whistleblowers, by hacking into their work and personal emails. The FDA employees who were the victims filed lawsuits, and The Healthcare Channel interviewed the plaintiff’s lawyer, Stephen Kohn.

      One month later, a senior FDA official who was named as a defendant in the lawsuit above, William Maisel, MD, PhD (a former Harvard cardiologist), was a arrested in a Maryland suburb on five counts relating to soliciting a prostitute. The story was not reported well in the national press and the fate of Dr. Maisel at the FDA had been unknown.

      On April 23rd, 2013, the FDA issued an email announcement from Dr. Maisel, still employed at the agency, about an upcoming conference call on medical devices. We asked the FDA for a comment, whether he was disciplined for his arrest, etc. The FDA replied, “As you may know, we have a long-standing policy of not discussing personal or personnel matters. Dr. Maisel is still employed by FDA.”

      We investigated the Maryland criminal court records and learned that Dr. Maisel pleaded guilty to one of the prostitution charges, received a $200 fine, and agreed to probation. The other charges were dropped.

      The FDA’s medical device division, CDRH, has long been plagued by industry bias and corruption. In 2009, the CDRH Director under President Bush, Daniel Schultz, was forced to resign after numerous allegations that he ignored the recommendations of FDA medical officers and approved devices against their recommendations. Jeffrey Shuren, MD, the new leader of CDRH, initially tried to implement tough standards for medical device testing. After industry lobbyist pushback and strong congressional support for the medical device industry, he quickly made a 180 degree turn and loosened approval standards by allowing many devices to still be approved under the 510K pathway without clinical trials.

      It was under Dr. Shuren that Dr. Maisel was hired from Harvard. At Beth Israel in Boston, Dr. Maisel had formed a medical device industry watchdog institute in response to the numerous recalls and safety problems related to ICDs. After receiving the cushy government job at the FDA, Dr. Maisel softened his tone and has made no public attempt to improve the MAUDE database or require clinical trials for implanted medical devices, such as orthopedic implants.

  41. Kitty says:

    OMG how corrupt ——thanks guest

    What happened to all the requests we gave to FDA ——Crooks Why would I want to wate my time contacting Maisel. Nixon looks like a choir boy now. Who gave tons of money to Michelle Obamas previous employer? Oh yeah oh yeah

  42. Kitty says:

    Contact Donald Trump if you want the truth. Liquor never touched his lips and at least he married his women.

  43. Bejah B says:

    Just received notice from Intersistial Cystitis Assoc. that Accupuncture helps with pelvic pain, FYI. I remember the first time I went to have accupuncture. I began weeping uncontrollably for no particular reason. It was the release of the tension in my body. Wow! Very powerful. I went to a different person a couple of years later and felt nothing. The person makes all the difference. Encourage ya’all to try it if you have not just based on personal experience. I should add that my insurance covers it thank Heaven or I would not be able to afford it now that I seem to be old and poor, big business and naive reasoning having taken almost everything from me.

    Now I buy my groceries at the dollar store (They get some things from Trader Joes BTW so worth checking out). I put chopped celery heart from there in my Fetticuini last night as an experiment and it was very good. I was surprised. I also added sun dried spicy tomatoes, Lawrey’s salt, basil, sea salt, olive oil and butter.

    Anyway suggest checking out the IC website and bookmarking it, etc.

    Also, did I mention the free Neurology magazine that many of you probably came across at your Neurologist’s office? One can subscribe to it and it will be delivered to your home. It is worthwhile even though there are a lot of drug ads which can simply be ignored. The new issue just came and it has articles on a woman whos father has MS (Have not read it yet) and one on having an end of life conversation.

    We are so afraid of death we do not talk about it and this is so sad, such a mistake. I have a binder that has my Trust, letters and essays I have written, and articles like this one in the magazine. My mom and I talked often in her last years about death, Heaven, angels and all sorts of things. She had a very healthy attitude about it and was not afraid so it was less devestating when she passed away in 2010. Having said that losing a mother is like no other loss. It is brutal. it must be as impossible to come to terms with as losing a child. Families should talk about death. It is a part of life and we create darkness when we exclude it just as we do with anything we “shove under the rug”. For many reasons I now know it to be a beautiful transition but that does not mean I am not afraid. My fear is tempered by knowledge, belief, faith. It is a great comfort. Let faith in. It is like flooding your rooms with sunlight.

    Bejah

  44. Bejah B says:

    Where is everyone? Later today I am going to post a link to a site that I found very, very helpful and also one that deals with something I find frightening and mysterious….the primary subject is pelvic floor physical therapy. I have much to learn about this and how it can help us all and found this site very helpful to say the least. Here is an excerpt from one of the sites I visited (So many terms I was unfamiliar with, and so many I identified with like “sit bones” and others…so helpful. I had many of those “So I am not the only one” moments:

    Incidentally, both of these patients likely have the same symptoms—burning at their sit bones that worsen with sitting. However, the treatment plan for each of these scenarios will be quite different. Indeed, many patients with the exact same symptoms will have very different objective findings. Often I have to explain to my patients that having pain with sitting does not mean that they have entrapment. Numerous impairments cause pain with sitting.

    or this:

    Aggravating factors such as repetitive yeast or bacterial infections can sensitize the nerve. In addition, there has been shown to be a correlation between PN and Endometriosis, Vulvodynia, and IC . To be sure, we know visceral disease states can affect peripheral nerves and it is plausible that nerve irritation can irritate visceral structures.

    Don’t know about ya’all but I had Endometriosis, have Vulvodynia and IC…now I am going to search for an expert pelvic floor PT in my area to see if they can help me.

    I think I came to these sites by way of Dr. Michael Hibner and Dr. Mark Conway. Also Sarah Sauder is one of these special P.T.s and may be able to recommend others in many areas of the country who trained with her. Will find the addresses later for you. Do read here…invaluable for us. We will probably know more than our physicians about this post read, something we will just need to accept and if they are not resistant perhaps we can leave materials with them to read so that they might learn to be better doctors. If they are offended, it may be time to move on.

    Take care everyone.

    Bejah

  45. Still Standing says:

    Pelvic floor PT I so absolutely essential. For my physician, that the a a first line of treatment. However, many of us go into PT thinking they will do the work and we will show up for each appointment but fail to do the work at home. This will not be too helpful. Be actively involved your care and make sure the PT teaches you how to use the exercises at home. Also, order from Amazon the book by Isa Herrera called Ending Female Pain. That book became my survival manual. She has a physical therapy is practice in NYC. It is an amazing and must read book! . BTW: you had a couple of nonos on your fettuccini. Spicy tomatoes, lowrys salt . My doc calls the IC diet the water and card to and diet. Appetizing.

    • Bejah B says:

      Thanks Still…

      The pasta no no’s, I know. Sometimes I throw caution to the wind and I feel I am dying anyway so…

      Thank you for ref. re book and the notes on your experiences. I personally can not seem to get past the sense of violation and worry I will be hurt but I am reading a lot to get up to speed on this strange world I knew nothing of. I wish I had a doctor I could talk with about it. My Urologist will not even examine me any more. I guess he wants me to leave. So sad. All of it….

      Bejah

      • Jane Akre says:

        I cannot imagine a doctor abandoning a patient in their time of need, but sadly, we hear these stories every day. I’m so sorry.

        • Disgusted says:

          Yes, so true, so sad. If it can’t be fixed by a pill, then I don’t want to see you. I think it falls under “this is not my responsibility, not my mess, I don’t want to be involved.” Hard to stomach. I hear you Bejah, so violated, so mistreated. Learning so much more than I ever wanted to know. Hopefully doctors of courage and wisdom will start to step up and pick up the pieces. We needed them a long time ago.

  46. Bejah B says:

    I was able to scrape together the money for my pain medication and it was supposed to be delivered last night but it was not. It seems there was some confusion and it was mailed. They told me this morning it will come in the mail today. I did not know one could send controlled substances throught the USPS! I hope it comes. Mail is at 2:30pm more or less, about three hours from now. I will try to sleep until then….here is my offering for now:

    FILE THIS UNDER BLACK HUMOR:

    There is another way to deal with pelvic organ prolapse. Here it is: You can avoid swings and hammocks and all of that stuff made out of the toxic mesh. I’ll bet your doctor did not mention this. You can simply have your self sewn up down there. Is that not hysterical?

    Maybe doctors do not make much money doing this and some are not candidates for it, for obvious reasons but I would rather have that than be rotting away with this petromesh inside of me.

    I will post more when I feel a little better.

    Bejah

    • Bejah B says:

      Well my pain medication was delivered by courier so I guess controlled substances can not be mailed via USPS, unless maybe registered mail. Just FYI. My pharmacy did not even charge me for the courier service. It is so nice to have some people in your world you an trust. I am starting to see blurred colored lights in the periphery of my vision…are my eyes going now too. Thank Heaven for vision insurance.

      Tammy, Don’t get lost in the quicksand of the past. Live in the present, think of possible tomorrows. Dream, Make a collage of all the things you want in your life. Use old magazines for source material. I do collages a lot and it is good therapy and a good way to come to know yourself and more importantly it keeps your mind occupied on something other than the horrors you have experienced. I personally believe in Karmic resonance. Those who harm others will not escape the consequences of their actions. None of us can. Find your center. FInd your sense of humor. “Laughter is the best medicine” …watch the Comedy channel, your body will laugh even if you do not feel like laughing. The defendants want you to feel defeated. Do not give them that.

      Bejah

  47. tammy says:

    I just would like to know why these lawyers say the goverment has nothing to do with this what joke im done with all the bull sh## they do care thats it wake up every one im hommless have list every thing an still being told lies when will it stop please god help me for give me for trusting the greed

    • Bejah B says:

      Hey Tammy, I know….we can move to Hawaii and live on the beach or establish Tammys Refuge for Meshed up Women. We can all go around in sarongs, no painful underwear, have bonfires every night, sing and tell stories and have beautiful ceremonies when one of us passes away. Must like fish!

      With regard to your post, …and then they try to tell us we are lying!!!!

      Hang on to your sense of humor girl.

      Bejah

      • tammy says:

        Hey sounds gound too me i have lost it all any way i have my good an bad days but i keep trusting in god but to think i let this happen to me just makes me even sicker an this is all a joke lies an bull sh on here the goverment does not give a damn about what has happen to me very sad no one should have to wait 6 years for any thing this is crazy am i just want to all go away please god help me

  48. Sheryl Teague says:

    Seriously feel like my help and my hope is too late. So much lost (physically, financially, in my marriage and career wise…not to mention my pride and self-image) and after so much given and dedicated to, removals and reconstructive surgeries, embarrassing vaginal therapy and urodynamic defecocgraphy testings. Then there is the hematomas, UTIs and so on…and now I need a Sacral colpopexy and sacral fusion due to my post-mesh removal returned cystocele ( only now can’t have a BM normally and now have a severely unstable pelvis. I just feel like one of those 2% who were left in the dark to die. Good luck to those who still have it in them to fight…please be a hope to all out there as many are truly suffering in silence as some lawyers don’t have time for them either.

    • Bejah B says:

      Sheryl, You are not alone in that dark place…so many of us are there with you. Some say that we can learn to refine our intuition and learn to see and feel through the dark, find eachother in spirit, find shafts of golden light splitting the dark. Dark can not survive where there is light. Be a person of light. No matter what your circumstances are and I believe we know them to be horrific and honor your pain, you can still make a choice to be a peson, a being of light. Please make that choice. Please do not give up. I vow to never give up and I tell you I have been in very dark places. Keep moving, keep your body moving. Do not lay in bed staring at the wall, your mind empty or fighting off demons. When I first started running years ago I used to go out with my uncle and we would run at the beach. He was a retired Naval officer. I would get tired and feel I could not go on but he told me to keep running, to push through since nothing hurt. I learned to run like an antelope, like the wind. It was wonderful. You too, you can push through, clear out the cobwebs, throw open the shutters in your mind because ultimately you are not your body, you reside in your body, you are eternal. Shift your thinking, think like an eternal being.. Replace every negative thought with a positive thought (And there may be a voice that says “Forget this, this is absurd” but do not listen to that voice. Praying for you.

      Bejah

    • Greg Vigna says:

      Things are turning. The next chapter begins soon. There will be news.

      I am with you.. please believe and hold on.

      GV

      • anonymous says:

        Sheryl I understand your story could be mine I just exist day to day my hope and faith is running on empty

        I trust God not man and attorneys can’t wait to get you off their back it seems. Just frustrated and empty more. I have no hope to be paid what i deserve. I am not greedy just want to be paid for all the medical wages list and pain not to mention a life destroyed by mesh! Give us some hope dr greg!!!!

      • Barb says:

        Greg, as busy as you are I appreciate your time and postings!!! So glad to hear you are getting somewhere!

  49. guest says:

    any update on the outcome of this suit meeting?

    The next Case Management Conference will be held for GYNECARE on Wednesday, August 19, 2015 at 2 p.m. in Judge Martinotti’s courtroom 359 (Rotunda Building). Liaison Counsel for Gynecare shall report at 1 p.m. for a pre-conference meeting.

    • Greg Vigna says:

      200 Cases remanded to State Court. Hopefully the cases have been medically case managed like mine, and a life care plan fully developed to capture every cent from JNJ.

      We will see.

  50. Bejah B says:

    Hello Everyone, Here is the announcement of a meeting of the FDA devices COMM mtg in Sept. Think they are going to talk about mesh? Think again. Also big news at the FDA re women’s issues seems to be (1) Rendering women sterile, and (2) Addressing the problem of women who have sexual desire problems!!! I say F–K the FDA, what say you????

    Obstetrics and Gynecology Devices Panel – Medical Devices Advisory Committee

    September 24, 2015

    FDA White Oak Campus, Silver Spring, MD

    The committee will discuss the risks and benefits of Bayer HealthCare’s Essure System for permanent female sterilization.

    Bejah searching for some good news….

    • Barb says:

      I saw that as well Bejah!! What does that have to do with the mesh?? Thinking maybe trying to steer away from we meshies!! Personally I don’t care about sch a thing get to the REAL ISSUES!

  51. Stella says:

    Thanks so much for posting this article. I am suffering with horrendous pain due to the Gynaecare total profit mesh. Standing , walking, any pelvic movement escalates the pain and sitting on my buttocks is intolerable. So even a wheelchair is out. I am now walking with the aid of crutches to take the weight from my pelvic region. I also have weakening of the legs. I am unable to have invasive tests as one year after surgery I had my first TIA ( mini stroke) and have had 3 more since. I am on warfarin with an INR between 3 and 3.5 If I drop into the lower INR numbers I experience TIAs. So my question, are there any that tests can be carried out to see nerve damage that aren’t invasive. Are there any specific MRIs . I have had ultrasounds which doesn’t show up nerve damage.

    Thank you so much for sharing and caring. Kind Regards Stella

    • Bejah B says:

      Dear Stella, Wandering around the Internet from a starting point at the website of the doctor that is the subject of this report by Jane, I came across a lot of very helpful information….so much I knew nothing about. Evidently it is not taught in medical schools either (One wonders what is taught at meical schools). Here are some notes that may be helpful to you:

      Sara@Sullivanphysicaltherapy.com – Sara is a pelvic floor PT as I understand it. I do not know if this address is still good for her but you can google her name. She is a colorful character and often uses very colorful language but she is also vey knowledgable from what I can tell and well worth reading. Remember knowledge is power.

      The Pudendal Neuralgia Association is a new group for people with sitting pain. The organization began in 2013 and it’s goal is to be a resource for patients and their providers. Yes – for their providers….

      GOOGLE (Search for these words, people):

      Dr. Hibner and Dr. Conway and Stephanie Prendergast.

      Amy Stein (of Heal Pelvic Pain),and Dr. Deborah Coady (of Healing Painful Sex).

      PUBORECTALIS.

      The anorectal muscles

      The Better Bladder Book by Wendy Cohan (She is an RN)

      The V Book by Dr. Elizabeth G. Stewart

      When Sex Hurts by Andrew Goldstein, Caroline Pukall and Irwin Goldstein

      Pelvic Congestion Syndrome…symptoms are:

      * pressure in abdomen/pelvis

      •pain in the legs

      •pressure or pain in abdomen/pelvis/legs that gets worse at the end of the day

      •pressure or pain in abdomen/pelvis/legs that improves with lying down

      •pressure or pain in vulvar area or legs from pressing on abdomen or doing valsava (bearing down hard)

      •assymmetrical labias that became assymmetrical later in life

      •pain with sexual intercourse

      •pain with periods (or history of pain with periods)

      •urinary frequency or urgency

      •veins in the pelvis that are really easy to see

      •spider veins in the legs

      Mind Over Medicine by Dr. Lissa Rankin (Was OB/GYN, suffered from pelvic pain)

      Healing Painful Sex by Deborah Coady and Nancy Fish

      When Sex Hurts by Andrew Goldstein, Caroline Pukall and Irwin Goldstein

      interventional radiologists

      *****venography**** ((Imaging of the veins): Venogram – Dye is injected into the veins so that your doctor can see if you’ve got distended veins. If you do, it will be clear to see if there are just a few that are an issue or if there are a whole lot of problems. This is considered the best way to diagnose pelvic congestion syndrome. This can be done with you asleep, so ask how your doctor does this.

      And finally this quote from Sara Sauder: “My doctor doesn’t believe in pelvic congestion! Ya’ll, we’re not asking your doctor to believe in the tooth fairy. If your doctor doesn’t think that your set of symptoms could be due to varicosities in the pelvic veins, find a doctor who does think that this exists in the realm of possibilities for you”.

      Hope you find something helpful here. Take care,

      Bejah

  52. Bejah B says:

    Dear People, A wee bit of additional information that may be of interest. I do not know this physician and I am not recommending anyone, I am not qualified to but it all sounds worth investigating:

    Dr. Dellon is a plastic surgeon who specializes in the treatment of peripheral nerve disorders. He is located in Nevada and Maryland and is the director of the Dellon Institutes for Peripheral Nerve Surgery. He is the author of Pain Solutions which can be downloaded for free off his website at http://www.dellon.com . Dr. Dellon is the past president of the American Society of the Peripheral Nerve and is the former Vice President of the American Society of Reconstructive Microsurgery.

    Bejah

  53. janet says:

    With all the facts and proof of what this stuff has done to us all

    Why are we still sitting with no settlements from these damn manufacturers.

    There has been no news regarding any settlements are talks with any of the manufacturers

    When will it be enough to finally get what we women really deserve from these manufacturers

    The FDA needs to be fined also

    They knew all along this stuff was deadly

    We need answers

    Judge Goodwin has really done nothing to move these cases along

    • Barb says:

      Correction Janet there are settement talks going on and some manufacturer’s are settling, AMS, and I believe I read 2-3 other are considering and working on a plan. However for those JNJ unfortunately will most likely be having a conference with Judge Goodwin and be ordered!! He seems to be constantly on the other’s but not PUSHING JNJ so much!! Go back into Jane;s archives and you can pick a month and somewhere you will find the ones who are.

      • anonymous says:

        Dr. Vigna please tell me what a person should do post surgical for pudendal neuralgia and still has severe pain. Also I have a question, or perhaps a statement. Isn’t it possible for other nerves to be damaged when surgery is done? I mean if you look at the anatomy of the pelvic region and all the nerves that run through it, is it possible for other nerves to be hurt. Which nerves would be the most likely to be damaged? What exactly does a life care plan say exactly? I have a problem that is unique and I am scared to death. But because we have been told not to talk I am very hesitant to go into details. Needless to say I have been referred to a neurologist for further eval. Doctor, please tell me when this nightmare will be over. Please tell me where to go for help! I have had PN surgery. I have had PT and they made it worse! I need help because I am desperate! I dont know where to turn now. Is there no help for me?!

      • Bejah B says:

        Maybe that is because JnJ will push back!

        Bejah

    • anonymous says:

      Amen! I was told that Judge Goodwin was a sympathetic caring man but I haven’t seen one ounce of that evidence at all regardless if its the year 2015 or not we are women we are not cared about we are whining complaining beings according to most men we will never be paid what we deserve I believe unless there is a top figure in this world that starts an investigation and I don’t think that will ever happen my only hope is in God it somehow some way America will come out of all of this because if I don’t get paid what this is worth I will have no life

      • Bejah B says:

        And Anon.,

        There is no monetary value that can truly compensate for what has been done to us. It is probably true that many of us will never get anything in these cases that have been filed for us. Some will but it will be what we might call a compensatory and perhaps punative symbolic compensation. Even the states we live in will swoop in and take up to 70% or more of awarded punative damages which is despicible and illustrates the level of greed that exists where money is concerned.

        How many cases are on appeal now where there was a favorable verdict for the plaintiff? Your attorneys knew this would probably happen yet chose to represent you and we should commend them for that. I think that most of them are NOT in it for the money only and in fact that is probably not the primary motivating factor. We should not be suspect of them all. That would not be fair. We must be just, and “be the change we want to see in the world”, and do what is right no matter what happens.

        The FATHER is said to have stated through HIS SON that money is the root of all evil. I see many of you cry out, where is the money! Where is my compensation! The truth is many of us will never receive any compensation. What may happen is that as time passes, and a brighter light is shone on this matter there may be new cases in the years to come based on broader criteria and then more of us will be able to file an action against the manufacturers. Those who are offered a settlement now will, as I understand it, NEVER be able to file against the manufacturer(s) again. That is what the defendants want. That is, IMHO, why the parameters of these cases, is so narrow. I believe there is collusion (Did I spell that right?) between certain individuals at the FDA and the defendant corporations and I will work to prove it.

        I still say that what I would love to see is groups of us gathering in living rooms across this country every two weeks or so to talk, have self directed group therapy, share storied, concerns, make plans for action. Maybe what we have done is not much, as these things go, but it is something, it is genuine, it has substance and it is worth doing. The defendants want us to retreat to our homes in pain, physical and psychic, want us to feel defeated, helpless, hopeless….they want us to feel our efforts are an excercize in futility. Please do not give them that regardless of what happens. As Jane said, even where they appeal (Standard op. procedure) we have won.

        Remember the power of positive thinking…and shopping! I love going to thrift shops and antique shops and garage sales because I am recycling and not feeding some corporation that is selling what they call “The latest trend”. I would also like to see us, as a nation, return to the home vegetable garden and grow our own food. The man across the street from me just got three hens so he will have his own eggs. I love that. I am going to put in raised beds and plant fall vegetables without pesticides and hormones. They may not be pretty but I know they will be much better for me, fresher, and relatively free. Once you get them going all you need to do really is water. This is my response to bad corporate citizens. This is another way we show our power.

        We can choose what to buy and many of us are not buying Johnson and Johnson products, for example. Imagine if no one bought their products any longer. It would force them either out of business or to change their business model. What worked in the past will not necessarily work in the future.

        The other thing we can do is vote so we are far from powerless or defeated.

        This is why we must not wait. Our lives are passing by while we wait. My attorney told me not to wait, but to just live my life as it is or in a very real sense we will lose that as well. This was a very bitter pill.

        Today my friend and I went out to thrift shops (I call it “Thrifting”) and then went shopping for supplies and dog treats for our beloved companions (our dogs, not our husbands) and then went to lunch. It was a lovely day. When I got home I was so very tired as I often am these days so I took a nap (and the dogs came in to snooze with me). Had I stayed home and fumed and researched and wound myself up I would have lost this day. The defendants are NOT going to take my life from me in this way too.

        We are still alive, we are still able to see and move and feel and laugh and cry and you know what they say, “When the going gets tough, the tough go shopping”. We can still go shopping. Also, still the days are long and full of light…it is still summer but soon fall will come and the darkening of the days and the winter will be harder for most of us so make lemonade (Literal and figurative!), bring in some flowers, bake cookies. go to garage saies on the weekends, go to church if that is meaningful to you. Live!

        Bejah

        • anonymous says:

          Bejah thank you for trying to bring positive light to a terrible situation but the fact is girl I can not go shopping anymore I can’t walk hardly because of pain and other issues I can’t bake cookies go get flowers garden or do any of that as far as the money part of it goes I’m on the verge of losing my house I don’t make enough money to even feed myself during the month so yes I do need some money to compensate for all the lost wages I am NOT greedy I am NOT evil because I want to be compensated for what I’ve lost I’ve lost most of my life. I can’t do things like you described I can’t go antiquing I can’t go shopping I can’t do so many of those things because of physical and money problems I applaud you for trying to bring a fresh new perspective to all of us I applaud you for saying hang in there and stay tough but some days being tough is all the energy I have

        • anonymous says:

          Dr. Vigna can you please tell me if other nerves around the pudendal nerve can also be damaged and if so what should we as women look for. I’m just concerned that we’re concentrating on the pudendal nerve which is the most commonly hurt nerves but if theres other nerves that were not aware of or know what the symptoms are they may be overlooked and we may never be compensated for them or treating and gotten any better. We mesh sisters are the only ones that seem to be able to dig and dig and dig until we find out what’s wrong with us because simply put the doctors don’t know we are pioneers and we must stand up and find out what’s wrong with us and find out how to heal it when we have to do this for ourselves but we can’t quit fighting. Otherwise like me you’re almost took your hand and you just give up fighting so if you could please explain any of the nerves that might be hurt and what the symptoms are I think we would all appreciate it. I’m not saying there are other things people to be worried about but there just might be

        • Anonymous says:

          Women and men with true pudendal neuralgia or this especially with multiple damaged nerves and other serious complications will struggle with those activies. So much harder than most people can imagine and why Dr. Vigna wrote what he did. Confirmed by anyone who understands medicine and human anatomy: injuries like these are devastating and quality of life is often poor. To sit for long periods or perform many activities takes tremendous effort and a lot out of them. Treatment to maintain even some normalcy is extensive.

    • tammy says:

      Amen to that because the fda. Is the goverment a they do not give a damn. Weather we live are die very scary an sad for all of us we were used an butchard its real lies that what is going on hrer wake up people

  54. Stella says:

    Thanks for the reply Bejah and listing all of the above re pelvis pain and congestion, however my question was what tests can be carried to show nerve injury in the pelvic region. I have mesh implanted in me , its in my anus, vagina and tied with arms across my buttocks and pelvic region. So was looking for information re what diagnostic tests can be carried out .Thank you

    • Bejah B says:

      Hi Stella, At the bottom of my post VENOGRAPHY is mentioned and that I think is imaging of the veins so that may help you, I hope. 🙂

      Bejah

    • Disgusted says:

      One test that can be done is a pudendal nerve block. It is a diagnostic that indicates whether it could be pudendal nerve damage/neuralgia. If there is relief, it is considered positive. They do it 2 -3 times several weeks apart. It is only one test. From what I understand they can’t really say the nerve is compressed until they open us up and look at it directly. MRI’s might be able to help – but they’re far from definitive. Read the links on this page – they explain in more detail. I hope it helps!

  55. guest says:

    I took my mom, who is very sick, to Northside Hospital ER yesterday in Atlanta, Georgia. They had no idea what TVM Surgery was and kept asking over and over how to spell it, what does it mean, ect. I explained how sick my mom was and the ER Dr. asked her, “Why are you here? I can’t treat you. Go back to your PC doctor. Or I can give you names of specialists to treat your sickness DEAFNESS and pain or the problems in your ear, nose and chest. If antibiotics don’t work and pain meds don’t work, there is nothing I can do… ”

    Well, blow me down.. A patient can’t get in to see a specialist with Northside Hospital for weeks. That is why I took her to the ER. She is that sick. Shame on all of the doctors and companies who are allowing this to happen to human beings. Add Northside Hospital to the lists of hospitals who refuse to help TVM Patients who are sick or who become sick.

    So we left. My mom got home and collapsed. The young ignorant female ER doctor did not care how sick my mom was. She said she could only help her with her sickness if she was having a stroke or an emergency. Why would such a large hospital have such a young resident doctor over the ER during the day, turning sick patients way is a mystery.

    The biggest hospital in Georgia, one of the biggest in the southeast, and they don’t care about sick people. Ok, whatever..

    • Jane Akre says:

      You went to a hospital where Drs. Miklos and Moore have a surgical suite to operate on hundreds of women implanted with mesh gone wrong. They know what TVM is!!! Their offices are nearby. I’m sorry you were treated so shabbily but you were very close to an answer!

  56. Bejah B says:

    Notes from the trenches: I continue to get strange red spots, they come and go. Sometimes they form large bumps with a white substance that seems sort of like pus but not quite. I put Bagbalm, or Arnica salve or/and antibiotic on them and they go away but then come again, not enough so others would notice but still it is troubling. I have never had such a thing. I must make an appt. with a Rhumetologist. I have never seen one before but I think many of us find it appropriate to consult with them. I continue to be so deeply tired all the time. I am still working on symptoms database to give to Jane. If I could stay in one position longer I would probably have a lot more done by now. I have become like a big wiggleworm! I share these notes with ya’all because I think there is value in it, so that if you have similar symptoms we may be closer to making connections to the petroleum mesh (polypropelene…..a black oil by any other name is just as foul). Maybe tomorrow there will be some good news, more good news (ref. present good news out of Seattle).

    Bejah

  57. PLC says:

    Dear Dr. Greg Vigna,

    Do you know of any doctors that may specialize in pudendal neuralgia/nerve damage in

    Canada, preferably in Nova Scotia?

    Any help would be greatly appreciated.

  58. Bejah B says:

    I just read in the Reuters piece of a person who felt her post had been rejected. I feel the same way. I also feel that some of my posts are thrown out and I do not understand why. I think it would be the thoughtful thing to do to offer an explanation of some sort and a notification as a basic expression of respect for contributiors. My posts, and most I think y were not offensive, did not use improper language, etc. I think this community is basicly pretty civil, don’t ya’all…so why the deletions. Freedom of expression means a great deal to all of us I think and I think that any challenge to that in this community is like kidnapping one of our children…we are on it in a heartbeat, yes? I think if one’s post is deemed not acceptable that person should be notified and have their post returned to them in case they wish to keep some record of it (In my case a history so that my grandchildren and their children might know who I was, what my values were, etc.). I brief form cover note via email notifying one that their comment had been rejected along with the return of the writing would be nice. PEACE sister…

    Bejah

  59. anonymous says:

    I don’t know if or when I will ever see a settlement from the mesh company. I may be in the middle of moving or living in 2 state, Florida or Maryland. Is one state better than the other to settle in? Does it matter?

    • anonymous says:

      I forgot to mention in the above comment. I have had several mesh removal surgeries and pudendal nerve decompression surgery. I don’t know if that matters.

    • Jane Akre says:

      Many cases are filed in federal court in Charleston, WV, It is called an MDL, multidistrict litigation, and an MDL consolidates cases under one judge, in this case, Judge Goodwin. Some law firms prefer to file cases in state court, which means it may take even longer to get to court but frankly, some of the outcomes in state court have been more favorable to the Plaintiff. It really depends on your law firm and its preference. Do you have a law firm? contact me if you want janeakre@meshnewsdesk.com

      • anonymous says:

        I have a law firm and it is with the MDL with Judge Goodwin. I had asked the law firm today if I should have a Life Care Plan, they said it is determined case by case. Who comes up with Life Care Plans and if they are in negotiations with the device company, I would think they would be able to look up my case to let me know if I should have one.

  60. Nameless says:

    He knew of no other person. Not money. An interesting auto correction given the topic.

  61. MG says:

    I have a mesh that needs removal, lawyer calls after a year or so in one day and says you have 3 days to either take what they offer you or lose all??
    I don’t know what to do I haven’t been able to have my surgery as I am a traveler in medical field and I only have insurance while Im on contract and financial is another issue w/o working no money to live
    any advice would be appreciated,

    • Jane Akre says:

      That is simply not true. I’m not an attorney but my understanding is there is a way to opt out and pursue pudendal neuralgia claims. Please do NOT be pressured. The truth is that you are in the drivers seat…. settling is the only way your law firm is paid its percentage so they want to be paid! I will write you and anyone considering opting out with pudendal issues, please contact me janeakre@meshnewsdesk.com

  62. MG says:

    any info will be appriciated to my previous post thank you

  63. MG says:

    what is the most updated info on the bard covidien mesh lawsuits?

    • MG, if you follow the link below, it will take you to the BARD West VirginiaMDL. You can scroll through the current developments and see where the judge signed orders setting up settlements with Bard and law firms then appointing special council who will oversee the business of searching for those who have a lien on your settlement. It is required that settlement dollars are paid to insurance, hospitals, doctors, etc if they have paid out for your care in the case of insurance companies or if you have outstanding medical bills. You will get part of your settlement before this is done, but they do hold out 25% of your gross settlement to negotiate payment of these liens. Then you would get the balance if any.

      I would not agree to anything without 1st. having it in writing with exactly what you will recover after the attorney gets his or her cut and a full accounting of case costs, which are additinal to the 40% they get, and 2nd, having adequate time to read the document and ask and have answered every question you have about it. If you have not heard from them in a year, you most certainly have not been fully informed.
      This is not an ethical way to treat clients. Just as a further thought, BARD has done settlements based on a tier of injury and women with no surgery have not received much money. You need to ask your attorney what will happen if you decline the offer, especially if your offer is small…they need to be up front with you. They are YOUR attorneys and theoretically should be fighting for YOU. If you settle, you cannot seek any other damages against Bard regarding your mesh damages. It is not a decision you make in three days with absolutely nothing in writing.

      Even if you are not filed in W. Virginia, you can still get an idea of what Bard is doing settlement -wise from this site. Here it is :
      http://www.wvsd.uscourts.gov/MDL/2187/index.html

  64. Kim J says:

    Dr. Greg Vigna
    I am currently receiving Botox injections every three months and have just been told on top of the mesh erosion, pelvic floor dysfunction, interstititial cystitis, chronic pelvic pain- I now have pudendal neuralgia – which I have been trying to explain to them for almost a year one-I cannot sit it feels as though something is stuck inside of me and the pain is quite extreme. I had my first x-Ray guided pudendal block on Sept. 16th and will have the second on October 14th. One thing bugs me is the urologist I have belongs to the hospital of the gyn doctor who initially implanted my pelvic mesh sling so she said she will not comment on whether or not my pudendal neurglia is from my mesh implant. I am not sure what is going on but I suffered from no pain like this until the mesh erosion/ revision took place back in October 2014. I am part of the class action and the settlement I was just offered will no way even cover all of my medical, especially all of these future botox/pudendal block surgeries. I am completely disabled since September 2015 and was just awarded SSDI on Friday. I sent all of my medical records to a Dr. Veronikis in St. Louis for a full mesh removal and I am still waiting on a reply as to whether I am a candidate for his expertise (I live in Philadelphia.) My Boston Scientific sling was part of the Ricoh investigation (for being illegally brought over from China.)
    I am not comfortable keeping any of this mesh in my body as they cannot be sure it will not due further damage. I suffer daily. I cannot sit, sleep, work, do daily home activities, I don’t go out, I pretty much lost all hope and all quality of life. I declined my offer for settlement this round and am currently talking to my own trial attorney as I need help and not the kind of help these class action suit attorneys are offering. What needs to be done for you to offer your services to individuals like me? In the last three- to four months I had to meet with housing assistance as I have missed my first mortgage payment ever, apply for food stamps to feed my three children ( my husband and I divorced over my pain and inadequate intimacy) this has literally ruined my life and the lives of my family. Because in all fairness we are all suffering at this point in time. Please advise if you can assist me and my family in anyway. We would greatly appreciate it- if it is in my best interest in getting an individual trial attorney, would you be willing to assist in my case?

  65. Lilbit says:

    Help!!!! Had vaginal mesh animplanted around 2005 woke up insevere pain!!! Have been deathly sick ever since!! Too much to list , I have pundental nerve damage and have been through all the physical therapy, injections I have fibromyalgia too many meds to list !!! My question is I have an appointment soon to have a cryo- freeze for my pudendal nerve, has anyone had this done???? I have no life left willing to try anything !!! Most nights when I pray I pray for death, The pain is just too much !! If anyone has done the cryo- please reply

  66. Jessie says:

    What about cryoablation for PN has anyone had this at Emory in Atlanta. I have apt to go in 7 days. Please if anyone has tried this let me know

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