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Doctor Directory: Miklos & Moore Talk Transvaginal Mesh

m and m graphicAs part of a series, Mesh News Desk interviews doctors who are dealing with mesh complications. This month it is Miklos & Moore and their http://www.meshsurgeons.com/, International Urogynecology Associates, based in Atlanta, Georgia. A large part of their practice is now dealing with complications from polypropylene transvaginal mesh implants. These are the voices who make up the Doctor Directory, a valuable resource for those looking for mesh solutions to their transvaginal mesh complications. Editor, Jane Akre interviewed Drs. Miklos and Moore and spent a day at their surgical suites.

*Editors Note* ~ One cannot underestimate the stamina it takes to be able to perform these surgeries. They are physically grueling and very intense. More than once I thought I’m glad that is not me a the end of a laparoscopic camera where it is necessary often to cut through tissue, fat and ligaments to find the offending mesh. A rich knowledge of anatomy is absolutely necessary. Your editor walked away with a renewed appreciation of the years of accumulated skill these delicate procedures require.

Akre at M&M surgical suites

Akre at M&M surgical suites

Q:  A woman experiences pain sometime after her mesh implant. Should that be ignored and should she just do what her doctor says, such as go to pain management and give it some time?   

John Miklos MD, urogynecologist

John Miklos MD, urogynecologist

John Miklos “Of course after surgery everyone will have some pain, but it’s the experienced surgeon who asks if the pain is out of the ordinary; is it more than what one normally sees. Now if you are three, four, five months after surgery and there’s a lot of pain, there is obviously a problem. If you do an exam and you palpate the mesh and can reproduce the pain, I believe, and it doesn’t mean we are correct, that with pain that severe, you are better off removing the mesh as soon as possible. Many of our colleagues and conventional wisdom suggest one should postpone surgery and use anti-inflammatories and massage therapy as first line therapy. We disagree because once scar tissue actually matures, usually after five up to seven weeks, the mesh is usually anchored in place very strongly and it won’t dislodge as readily.  I suggest removing it as soon as possible as the mesh is more readily removed completely intact and has less of a chance of creating muscle contortion and secondary nerve entrapment.”

Robert Moore, MD, Urogynecologist

Robert Moore, MD, Urogynecologist

Robert Moore – “I agree with John. There is a balance of postoperative normal pain and healing but there is also severe pain postoperatively that could be a problem and should not be ignored if it is not improving.  For example, a woman gets a TOT (transobturator) sling and she can’t walk the next day or she can’t pick up one of her legs, that’s a severe problem.  At this point the surgeon needs to make a decision – do I act right away, or maybe give it a few days.  But if the pain doesn’t improve, one has to consider early intervention of removal or revision.  The same is true for transvaginal meshes that may go through the sacrospinous ligament and  the patient has so much severe pain immediately postoperatively that is not improving. Again, early intervention needs to be considered which may mean immediate removal as the mesh may be in the wrong position or irritating a nerve.  We’ve had surgeons call us with those scenarios and we’ve told them you need to go back and take it out. They ask “Really, take it out?”  Yes, take it right out now.  They’ve done so and the patient is 100 percent fine.

Unfortunately, if the sling or mesh is removed that soon after surgery, the patient isn’t treated for her incontinence that she had surgery for in the first place. She can always come back at a later date with a different kind of procedure and at least she’s not stuck with chronic lifelong pain. If it wasn’t addressed as early as it was, a chronic pain scenario could have been set up. So I, 100 percent agree with John that if these things occur, i.e. early complications of severe pain, there are conservative measures that can be taken but if they don’t work rather quickly some other sort of intervention needs to be considered and typically that’s a mesh revision or removal even at an early postoperative time frame.”  

Miklos & Moore, mesh removal and measured, The Doctors

Miklos & Moore, mesh removal and measured, The Doctors

 

Q:  How has your practice changed from mesh implants to mesh removals in terms of trends you’ve noticed? What percentage of your practice is now directed to mesh removals?  

Miklos – “Since 2010 we have removed over 500 pieces of mesh.  Though we have been removing mesh since 1995, including sacrocolpopexy and sling mesh, it was a much less robust number.  The reason for the increased mesh revision surgeries, I believe, are obvious:  1) Dr. Moore and I and doctors who remove mesh have a learning curve – over time we have learned that mesh can cause complications other than mesh extrusion through the vaginal epithelium.  Recently, in a deposition, an attorney asked me, ‘Dr. Miklos in 2004 (during another deposition) you said you never had a patient with a sling with pelvic pain?’ Back then I don’t remember anybody presenting with such an issue. But as you go through medicine you learn from listening to your patients. I have learned if a patient says she has pain, it actually could be the sling. We never knew this before. Most mesh implanting surgeons do not realize that people implanted with mesh can have pain from implantation surgery. It’s not common conventional wisdom among implanting mesh surgeons either. So we had to learn on our own and now when a patient says she has pain we are more attuned to it.

“Now at that point in our careers we do a site specific exam that identifies where the pain is coming from (i.e. the mesh), hopefully, so yes, we have become more attuned to it. One of the reasons we remove more mesh now, which I would say constitutes 15 percent of our practice, is because patients who have had mesh implants are complaining of chronic pain after implantation.  Whether the pain is due to the mesh or the surgeon putting it in, about ten to fifteen percent of patients who receive mesh say the mesh causes pain.   Usually if a patient comes to see us and they complain of pain after mesh implantation, we can identify the mesh as the point of origin of pain in approximately 85-90% of these patients.  One problem is if we can’t elicit the pain, we can’t do a surgical procedure to remove the mesh because we’re not sure it’s the mesh causing the pain and also we’re not sure performing a surgery for mesh removal is going to help them.”

In the OR, Source: The Doctors

In the OR, Source: The Doctors

Moore – “Now we have removed mesh for other reasons. It may not be just pain. It may be an autoimmune response and the patient is 100 percent convinced that her health may be compromised, and even though there is scant medical evidence that may or may not be occurring, we are open to that interpretation and it’s her body. If she wants it out, or her physician has recommended it, then we definitely will consider that and make a plan with the patient.

“I think definitely the mesh removal has slowed down a little bit but this may have been driven by lawyers telling women to hold off on getting surgery until more court cases are heard. I’m not sure this is true but if so, I don’t understand the strategy behind that. I think there are thousands of women who still need help out there.

“I would agree our current practice is 15-20% mesh removal with women coming forward with problems. We still believe in the use of mesh in certain situations. We agree with the American Urogynecologic position statement that in certain situations mesh is certainly indicated. Mesh slings are still indicated for incontinence and sacrocolpopexy mesh as well.  Our mesh implantation has also decreased substantially because women are coming in more educated and we give them options. We tell them the benefits and risks of every procedure and they ultimately make an informed decision of what exact procedure they will have.

“Sometimes a patient doesn’t want mesh even though we believe she may need it, for example, if she has a stage 4 prolapse where her uterus is hanging inside out by 10 cm. I truly believe her ligaments and her own tissue will not hold; that surgery will fail, and this is supported by medical literature. So we have to tell her what we believe will be the most effective procedure, however, we also inform her of the risks that we know of all approaches. Working with the patient in that way  many women are electing not to have mesh, and they need to know there are alternatives to using mesh and we certainly do a great deal of those surgeries, including laparoscopic and other minimally invasive approaches that don’t use mesh.”

dr miklos fromshow

Q:  You are still using polypropylene (PP) mesh to treat women with extreme prolapse and multiple situations and it’s not working. What percentage still require a PP mesh implant? 

Miklos – “You know, require versus not require really depends on the diagnosis. If you have a mild uterine prolapse, if your uterus isn’t coming half way down the vagina, a lot of times we will use the patient’s own uterine ligaments (i.e. 4-5 sutures using her uterosacral ligaments without mesh).  If the uterus descends beyond that, a more devastating or larger uterine prolapse, the less likely 4-6 sutures without any distribution of surface area (that’s what mesh really does, it distributes surface area), the less successful it will be.  Occasionally patients will ask about pigskin. We will use pigskin but we will ask you (the patient) up front, do you know the literature on the use of pig skin 3 years, 5 years, 7 years out? Nobody does – as there are not good studies on longevity cure rates of vaginal vault prolapse and the use of cadaveric and animal grafts.  Sure there are a few studies that say a year out the prolapse cure rate is 80, 82, and 85 percent successful. But there are a lot a studies on sacrocolpopexy mesh that says a year to five years out it’s between 95-99 percent successful. So are you robbing Peter to pay Paul?  As we can use pigskin at the patients request but the patient is not really sure what the long term success rates are going to be nor do we know the long-term complications like graft abscess, infections, autoimmune disease and graft rejection.  What we do in our practice is to let the patient make the decision. If they don’t want it (i.e. mesh) we don’t put it in, but you have to be aware of the success rates and lack of literature of the other types of graphs (i.e. non mesh).”

Sacrocolpopexy

Sacrocolpopexy, Source: IUGA

Moore – “Since we’ve been educated and now been exposed to seeing patients from all over the U.S. present to us with various mesh complications, (we were not aware of the numbers of women that really have been suffering in silence as they went to their physicians and were just told nothing was wrong and to just live with it), we have become much more conservative and much more open to offering patients options both for incontinence and prolapse. We’ve done more laparoscopic Burch Procedures (non-mesh traditional surgery for SUI) in the last two-three years than in the last eight years combined. One of the big problems now is that it’s gotten to the point that nobody knows how to do a laparoscopic Burch, sometimes even open, because we’ve lost a generation, 15 years of young, educated surgeons who do not know how to do a Burch Procedure. This is because they are not taught this procedure anymore in training, nor have they been taught many of the traditional surgeries to treat prolapse without mesh.  The last generation of residents have been primarily taught mesh slings and even mesh kits to treat prolapse which is a major issue.”

Burch Procedure, Miklos & Moore

Laparoscopic Burch Procedure, Miklos & Moore

Moore“Currently about 50% of patients are opting for a laparoscopic Burch and 50% for mesh tape slings. These numbers are significantly different than 2-3 years ago when it was about 95% mesh tape slings in our practice and most other practices as well. Pubovaginal slings, i.e. slings using cadaveric tissue or dermal grafts or even harvesting the patient’s own fascia to make the sling, are making a slight comeback as well, however one must remember that traditional pubovaginal slings are a complex, invasive operation that still requires needle passage, harvesting a graft in many situations, graft rejections, urinary obstruction, and attachment to the pubic bone by bone anchors by many surgeons as well. We have seen many complications even from traditional pubovaginal slings that don’t use mesh as the graft, so I don’t believe that to go backwards to these very invasive procedures is the best choice for women. We believe that in straight forward female SUI, most women can benefit from a Laparoscopic Burch procedure, which can be completed in an outpatient setting, with excellent cure rates and when done by experienced laparoscopic surgeons is a very safe operation.”

“Yes, there are still mesh kits available for prolapse. One has to remember that both the AUGS and SUFU consider the mesh tape slings still to be a gold standard for SUI and that they also feel that in certain situations vaginal mesh use for prolapse is still indicated. The mesh kits that are available on the market today are considered second generation mesh kits, i.e. the mesh is softer and lighter and there are no external needle passes or trocar passes with mesh arms going through and through the levator muscles. We now know the mesh arms created many of the problems that women suffered from.  These second generation kits are considered to be much safer than the first and with less risks of complications, however even with these improvements the overall use of vaginal mesh kits is significantly down, i.e. a huge amount, throughout the U.S. and the world, which we certainly agree with. We feel they should only be used in very limited situations by extremely experienced surgeons.”

 

Prolene mesh

Prolene mesh

Q: Is TVT the gold standard? 

Miklos – “I think there are two gold standards – the TVT sling, i.e. retropubic mesh sling that comes out in the lower abdominal wall or the pubic region, and the Burch procedure which is strictly performed using sutures. Those I believe are the gold standard.  The TVT sling is often touted as having cure rates of 90 percent at 1 year, 85 percent at 5 years, and 80 percent at year ten.  The Burch has similar cure rates of 90 percent at 1 year, 85 percent at 5 years and 70 to 80 percent cure at year ten.  The problem is very few people feel comfortable doing Burch procedures, either through large abdominal incision or laparoscopically.  As well, the Burch is a much more invasive and potentially dangerous surgery.  The Burch will probably result in greater postoperative pain, longer hospital stays, greater number of bladder neck obstructions with the patient having greater difficulty urinating postoperatively.   There will also be a greater number of intraoperative complications including: obturator nerve injury, intraoperative blood transfusions, bowel, bladder and ureter injuries. So statistically the cure rates are about the same but the patient is giving up a less painful and less invasive operations (i.e. TVT mesh sling) for a more invasive and painful operation with potentially greater and more devastating complications by having a Burch.   Again one can consider pigskin or cadaveric slings however we have revised number of these types of slings too due to severe pain, incomplete bladder emptying and painful intercourse.  There is just not enough research done on these types of procedure either.”

Moore – “I would agree with that. Certainly there is so much data on the TVT, those are the two procedures with the most data, the most years of experience and research and the Burch and retropubic sling are typically the gold standard.”

Dr. Moore, The Doctors

Dr. Moore, The Doctors

Miklos – “I have been performing laparoscopic Burch procedures since 1993 and Rob’s been doing them since ‘97 or ‘98. So people will say ‘See there’s an alternative; do a laparoscopic burch or do an open burch’.  Yes, we agree there are alternatives, however, as stated above the intraoperative and postoperative complications can be worse than with the mesh sling procedures. The Burch is not synonymous with having no problems. People think just because it’s not mesh, there are no complications associated with it. It’s just not that simple. I wish it were.  And please note that it’s easier to teach most doctors to do a sling then a Burch. The Burch procedure is a much more complicated and potentially devastating procedure if not performed correctly.  Now you start opening the doors and everyone starts doing laparoscopic Burches, which I don’t think they will because they don’t know how to do them, you are going to have major problems on your hand. I wish it was simpler than this, but it’s not.”

 

The Doctors

The Doctors

Q: We still have no idea which women will be high reactors and how many are not, nobody has identified that factor and there seems to be no way to review that in advance of mesh surgery. Does that concern you? Should we have that answer before we proceed and call this the ‘gold standard’?

Miklos – “I think the problem is you won’t be able to determine, who will react and who will not react because this isn’t always about reactivity like an immune response, this is also about aggressive scar tissue which I believe is the potentially the number one cause of the pain and not an immune response.  How do we fix the problem?  The option is to totally do away with the TVT, and it is certainly an option. Or fix one of the biggest problems which is a surgeon’s lack of knowledge or education.  You must understand it is when a patient has a problem most doctors are ignoring it, pigeonholing it because they don’t understand it and they don’t want to admit the mesh can cause problems.  Over 90 percent of our patients who see us for mesh complications have been told there is nothing wrong with them. Over 70 percent have seen more than one doctor prior to seeing Dr. Moore and myself.”

“So of course we don’t want to have patients with complications but the next step is if you are going to use it maybe the companies have a responsibility to teach these doctors about the risk of the procedure including the long-term risk and including educating the doctors on how to diagnose and take care of the risk. Also, if you as a surgeon don’t know what you are doing surgically to help the patient is remove the mesh, then refer the patient  it to somebody who knows what they are doing so they can address the risk.  The surgeons shouldn’t just tell a patient, it’s in your head, there’s nothing wrong with you. You don’t know what you’re talking about.”  The surgeons implanting the mesh should be taught the potential complications, how to potentially diagnose the complications and either treat the complications by removing the mesh or refer her to someone who has the knowledge, education, experience and expertise to help the suffering individual.”

 

prolift box 200Q: But once that Prolift is in, for example, it’s not coming out anytime soon at least those arms aren’t coming out, so then we have an irreversible problem. 

Miklos – “But that’s the difference between the Prolift and the TVT. The TVT can be completely removed. You are right, the Prolift and the arms, they’re not getting removed.  You and others, as well as myself, may not agree with placement of mesh kits with arms, and this awareness has pushed our current situation to the point that basically there are very few doing mesh procedures especially transvaginal mesh kits with arms.  Previously at my hospital in Atlanta GA, surgeons were putting transvaginal mesh kits in routinely (3-4 times per week) and many of the surgeons doing the placement were not the most talented or the best trained pelvic floor surgeons.  Now most of these surgeons have stopped doing TVM (transvaginal mesh) at least in our hospital.  I rarely see transvaginal mesh kits being utilized.  They were doing it every week, now it is once every 6- 8 months.”

Moore “But now we have a huge amount of women who aren’t getting treatment so we’ve swung the pendulum the other way with that. Certainly there is balance and we have to get the word out there are other options beside mesh if they don’t wish to have that.”

Miklos “We recently heard that most doctors are treating prolapse by doing nothing. They give them a pessary and tell them nothing can be done. Now we are getting a situation where doctors are not referring them out. My opinion is that’s a disservice to the patient.”

In the OR

In the OR

Moore – “We need more information, we need more data and more studies done. One of the problems with medicine is it’s not an exact science. There is no one procedure that may not have risk, whether it’s an implant or not an implant. John and I have treated patients with traditional surgeries who have had lifelong issues secondary to pain, nerve damage, bladder damage, fistulas, and vaginal pain. Not one piece of mesh was used and not one implant was used. So unfortunately, nothing is risk-free. I agree with you we need to minimize our risks as much as we can and find out as much information about everything and hopefully that’s the next step. Should everything be removed from the market until we get that? I don’t have the answer. I think, for now, you give the patient as much information as we can and help them make an educated choice.”

 

Q: A woman says she recently had her medical records reviewed by your office but she cannot afford your cost.  Miklos and Moore do not have a contract with her insurance. She wants me to ask why you’re not in contract with Blue Cross Blue Shield, for example, otherwise it is too costly a surgery for her.

Miklos – “One of the problems is the insurance companies. I have said this to the attorneys, you know; who should be held accountable for this – the insurance companies. For the patients who now have a complication, it was the insurance company who told this patient to go to a certain doctor who was on a list. Now they have a complication. So the insurance companies now should be held accountable for the removal of the surgery. That being said, insurance companies want to pay $600 to $800 to remove a piece of mesh. There are very few skilled surgeons who can remove mesh and the risk of that surgery far outweighs the reimbursement, and that’s the scary part.”

“There are surgeons who will cut the mesh and not remove the mesh.  This is not how to treat mesh pain. Look at the patient who I just took into the operating room yesterday who had nine surgeries at one major university. She was told the mesh could NOT be removed.  We took her to surgery and removed the vaginal portion of the TOT type sling, the body (not the arms) of the both the anterior and posterior TVM mesh kit. We took her back to surgery yesterday to perform a Burch for her urine leakage and I found another piece of mesh which was the arm of her anterior vaginal wall mesh kit and I removed what I could and completed her Burch for incontinence.   She suffered from 8 surgeries and they didn’t remove but a mere 1 cm of mesh in all eight surgeries.  So the problem is most of the doctors, even at this major university she came from, are just cutting the mesh, cutting the arm and you need to remove it! It’s not a risk-free operation. And from our point of view, we haven’t participated with insurance companies for 15 years because we don’t believe the reimbursement is appropriate for such a skilled surgical technique. We wish we could help everybody but, on the other side of the coin, there is a lot of risk involved in these surgeries and the fact that if you’re only getting $600 to $800, it’s not economically feasible as a business. For Dr. Moore and I to be in an operating room for 2-3 hours removing mesh, incurring the risk of medical legal liability for $600, not only doesn’t make sense, it doesn’t even begin to cover our office overhead (i.e. expenses), which we have calculated to cost between $5,000 to $6,000 per business day (without compensation to the doctors). It is really simple arithmetic – if we both did four cases a day at $700 and our total reimbursement for the day would be $5,600 for both of us in the operating room, it doesn’t even cover the expenses of running our office for the day. A root canal costs $1,200 and this is, in my opinion, just as important as a dental procedure.”

steth 185

Moore – “It’s crazy what the insurance companies want to pay, compared to what they are making and what they are charging patients for their policies.  I mean $600 for a very advanced technical surgery with a lot of risk and a lot of time. That’s the problem. We are always willing to look at an individual case to be able to help a patient. They may be able to go to one office versus another, i.e. our office in Los Angeles versus Atlanta and in different states their coverage may be better in one versus the other. We want to help every woman we possibly can, that is our overall goal, not just making money. However, we have to be able to run a business in a way that can keep our doors open to be able to continue helping as many women as possible. The cost of business, overhead, staff, medical malpractice insurance, it’s not a doable business model. We want patients to understand this and understand that we don’t mean that we’re “not making enough” just for the sake of the dollar.  We do review every case on an individual basis and we do our best to be able to help each and every woman the best we can and in many cases we fight the insurance company to get that patient better coverage as there is no one else that is as qualified in their network to be able to do their surgery We have been very successful with this type of strategy and will continue to try to do this for patients. Please Call Mindy (our office manager) directly and we can look at everybody’s individual case and see what we can do, as again, our overall goal is to help as many women as we can take care of any complication they may be having because we know they have been suffering and have not been able to find the help they need.”

Q: The last question is about your article, In Timing of Mesh-Related Complications. Mesh Removal following sling/mesh placement: A Multicenter Study: [Miklos, Moore, International Urogynecology Associates of Atlanta along with Emory University and the Cleveland Clinic].  This was a retrospective look at complication rates from three centers in the U.S. that deal with mesh complications including from 2011 to 2013, all patients who underwent surgical removal of slings, TVM and sacrocolpopexy following complications. Of 445 patients 40 percent had TVM for POP, 83.8 percent had a sling and 8.5 percent had sacrocolpopexy.

 

Not so useful assistants

Not so useful assistants

Q: You concluded the average timing of a mesh complication was 3.67 years approximately ….and there wasn’t much difference whether it was a POP or a sling. Did I get that right?

Miklos – “Our time to diagnosis was the longer than any other scientific paper reported time to diagnosis to this point.  The reason is the patients are being pigeonholed, avoided, told they are crazy, there is no problem. So we don’t really know if it’s the mesh having delayed problems and manifesting much later after implantation or if it’s the doctors who keep telling the patient there is nothing wrong with them and they are just being diagnosed so much later than they should be. Only until recently through websites like yours, patients have become aware that they might have pain due to mesh implantation and they might have developed pain with intercourse five years later due to a previous mesh implantation.  Patients are saying only now, maybe I had my surgery in 2010, I didn’t have a problem before, maybe I have a problem now and this is a delayed manifestation of the mesh complication. So there’s been a delay in diagnosis.”

“Basically you ask any surgeon before 2010, what’s the number one post-surgical complication with mesh and they would tell you, mesh erosion, but mesh erosion or extrusion in the vaginal skin is an objective finding.  A lot of doctors hear complaints of pain and discomfort and they look in the vagina and say, ‘There’s no mesh coming through your skin, you’re fine.’ They don’t understand it can be underneath the skin and still cause pain. Even I’m probably guilty of this scenario and overtime I have learned the clinical manifestation of mesh complications.   We never were taught this in training because there has never been a time is surgical history where this much mesh has been used to fix vaginal vault prolapse and urinary incontinence.  It has taken surgeons years to learn and understand mesh underneath the skin can create pain. Mesh extrusion can usually be readily treated, but when it has accompanying severe pain, not isolated to the point of mesh extrusion, it can be a real problem. So I think it’s a delayed diagnosis by the physician, a lack of our knowledge, meaning not only myself, but most doctors didn’t know you could have these other problems until you’ve been exposed to them. Only then do you start looking for them.”

Obturator Anatomy

Obturator Anatomy

Q: And the TOT incident of pain was five time higher than retropubic group. What does this say about TOT mesh? Should it be on the market?

Moore – “It’s the same exact mesh. The TOT and retropublic is the same exact mesh. Both John and I believe currently that TOT slings should not be done even though it’s one of the number one procedures done around the world for incontinence in women.  The risks of groin pain, leg pain, and nerve injury may be small but we think it’s too high and there are other alternatives for surgeons. We don’t believe that mesh should be brought through the groin, or through the buttock cheeks, because if you have a problem with that it’s very difficult to treat and if you have problems, mesh arms in these areas can be impossible to remove and impossible to treat. So for those reasons, again it’s the same material. But to pull it through the groin and through the levator and obturator muscles and in certain situations the adductor muscles, we don’t think that’s a procedure that should be completed.”

Miklos – “The problem is the method of doing it. In terms of mesh contracture, it’s not occurring in the body of the mesh like the TVT, but it’s where the mesh inserts. If you think about the TOT placement from the vagina to the groin there are multiple layers of tissue it goes through including the urogenital membrane, endopelvic fascia, vaginal skin, obturator internus muscle, obturator membrane, obturator external muscle, scarpus fascia, subcutaneous fat and skin. Each layer of tissue has its own ability to create scar and fibrosis. In some women that’s 2 to 3 inches thick.  Each layer can actually create scar.”

“Now with a TVT sling there is a scar underneath the urethra, but the real scar occurs between the vaginal ceiling and the internal superior vaginal wall. There is really nothing in that space between these two layers of tissue but a potential air space. Now it does scar to the wall but it’s the tissue between the wall and the vagina that tightens. So there is less ability to have one continuous scar plate formation. The more multiple layers of muscle and tissues these arms go through in a transobturator implant (like the Prolift, Avaulta, TVT-O and TOT type slings), and considering muscles have more nerves than fat, the greater the potential for pain. If it goes through muscle you have a greater risk of contracture, scar plate formation, and the more contracture there is or tightening of the muscles around the mesh, then you notice secondary nerve entrapment.”

“When you think about sacrocolpopexy, it doesn’t go through any muscles.  Don’t get me wrong it can contract and cause pain too but not to the degree you are seeing in these meshes with arms.  These are big arms going through the pelvic floor, levator ani and obturator internus and obturator externus muscles.”

“I personally believe, at this point in my career, that the transobturator (TOT) tape sling should not be on the market because it transverses too many layers of tissue which, on occasion, can cause nerve entrapment and it’s extremely difficult to remove these slings from the groin. Whereas a single incision sling, you can usually remove 95-99 percent of the mesh. But the TOT type slings, I personally believe even though the risk of permanent groin pain is low, there are other alternatives where you aren’t going to get permanent groin pain.  So I personally think it should be removed from the market.”  #

88 Comments

  1. Miss T says:

    Thank you, Drs Miklos and Moore. . .very enlightening. And as always, thank you Jane.

  2. Jane Akre, Dr. Miklos and Dr. Moore: thank you for your thoughtful conversation about pelvic surgical mesh. It is the exchange of information over time that prompted necessary changes in surgical mesh surgery in your practice. Many implanting surgeons are not open to similar feedback. So many harmed women had their patient outcomes (PREVENTABLE, severe, irreversible and permanent harm) suppressed by companies that profit from sales of these medical devices. Validation of pain and removal of the offending implant is the least that the medical community can provide. Please continue to learn and communicate beyond your medical colleagues. Patients can handle complex decisions when they are offered adequate and reliable information.

    I did not hear the doctors express concern that the material – polypropylene-used in surgical meshes is a petrochemical made by Chevron (in the case of Boston Scientific) and it has a MSDS (material safety data sheet) warning that it should not be implanted in a human body.

  3. Msm says:

    Wonderful interview. I have one question.

    “But that’s the difference between the Prolift and the TVT. The TVT can be completely removed.”

    We

    • Msm says:

      We are being told that the TVT can’t be totally removed except by a handful of surgeons and even then, it is a very invasive procedure. Some surgeons are calling removal of a couple of inches a ” complete removal” . What’s the real truth?

      • Jane Akre says:

        Not being a doctor, what I have seen is that TVT removal starts at the point of implantation, that is the vagina… It is cut in the middle then the surgeon works up midway on each end. The removal continues from the exit point of the mesh inward until removal effort- cutting cauterizing and slightly pulling – ,meets in the middle and eventually the mesh comes out. It’s a long and arduous process. The same thing cannot be said for the TVT-O because it is going through eight layers of muscle, ligaments and tissue….The delicate groin area where every movement is magnified….If you have scar plate formation on multiple layers, which you can, and muscle incites nerves and nerves are encapsulated- that’s where you’ve seen the defective design conclusion by juries. Very difficult to go through those layers without doing more harm is what I’ve seen/heard as a non-surgeon.

  4. Ana says:

    I had two tvt implanted one in 2006 and one 2011, and just like Dr. Mikos, and Dr Moore said, after seing a Urogonecologist, and explaining the severe pain in my left side with the terrible burning feeling in my pelvis area he doesn’t even mention the possibility that the problem could be the meshes. He did say that I have a vaginal bulge. I also have gotten hip injections for my left hip. But now I have the orthopedic doctor telling me to see my GYN, and the Urogynecologist telling me to see the orthopedic doctor. How I wish I could find a doctor that is educated about the pains that are related to mesh in New Jersey. Could you tell me if having two meshes makes for such a long period of time makes it almost imposible to be removed.

    • deb says:

      I had a TOT sling for SUI, and also had a lot of problems with hip/groin/leg pain – making walking almost impossible. II went to all kinds of docs too – had cortisone injection in hip to no avail, etc. I was lucky to get to Dr. Raz for full mesh removal. Pathology report shows mesh was causing FBR, and mesh had eroded through obturator and abductor muscles and attached to my pelvic bone. I feel like Dr. Raz saved my life by being able to remove it. Unfortunately, I also wound up needing hip surgery too, because my hip joint deteriorated over the course of a few months while dealing with everything else. I’m finally doing better now. Not perfect. Still working on things – but, overall – much better. No more cane or crutch, or pain meds is a huge plus. My story is on my blog if interested – on the Deb Who page, and then some – http://www.meshmenot.wordpress.com

  5. Emmie says:

    My question is why Medicare is not accepted at all by Dr. Miklos and Dr. Moore?

    I lost my job and my good insurance due to the chronic pain of my mesh implants.

    My husband’s BCBS is my secondary insurance and only accepted as out of network for surgery with Miklos and Moore. My out of pocket is $7200 for surgery. This equals almost 4 months of my SSD payments.

    • kitty says:

      I was planning on calling the. Today. I would guess they are not Medicare certified or do not take Medicare patients that’s why Medicare wouldn’t Pay

  6. Tammy says:

    Dr Veronikis in St. Louis Mo accepts a lot of insurances. He removed all of my mesh last September. He is very good at what he does.

    • Jan says:

      Tammy, I agree with you. I flew from Atlanta to St. Louis to have Dr. Veronikis remove my mesh. He was able to get all but a very small piece out. I’m still recovering since surgery was just last week and not sure yet what nerve damage I may have. Yes, he does take Medicare. I am very thrilled that I was able to go to him.

      • Emmie says:

        Jan….how are you? Hope you are feeling better and have a speedy recovery.

        How long did you need to be in St. Louis after surgery?

        • Jan says:

          Emmie, I’m doing well and recovering pretty much on schedule. I had surgery on Tuesday morning and stayed at the Comfort Inn Westport until the following Monday morning. I flew back to Atlanta on that Monday, but was thinking I probably could have stayed until Wednesday morn to be a bit more comfortable with the flight. I found the hotel to be very affordable and with their shuttle service, I was able to get around as necessary. Please contact me if you want more info. I know I’ll be able to give more encouragement when I’m totally off the pain meds,

  7. Toni says:

    I live in Kansas and I have an apt with Veronikis next month . I so hope he can help me. So sick of the daily pain. I have a great job a nice home and I am a single mom of 2 sons Ive raised for 13 yrs on my own. I have lost so much of my health and my life to this crap. Barely holding on to my job and my home of 20 yrs. I can’t keep a relationship. I am attractive and just turned 50 but not many men want to have a relationship with a woman who is always hurting because why would they want to get envolved with that. My question is if every woman on this site got together all across the country in somewhat close prox on the same day and formed protests to bring attn. to this travesty. Maybe we would get the attn. we need to force these companies to admit and right the wrongs they have done to us. Face it ladies we are their guinea pigs and lab rats. You don’t here of famous or wealthy women with our problems. Because they don’t implant those type women with this crap. We are middle class to maybe poor. But all of us are getting screwed by these companies for their profit line. We need to stand together all across the U.S and make it be known on mainstream TV not this behind the scences stuff. I am mad as hell at the wrong that has been done to me and so many of my sisters across the nation. Lets gather in strength and blow this story to the main steam. National anti mesh Day scream till they have to listen.

  8. kitty says:

    Does anyone know if Dr Raz has an assistant or protégé to assist him in mesh removal? He is 75 yrs old

    • Teresa says:

      Kitty,

      Dr. Raz is 75 years old, but if you met him you would never know it.. he can run circles around those half his age.

      I had ask that same question and was told he does his own surgeries, not assistants or residence.. I asked that question since UCLA is a teaching hospital.

    • Bejah says:

      Hi Kitty, I think he does have a young female physician he works with and others will probably tell you her name. I would not discount a surgeon due to his age, especially this one given the small field of experts available to us. If his hands were shaking he would have retired. I would strongly advise that you do not see a surgeon there at UCLA in Urology whose name is Dr. Kim. I think she is Korean, also younger. She implanted me with the JNJ/Ethicon petroleum mesh with no explanation, no brochure, no warnings, nothing. After the surgery I drove home (120+ miles) when released from hospital (Without adequate pain medication) after several days during which I was very constipated. Even in the hospital my pain was not adequatley addressed and Dr. Kim did not repy to any of the email I sent to her personal UC email address. I was supposed to get an RX for narcotic pain medication at discharge and that is what the discharge orders said but I was given an RX for a high dose of ACET not a narcotic pain med at all…but an OTC medication. I was furious. I can not discuss the rest of my experience at UCLA but I will NEVER go back there. If you see Dr. Raz evidently he is very different than Ms. Kim or the young male doctor who assisted her in my surgery. He is an arrogant monster. Be careful about UCLA. They did this to me. Because of the nature of my case I can not have removal surgery because several experts have stated the probability that I would die in surgery is too high. We have family friends and he is a retired orthapedic surgeon and was highly regarded in Beverly Hills where he practiced for decades. He stopped doing surgery when he found that he had a slight tremor in his hands just from age so he turned to teaching. I am sure Dr. Raz would do the same. Evidently it is advised that you have the extraction done as soon as possible so that you are not facing increasing scar tissue development, etc. Best wishes Kitty.

  9. kitty says:

    MUST READ excellent report. THANK YOU

  10. Laura Begley says:

    OK I disagree with the Retropubic tvt being the gold standard…my surgery was done on 2004 and my pain started a few days later…I was rushed to the emergency room …I had 1500 CCS on my bladder that they drained…I ended up with a distended bladder from it ….the dr acted like my pain was nothing and it didn’t concern him…..now almost 11 years later I have abcesses on my inner thighs and the backs of my legs under my butt and I have pain ohh some unbearable pain sometimes where I can’t hardly walk …..so don’t even say this crap is the gold standard!!!

  11. Terri says:

    Thank you for the statement below, it enlightened me as to at least one of the issues I continue to deal with.

    Now with a TVT sling there is a scar underneath the urethra, but the real scar occurs between the vaginal ceiling and the internal superior vaginal wall.

    Since my TVT became infected and formed an abscess that ruptured though the vaginal wall, I have a MASS of scar tissue behind the urethra, I can’t empty my bladder and continue to have UTI”s on average every month.. even after full removal.

    • Laura Begley says:

      Try azo cranberry pills they have worked for me when I have flare ups …its an option instead of so many antibiotics

      • Bejah says:

        Laura, Cranberry is great. I also buy fresh cranberry and wash them very well as they are one of the top ten fruits hit with high degree of pesticides. I make my own and use it on toast rather than jam, maybe with a little cream cheese. This is a take off from the great appetizer item (A block of cream cheese with a tin of cranberry sauce poured over it), served with crackers of some sort and a nice red wine.

        Bejah

  12. confused and afraid says:

    Thank you so much Jane for the interview with Miklos and Moore, and thank you M&M for taking the time to answer some of the questions many of us woman have. When I first noticed the (lead article), was the interview with M&M, my thoughts were “Jane is on top of it”! As I read, and then seen that you had asked M&M the question I have been very concerned about. I was very touched. I truly know that you really care for all of us that are mesh injured. This interview has inlightend me, and helped in answering alot of questions. I am not sure what will happen now. I understand their (M&M’s) reasoning, behind the insurance issues, but in reality I cannot afford their cost. Atlanta is closer to me, but I still would have expences for staying there for at least a week which would be costly as well. I do hope to have this mesh removed soon, but I need to get all this figured out. I want to do some research, and see what will be a better outcome for me. I feel like I was rushed into having this implant done by Doctors that did not inform me of any risk, and I certaintly feel like it was not needed for SUI. Again, thank you Jane. You have been a blessing to us all, who are mesh injured. I have learned so much by reading your articles, and appreciate this website more than you will ever know.

  13. Me says:

    For those who are saying they can’t afford the surgery with “M&M” I called thier office and they set it up with someone that helps pay for the surgery and then after your case is over they take it from your settlement. I didn’t have to put a penny out of my pocket. Dr. Miklos did my surgery. I have to say I am grateful to have that crap out, but am having pain issues in my leg and Vag. Area and have since shortly after my surgery, but now I have no way to deal with it and once the surgery and recheck were done they blew off any complaint afterwards. Dr. Miklos is obviously very good and I am grateful to have it gone, but I have to say my female parts are in HORRIBLE shape, the damage done by the removal process is extensive. But that’s where they left me….no help to fix the damage or treat the new pain and of coarse my incontinence is three times worse. I don’t blame them for anything but want anyone having it done be aware of the aftermath…I do feel they need to continue to help treat me but they have literally just ignored my complaints. So befor starting your journey please make sure he commits to the entire process until you are as close to normal as possible. Also he is not very personable, but very thorough and polite. Just very busy and not much time to give each patient, he spoke to me for a whoe 40 seconds after the surgery and I never saw him again, all follow up is with a different Dr. And she was wonderful. They don’t preserve the mesh either. I hope that anyone else going to them has a better experience than i did. His office people are so wonderful and understanding you almost forget your angry at him for ignoring your issues after removal….almost. Good luck and if anyone needs the name of the patient advocates that arranged my bills to be paid email me rnklein01@frontier.com

    • kitty says:

      It is hard to believe these docs would leave you in such horrible shape. From what I understand they are cosmetic surgeons. That does note fare well for their reputstion.

      • Me says:

        That’s what I thought…but then again, other than the follow up after surgery I have not been able to get them back on the band wagon to help get me back to Georgia so he can see the damage… So in all honesty he didn’t just leave me this way, They are just ignoring my call for help. I think it’s safe to assume I will eventually need several more surgeries but because they are not settling these cases I think the investors for the pt advocate program might be slowing down on helping us women get the work done that is needed. Also I would like to just note my observation….when I first heard Dr. Miklos and Dr. Moore’s opinions….way back when, they seemed to advocate for mesh, and even defend how good it was and blame the issues on the Doctors/surgeons. Now it seems they are teetering on the fence, never really saying they beleive in it being safe or not, I’m not sure what to make of the interview, they kind of skirt around thier opinion on that part. I’m not sure if its the legality of anything they say or not…. All In all they are good and are at least not brushing this under the rug like I read a lot of docs are.

      • Jane Akre says:

        Kitty- They are not cosmetic surgeons…. They are urogynecologists and surgeons. Many ‘vaginal rejuvenation’ surgeries are also medically necessary.. No doctor has a guaranteed 100% result,,, None. I’ve heard of problems even with the esteemed Dr. Raz and Dr. Veronikis. The bottom line is that these are delicate pelvic surgeries and fraught with potential problems…. that is my opinion. Also opinions are changing about mesh and its value overall after seeing so many complications. One would have to believe there are that many bad surgeons out there which is a frightening thought. Also remember- many women do okay with mesh, at least for the while that we know. I have a friend with a mesh sling done many years ago and she has no complaints. It’s maddening to know why there are so many variables out there…..

    • Jan Urban says:

      You should contact your State Senator and Congressmen with the issue of non coverage of mesh removals. Insurance Companies have guidelines and regulations for insurers in each state. Their Staff can help you through the ins and outs of medicare and private insurance. It’s worth a try. Appeal all decisions, no matter who the carrier is. There is coverage for you. They just make it difficult so you give up and their bottom line stays the same. Appeal, Appeal, Appeal……

  14. Mari says:

    I hope everyone, including doctors realize that “porcine” mesh that is referred to as cadaveric and biological mesh is still horrible mesh, which caused me excruciating pain, feeling like cut glass when I tried to have intercourse. it also caused my vagina to shrink so small Dr Raz said it was only 1 finger wide (typically 4) and he had to cut along side my vagina because he couldn’t even get a speculum in. It is supposed to dissolve, but a year after implant, Raz removed what was left and described it as “rough”. it seriously felt like metallic edges of screen mesh in me. Don’t let any doctor talk you into using it! my implanting surgeon referred to it as “cadaver skin~ soft, like moleskin”. Not hardly!

  15. msm says:

    In my opinion, the term “gold standard” is misleading and skews decision-making. When doctors are taught that something is the “gold standard”, it encourages a “cookie-cutter” approach to treatment. Rather than looking at all options objectively and considering only what is best for each individual patient, the “gold standard” is assumed to be the best treatment option for the “average” patient. When it doesn’t work out, the patient is considered an anomaly and (as we’ve all heard) there is an “acceptable” percentage of failures and patients should assume this risk.

    This decision-making process is especially dangerous considering that the Burch procedure is only mentioned and not taught in many medical schools. If it is taught, it is not learned. Few new surgeons have seen the procedure performed on a live patient and those few have no knowledge of the outcome beyond the O.R. The Burch procedure is considered “old school” and mesh is the only “gold standard”. Let’s face it. What surgeon wants to explain a decision to use anything other than the “gold standard” to colleagues?

    Because the training for implantation of mesh mid-urethral slings (often referred to as tension-free vaginal tape “TVT”) is mostly provided by and lead by representatives of mesh manufacturers, it is no surprise that surgeons are “trained” that it is the gold standard of treatment for stress incontinence. How many surgeons are basing decisions on the testimony of the manufacturers’ representatives and the outcomes of the manufacturers’ “studies”? Do patients realize that their treatment is significantly influenced by the mesh industry? Should they? Absolutely!

    A surgeon should be confident in telling the patient that mesh company “A” has designed this “wonderful” product to benefit women and improve their quality of life. Give credit where credit is due. Right? Also, they should be sure to tell the patient that the manufacturer conducted the studies and that the product is NOT FDA “approved” but “cleared” in order streamline the marketing process. This information should be offered openly by the surgeon and included in the informed consent documents signed by the patient prior to the procedure.

    In my opinion, ALL treatment choices should be considered equally for each and every patient. Failures due to dependence on the notion of a “gold standard” is not acceptable regardless of the percentage of those failures. Failures will occur, but each and every decision must consider each and every treatment option objectively for each and every patient individually taking into consideration their history and lifestyle in addition to symptoms and test results.

    All patients should be able to trust the education, training, and decision-making process of their surgeon.

    **NOTE: This is not a comment nor an attack on the abilities or professional decisions made by Drs. Miklos and Moore. It is a comment on the use of the term “gold standard”. I appreciate the effort and time taken by the doctors and Jane Akre is producing a very informative report.

    • David says:

      Well said! – “The primary purpose of a classification for any disease is to stratify for severity so that reasonable comparisons can be made between various treatment strategies” (Fitzgibbons RF Jr. (2002) Editor’s Comments in Nyhus and Condon’s Hernia 5th edn. Lippincott, Williams & Wilkins, Philadelphia, pg. 79). Therefore, I think, the classification of a disease should take into account the severity of an individual patient’s disease/condition, within “like patient” demographic guidelines, via each patient’s tolerance for risk understanding. What is fundamentally amiss from the current practice of medicine are responsible use patient safety guidelines (RUPSG).

      The surgical mesh industry has already made the premeditative decision that to victimize a percentage of patients in acceptable, upon its targeting as large a patient population as possible with its “gold standard”. With this industry’s full-bore, inappropriate 100% infliction of risk onto every patient slated for its premeditated abuse – every patient MUST BE empowered, via legally informed consent, to make the responsible use consideration for a surgeon: to prevent being unwarrantedly exploited. The industry indoctrinated surgeon regressively trained to indiscriminately inflict his/her self-serving “gold standard” was not competently trained to put their patients’ needs before own. Because that physician’s primitive behavioral norm carries out the standard of care, their (collective) negligence is not then held to a higher standard of human decency.

      • msm says:

        Thanks for point out that there is an extremely important and overlooked issue:

        “…tolerance for risk…”

        Risk may be considered in the deciding on a treatment plan by some surgeons, but not the “tolerance for risk”. There’s a big difference between the two. Can the individual patient cope with or tolerate each risk of the procedure should it occur? Can the patient who only has access to public toilets tolerate self-cath as well as the woman who has unlimited access to a private toilet? ( for illustration only) No one wants this to happen but it is a risk. Has the surgeon considered this AND discussed it with the patient?

        I have heard of this argument in settlement negotiations and in court. The defense tries to say that the reward to the plaintiff for pain and suffering should be lessened based on pre-existing conditions (lower tolerance for risk). In my opinion, the amount awarded to someone who could run marathons before the mesh complications should be the same as for the woman who was wheelchair bound before the surgery. For Pete’s sake! All the second woman had might have been the ability to sit comfortably and the mesh has taken even that away. That’s all she had left and now even that is gone. Compensation for earnings lost should be considered with the past and future ability to earn in mind, but not in considering compensation for pain and suffering.

        • karen says:

          Hi jane again and again I love you . Because I was so in the dark and had no one to help with information about this vaginal mesh problem .

          Msm ,I totally agree with you I had a career full benefits, we were on our way to wonderful vacation and it all stopped . I was a very healthy outgoing woman . No physical limitations could sit without major problems, walked the mall for 8 hour shopping with family nonstop , you know women love to be out and shopping, no fun without the malls , or an outlets let us loose just give us a store ,maybe 30 minutes for lunch or dinner. Getting ready for the evening of dancing with hubby , I danced my whole life, had just lost weight , new grand daughter , husband with 25 great years of marriage . But now this is a nightmare I have been turned into a woman I never knew physically and mentally . I was always happy doing marathons with my aunty a breast cancer survivor , my husband kidney marathons . Can drive for days going everywhere, I was a lets go get it done now person ,if i didn’t try then it wasn’t worth trying , that’s what I was taught my entire life and that what’s I taught my family . My doctor knew what I did for a living a mail carrier, I had at least 20 more years til my retirement. I can’t go back to work , I can’t lift, l can’t walk no one then 5 steps before pain kicks in. Im not a drug user i hate pain pills .I have to ride a scooter to shop. And im not going to lie about this, I’m jealous because I miss my legs moving fast , I just watch now . I miss my strength when my family said I need a little help bring in the groceries mom. So over all this is like I was chosen into this project and now I have to figure out how to fix it . I want my physical and mental life back. It belongs to Me not Johnson and Johnson

          • kitty says:

            Karen. This was so well stated by you

            It represents so many of us. Is there anyway you can get your statement to judge Goodwin?

  16. Ana says:

    In my opininon, I think the medical field has become similar to the corporate field. In a lot of ways, I see their decision based on the quicker the procedure the more patient we could do . Is it always about care, or is it the $ bill?

  17. Toni says:

    Is there ever going to be an end to this madness. Take pain pills to survive the constant pain. The only way to say what it is like in my lifetime would be severe period cramps on a good day. Labor pains on a bad day.What did these corp execs think about knowing the possible outcomes of the products they were unleashing on the public. What has happened to our world that they have no mind to comprehend what they do to the unsuspecting public. We as people expect that what these company’s put out and the Dr’s use are safe effective and that they know what they are doing.So scary that this is not the case. Wow may as well go back to coat hanger abortion days and hope for a good outcome. As these Dr’s have no idea what they are doing just doing what makes money and what the Pharma company’s want . The lab rats are dieing or in pain. But do they care. No we are just women and they have money in the bank, They could care less,

    • Jane Akre says:

      I’m not sure that is a fair characterization of Drs M & M. I watched them in action and they know what they are doing. Perhaps you were speaking generically. Certainly the FDA has a role in making sure there are complete reviews for safety and efficacy rather than the fast-track system we have today which completely puts industry in charge of approving their own products.

      • Kitty says:

        Dr M & M are most likely Docs for the rich and famous. And—-more power to them. This is the USA and we do not have socialized medicine here. If you have the money—then go to the best and pay the price. What insurance pays for a eye lift or face lift? Sometimes insurance/and or medicare will pay for a breast reduction if medically necessary–and then you will have beautiful breasts after its done. When we have the money we will go to M & M.

  18. Lucy Loo says:

    My BS Pinnacle mesh was inserted in Marietta, GA, outside of Atlanta by a regular OBGYN who swore that he never had a patient to have a problem. Right. Within five weeks I was back in the OR because mesh was coming through my incision and now, five surgeries later, I am still suffering. God bless anyone who is stuck in this ongoing nightmare.

  19. Bejah says:

    Dear People, I want to mention another possible symptom post implant, one that I have experienced but I have not noticed anyone bringing up yet but I could have missed it. I think it is worth mentioning so that we can just be extra careful so that it does not happen to all of you. I have been grinding my teeth, not just at night but in the day as well and evidently biting down very hard as well all from the level of stress, anxiety, pain and worry. My teeth are now seriously worn down. I never got cavities at all. Now I have five small cavaties. The worst thing is that one of my top front teeth…a piece broke off and the teeth are fitting together strangley in that area. Thankfully I have very good dental insurance. The cost to fix these problems at a mininum just to address the worst issues is $2,500. My co-pay is about $225.00. But I will also need a custom nightguard, stronger anti-anxiety medication, and probably a bridge so I think the cost will be much higher. This is very depressing. I am thankful that when I talk my teeth do not show much. What next I wonder. Please be very careful with your teeth. Get a nightguard at the drug store and use it (They are about $20). Monitor your teeth and take good care of them, maybe taking extra calcium. If this effects the teeth does it also effect bone I wonder in the same way. Just FYI all.

    Bejah

    • surgeryinmay says:

      bejah,

      i have been dealing with my teeth just breaking off. they are not cavities. they peel,spilt and crack. my teeth were sensitive when i was pregnant, but this is way worse. i know i grind them even during the day because of pain in my body. i just got on the computer today because i had another tooth break off. i read if infection is present not to have your teeth cleaned, i had mine cleaned late january , i was, still am infected. my teeth are horrible.. i never had cavities, i take care of them, but i guess when your body is failing, your teeth do too. sad.

      we should probably all post every one of complications. i have more than just a few… I’ve posted about these sometime back.. My eyelids peel off. yuck. they don’t itch, but they burn. its like they have been burned. i have several toenails that are very thick i mean very and they peel too, they are painful, like they are in the quick. i have severe hives all over my arms, after they heal up they are thick patches of skin. they are painful, it feels like bees stinging. constant. it drives me crazy.

      my private area is terrible . it is like i have been scalded down there from front to back. it is painful too.

      I’m doing the best i can. i don’t have a doctor that believes any of these things are because of mesh.my dentist too. he was my friend.. I’ve been handed ever type of cream, ointment , pill, they make. none of them help. i can’t stand to go to any doctors because it is so upsetting to me. they treat me different, i’ll just stay home and suffer.

      hugs.

      May will be here soon…

      • Bejah says:

        Dear SurgeryinMay

        Sorry to take so long to post this…some days are better than others, what can I say. Thanks for being so honest about your terrible symptoms. I know it will benefit many others. I am going to create a list of symptoms and ask Jane to post it as a permanent page on her site if she can. Others can then add to it or refer to it. No names will be listed in connection with the symptoms. Once we have that data we can manipulate it and create documents that will be very helpful in tracking the impact of this Hellish material. If any of us are adept at data management SW I hope they will step forward to help achieve this.

        Have you consulted any specialists about your symptoms which clearly represent a severe foreign body response? Remember your truth. Do not let doctors or anyone belittle you or your condition. We have all had doctors behave very badly and I know my respect for them has diminished a great deal. By the way I also have the symptoms of vulvadynia and it is horrid. I can’t wear pants…good thing I do not go out much! The Premarin cream helps a little but that does not last more than a few hours.

        You must be getting anxious about your May appointment. I would advise that you stock up on Ensure and start taking it now every day along with a good multi-vitiman to prepare your body for May and after. I would also suggest B Complex and high daily dose of B12 and daily Vit D. Looking forward to hearing from you after. Take care,

        Bejah

    • Jane Akre says:

      Bejah, Just anecdotally, I have heard from many people who have dental problems after their mesh implants when they never had dental problems before…. Good coincidence? I wish some smart researcher would begin to gather the data we already have here (anecdotally) and ask if people want to be involved in research in the area of autoimmune. This is a rich field, unfortunately populated with people who are suffering all sorts of autoimmune issues after their mesh – fibromyalgia, allergies, joint pain, lupus, dental issues – this data could be mined (voluntarily) for research and publishing in an entire new field of exploration. We could coordinate here at Mesh News Desk.

      Here is an excellent article about mesh complications and autoimmune issues. Thank you Noni!!
      http://meshmedicaldevicenewsdesk.com/the-links-between-surgical-mesh-complications-and-the-development-of-autoimmune-diseases

      • Bejah says:

        Thanks Jane. I want to recommend for all of us that we do what I am now doing:

        ACT mouthwash per dentist (Screw Listerine = JNJ)

        Sensodyne toothpaste followed by

        brushing with baing soda and peroxide

        followed by brushing with salt

        then toothpaste.

        Floss and brush twice a day or three times if you can.

        I notice that my mouth is very dry at the corners often now. That may be from some medication, not sure.

        Bejah

  20. justme says:

    Dear Bejah

    Somewhere on this site there is a list that talks about the loss we have due to mesh and teeth is in the top ten. I lost almost all of mine. They became brittle, broke, root canals. skin tags in the mouth, horrific ulcers, ect.

    Again fellow/sister mesh survivor, you are not alone and you bring up a good point about the mouth guard.

    • Bejah says:

      Wow! I guess I should look at the list. Another blow. BTW if you can do it, evidently the dentist can make a custom teeth guard.

      What else, what is next I can not help but wonder.

      My body is falling apart as I speak. I have truly been poisoned. Is this anything like the Nazi death camps I wonder where human beings were experimented on.

      I wonder if Bursitis is on the list. Thanks Justme for telling me.

      Bejah

    • Bejah says:

      Jane, Can you please tell me where the list Justme refers to is on your site? Thanks so much.

      Bejah

      • Bejah says:

        I may know what is next for me. I think I found blood in my stool this morning so making appt with my Gastrointerologist. I just had a colonoscopy a year ago so do not know what this might be. Please tell me this is not on the list of things we should expect as mesh wounded hman beings. Feel like a cascade of symptoms now, as if my body is caving in and drying up and will one day soon will just blow away leaving only the wind.

        Bejah

        • Bejah says:

          Update: Well the blood in my stool was not cancer, it was from hemeroids (sp?) because of hard stool because of another thing we experience as mesh wounded people: Constipation. I never had this before implant in 2010. Now it is a problem and I feel I should try to keep my intestines clear to allow more room for internal organs. The Gastroenterologist I went to (Jane we need a spell check, help!) spent over an hour with me and explained a lot…how pain medication impacts the colon…not good…for example the sigmoid colon I think or was it the small intestine loses its ability to contract to push waste through when you take pain medication…and the more pain medication you take the worse the problem is and there are other problems related to this. He told me that I should not strive for a high level of pain coverage but rather pain medication that leaves me with a pain level of about five…this will vary per person. Then one is in theory in a place where they can use other techniques to lessen pain or the perception of it like activities that release endorphins like swimming, and one should be able to refocus the mind away from the pain…this is possible to a degree. I have done it.

          Also, I have purchased some essential oils from DoTerra for pain. They work. And my pain management doctor has made a cream for me to rub into my right hip to address the bursa pain. He gave me two sample bottles that are very generous and it works. The ingredients are abreviated but one is lidocane. It also works and so there are healthier options. Please be careful about taking pain medications. The body gets so accustomed to them that it will create pain just to be “fed”. This is a dangerous cycle. They also clear through the kidneys and/or liver and is hard on them when used chronically. Think of the paid medication as something in your toolkit. Take care all,

          Bejah

  21. justme says:

    Lucy Loo

    I think I know who that is and he lies to his patients and denies that mesh is a problem.

  22. justme says:

    Bejah says:

    March 29, 2015 at 12:20 am

    Jane, Can you please tell me where the list Justme refers to is on your site? Thanks so much.

    __________________________________________________

    Dear Bejah

    Here is another good link that mentions the teeth. You have to go towards the bottom for the banner posted that list side effects and damages to our bodies.

    http://meshmedicaldevicenewsdesk.com/top-10-myths-woman-are-told-today-about-pelvic-mesh

    THIS needs to be reported and posted under every new article each week, as I was astounded the first time I read it, and printed it out and gave to family members and doctors and others we will talk about at a later date. It will make all mesh victims cry. Thank you Jane for posting that whole article. It really, really is on target.

  23. Bejah says:

    I just can not find the list of problems we have post implant so I will look again where justme said to look. If I can not find it I think I will create one and then ask Jane if we can post it and ask others to add to it. It would be nice if it could be a permanent fixture on the site so people could refer to it and modify it and we continue on this journey.

    I definitely have blood in my stool but it is fiberous (sp.?). Could it be mesh bits? If anyone has had this happen please tell me. I am going in on the 9th for examination. Starting to get frightened. My little voice cried out, I am innocent. Why is this happening to me? Am I not in God’s memory, why has the Father forsaken me? I am, I suppose indulging in a little feeling sorry for myself. Maybe I will go get some chocolate ice cream!

    Hope you all have a joyful Easter.

    Bejah

  24. justme says:

    Bejah,

    Where do I start? At the beginning I suppose.

    After I had mesh surgery in 2006, I became very ill and never recovered. I had to keep working.

    The original doctor surgeon was so mean to me, really bad to me. I had never experienced anything like that before from any man, especially a surgeon doctor. He called me names, (so did others) and I am very passive and shy. He said I was a diva, refused to give me more pain meds than the 30 he gave on discharge that were very weak. Your dentist gives stronger meds than surgeons.

    He said no other female had ever complained about the mesh like I had..and then within two weeks of the surgery, he dismissed me. OMG the way he and his office staff treated me was hell. It was like they knew I would be calling and crying and screaming in pain. I could tell they had been through this before with other female patients, They were well rehearsed on their actions and answers. What some staff members will do to keep a job, even immoral & illegal acts was heart breaking. And some just like excerpting power over women.

    No other doctor would take me post op. I ended up in the ER and the doctor who dismissed me told the ER doctor I was a pain seeker, a drug seeker.

    In reality, I was holistic. My family and I never drank or took any drugs unless absolute called for. I had to pass drug screens at work. I was younger then. I had children, a great job I loved, and was going to college. Who had the time for pain pills that were not worth the hassle to ask for? I wanted to get well, and get back to normal, which never happened.

    The school campus was surrounded by people who would share anything you needed from them, and I was doing the right thing by asking the doctors, right? I would never do that, only from doctors. But, the minute you ask for pain meds, you are grilled and classified. They look you up, check your Facebook, goggle you, make notes, investigate, it is crazy. Sad, very sad.

    The ER Doctor was old, and had no pity on me. He did give me a small rx for pain and sent me on my way with no where to go. I collapsed on my knees in the parking lot and cried alone for an hour. He said he nor this big, huge, famous teaching hospital could help me. They allowed big bully doctor to put it in, but had no clue how the hell to treat it or get it out. No hospital was advertising the revision surgery during those years and still don’t to this day.

    Finally, a prayer was answered when a young resident doctor accepted me. He got me through post op and the rough time, but I could not stay his patient for mesh. He did not ever dismiss me, he just did not know what to do.

    I spent the next two years looking for a doctor who could help me. No luck..

    Then, I found a surgeon who did an explore surgery on me and told me the mesh had attached to my body and was a hot mess, but he could not take it out. He also told me I was a nut case because the mesh was not causing the pain. He told me it was in my head and I needed a shrink. He too, then dismissed me..

    I spent the next five years looking for another doctor and none of the 25 doctors I saw would help me. Doctor after doctor sent me away with no help other than recommending a psychiatrist, because I was not having complication from mesh they said, that was impossible.

    Now that attorneys have stepped forward to help women, warn the FDA, get the word out that mesh is bad, these same doctors and new doctors all say women just want to get a payday.

    I prayed and prayed and prayed to G-d and he did answer many of my prayers, but it took time. He has not forgotten you. All mesh victims old or young, rich and poor, all races, man & woman feel just like you and I most of the time, hopeless. You are not alone.

    When I am well or better, I am determined to join this fight and help as many mesh victims as possible not to suffer alone anymore. I am so sick now and I am a lot sicker than I cared to know. But, you are not alone.

    And this web site has been a G-d send. I do know that it is blocked in the search engines a lot of times. I watch. The swiffer police are really good, except when someone wants something removed about themselves. lol You can test search engines by going to the library, not just by your home computer, or phone.

    We need grants. There has to be a way to get grants. We need a victims fund for medical needs. The surgeons who do the surgery need grants.

    There is a banner I saw somewhere on the internet, maybe an attorneys website, that named tooth loss and other complications from mesh that I had never seen before. I will keep looking for it when I am able. I thought it was on this site, but I could not find it. It was really good and on point.

    Please hang in there. Please pray and pray and pray. I do know this, there is 100 times more information on mesh being bad on the internet than say 2 years ago. It may take a while longer for mesh to be in the for front on a regular basis, but it will happen. Doctors are slow to admit mesh is bad and I just don’t get it. I really don’t. They are not teaching mesh classes to doctors that are not in Urology. They are not in the know. All of us know more about mesh than all of them. We study it, live it and share the knowledge, they don’t. The interest is not there.

    This site, Jane, all of the attorney sites who write about mesh, & Dr Miklos & Moore have taught me everything about mesh. Good and bad. I read almost everything they have written, and I have researched their work, and I watched their youtube videos, even the ones that are surgery related. New information comes out daily about mesh.

    Attorneys need to update the old complications from mesh commercials. The info presented in the current format is outdated. Start adding the truth as well. I wish I could write those ads and make it look and sound more sad and honest, rather than saying you could get paid or MAY be eligible for compensation. Maybe add “now you can get justice because it is not in your head and we can prove it.” lol

    You are not alone. Will be praying for you.

  25. Debbie says:

    Thanks Jane interesting article I emailed this to out Health Department in my Province hopping they will email this out to our family Drs as a lot of them still seem to have this attitude that all of the symptoms and pain is in your head take two asprine and call me in the morning sort of attitude.This is coming from two pronoun Drs saying that this isn’t in our heads and we know our bodies better than them and the Drs should listen when the patient is telling them something is wrong I am going to also print a copy for my GYN to read as I see him this month to and he needs to be updated as far as I’m concerned thanks again great article.

  26. Sue McClanahan says:

    I first started on my long journey of illness and excruciating pain from the TVT sling, which I had, unknowingly, inserted when I had my hysterectomy in 2001. This led to my divorce and loss of health insurance. I was sent information about the complications of the TVT sling in 2012, and the problems sounded the same as what I had been experiencing. I requested a copy of my hospital report and this is when I found out that I had a TVT sling. I suffered for 11 years with doctors telling me it was in my head. I was referred to Dr. Miklos, who met me in Beverly Hills. He charged me $250, which took me almost a year to save. He told me that the pain was a loose stitch in my vagina and that the pain in my side was probably from scar tissue, which would costs me thousands of dollars to find out if that is what it was. I was devastated. What most people don’t know is that Miklos and Moore helped to promote/bring the TVT slings to the American women; a 30 min. surgery could net them thousands of dollars. Why would they want to have it go away? Dr. Moore says that most sling problems are due to improper installation ( https://www.youtube.com/watch?v=6z54eWbvue0). I finally got insurance, Medi-Cal, which had me go to several doctors, where I insisted they do the examination as told to me by Dr. Raz, God bless his soul. They found that part of the mesh had traveled to my side next to my hip bone. Most of the sling was removed, but not all. I am now going for test, t the end of this month, to find out if I am allergic to the polypropylene.

    • Bejah says:

      Sue, Another shocking and deeply troubling story. Thank you for making us all aware of it. How can a surgeon implant something in a patient without their knowledge or permission. This should not be possible and is another example of our governments abject failure in protecting its people. I would think a MEDMAL suit against this physician and hospital would be in order. I will be filing against hospital and physician as well. I do not recall if insurance companies pay for the testing you have mentioned but seem to recall a rather high cost. Can you share any of that with us? Thanks and take care…sending prayer for healing.

      Bejah

      • Sue McClanahan says:

        I did not find out until 10 years after the device was implanted. There is a 7 year time limit to file a lawsuit, so I am shafted on that account. I have Medi-Cal insurance, which is a CA state insurance, and they are paying for it. I will let you know how it goes.

        • Jane Akre says:

          The statute of limitations may not apply,,,,, it depends on the state and the venue you file in is my understanding … is it from the time you knew there was a problem? Many women are told for years there is no problem with the mesh…. so exactly when the clock starts ticking really depends as does your state…. please check with a competent attorney and don’t feel you are out of the running….

          • Sue McClanahan says:

            Thank you Jane, I will do that.

          • Sue McClanahan says:

            I talked to a lawyer and here in California you have within one year to file a lawsuit either after the known offence or after you find out about the known offence. It is a seven year period to file a complaint with the Medical Boards. So, I am shafted on both accounts. I had my appointment with Loma Linda’s Dermatology dept. and it was just for a consultation. They have put in a request for the test to see if I am allergic to the remainder if mesh that was left in me. Also, Jane I thank you so much for the updates. The research on the Mesh not being inert has brought up the realization that the six very sore spots I now have across my lower abdomen are possible residual effects caused by the mesh when it was removed. I just can’t seem to get this monkey off my back. I had high hopes that once the mesh was removed I would be normal. Wishful thinking. I am better in the fact that I don’t have part of the sling in my left side, but now I have other problems. I have another Dr’s appointment this Wednesday to address the scarring and nerve damage.

        • Bejah says:

          Sue, What Jane says is true. The statute provides for situations where it is the time you became aware that starts the clock ticking. Of course you may have to prove that so be prepared. But just because something or someone says “no’ don’t accept that. Dig deeper. Try harder. Never give up hope. Hope all goes well for you.

          Bejah

        • Bejah says:

          Wondering how you are doing Sue. Do not recall if you gave us an update after the procedure recommended by Dr. Raz, or the examination of the product that was removed and sent for analysis to determine the nature and extent of the toxins it leached into the body. Although this evidently still has not been proven sufficiently to date to present at trial I feel comfortable presuming it is only a matter of time before the scope and probabilities related to its toxicity are revealed to the world and even criminal prosecution becomes warranted beyond the shadow of a doubt..

          There is still so much I do not know but I am under the impression that health insurance companies are not covering what we should be calling “explant” (The opposite of implant is I guess is that clumsey logic) surgeries. I believe this is the medical terminology for the removal, or attempted removal of the permanent toxic petroleum derivative we have been generally referring to as “transvaginal mesh” or “mesh”. Grrrrrrrrr. It sounds like you are getting coverage from Medical. That is wonderful.

          Hope you are OK. If you learned anything more that might help others in this community and feel comfortable doing so please talk to us. Let us know how you are holding up.

          Bejah

  27. tammy says:

    I’m in so much pain an anxiety has completely taken over I stop have sex a year ago for the pain I’ve been treated so bad by the doctor because of my insurance but something. is going on I decided to get my well woman’s check up omg god it hurt so bad What inthe world is going to happen I’m totally. out of my mind now I’m truly praying to god this is so inhumane I guess this is the Times we have to live in no justice

    • Bejah says:

      Tammy, I am assuming you had your “Well Woman” exam (well woman???? really? These catchy phrases are dreamed up by the PR dept. Anyway I assume this was done by your “Primary Care Physician”. If you can self refer to a gynecologist or better yet a gynecologist and then after that self refer to a Urogynecologist (A Urologist who specializes in womens issues). Do not tell Dr. #1 you are going to Dr. #2 then get all the files and compare them. Might be quite interesting. Be sure to get all the image files including the physicians notes. This should help you get more information before deciding your next move.If you can get your pain level down to about a five then there are other things you can do to bring it down more like swimming, yoga, making your mind focus on someting else, something you enjoy….and there are other things as well. There are Naturopathic supplements for pain that you injest and some that you rub on the skin. Also muscle relaxants and anti anxiety medication can help when used in concern with other things in your “toolbox”. Hope you are feeling at this writing at May 4th. Take care,

      Bejah

      • Sue McClanahan says:

        Thank you Bejah for being involved. I posted an update today, so for the sake of repetition I won’t re-post my update. I just wanted to add to your post to hang in there. It is a long journey my friends, and hopefully those who have gone through the early battles from trying to figure out what is happening to us to make us so ill and in such pain, to fighting those who have not only hindered our need for the truth, fight those that have done and are doing this to us, and to make sure this doesn’t happen to anyone else. I will keep updates. Unfortunately with my fibromyalgia and chronic fatigue I have a hard time on some days to do the simple things such as get out of bed and even think straight. Today is a better day, the weather is cool– which helps,and so now I play catch-up.

  28. Sue McClanahan says:

    One more thing. I contacted Dr. Tovia Smith who co- wrote: “Pathologic evaluation of explanted vaginal mesh: interdisciplinary experience from a referral center”. Smith TM, Smith SC, Delancey JO, Fenner DE, Schimpf MO, Roh MH, Morgan DM.

    Female Pelvic Med Reconstr Surg. 2013 Jul-Aug;19(4):238-41. doi: 10.1097/SPV.0b013e31829996e2.

    PMID:23797523. She was kind enough to answer my question about how to find the residual effect of explanted mesh on live patients (not on tissue samples). She emailed me back: “MRI is the closest we can get to seeing inflammatory stranding or increased uptake in the setting of mesh complication. 3D US is also promising but I am not using this so have limited knowledge on it. I wonder what a PET scan would show with increased uptake given hypervascularization.

    I am not using any imaging regularly unless I have concern for bone infection. Clinical impression with exam is usually how I decide to manage the patients”. Dr. Tovia Smith is located in Richmond VA in case there are any of you out there who need a doctor for their mesh surgery.

  29. Denise Brzowski says:

    I had mini arc from American mesh done in 2009 my health has gone down drastically and it’s my body and I know it’s from this! What does a person do if you Cannot Even Find ANY doctor who even believes you Not even 1!!!!!! What do I do??? The only insurance I have is Medicaid ,Help Me Please!

  30. Denise Brzowski says:

    I live in New Caney Texas

    • Jane Akre says:

      Because he is also in Texas and may take Medicaid ( I don’t know this ) you might try this expert in mesh removal….He will believe you!
      Dr. Phillippe Zimmern in Dallas. U Texas Southwestern Medical Center, Professor Urology, 214-645-8765, 214-648-4765

      • Denise Brzowski says:

        Okay thankyou!

      • Denise Brzowski says:

        Thank you! That’s a little far, do you know any in the Houston Texas area? If not then I’ll definitely call him!

        • Jane Akre says:

          Having a mesh situation addressed is not always going to be convenient. I’d go to the best rather than the closest. Otherwise you may find yourself in the round-robin of mesh removals with varying degrees of success.

  31. Jayne Gallagher says:

    I am miserable. My mesh is ten years old. I have had between 4 and six UTI’s per year for the past 4 years. My lower left back is always sore. So much for not taking too many antibiotics – too late. No one is concerned but me. My primary just says it’s a woman’s condition. My urologist said he hasn’t had any other complaints. I feel like this is gonna kill me

    • Sue says:

      Jane,

      I am so sorry that you are going through this. I too had my mesh since 2001 and finally had most of it removed March 2014. I found out that I am allergic to the polypropylene, which is why I still have pain, chronic fatigue, and fibromyalgia. Let me tell you, it has been one hell of a journey. Most of the problem (aside from the physical problems), is the lack of Dr’s who are willing to help. My sister had 2 failed mesh operations, she lives in Mississippi, and needs a third, but she cannot find a good Dr. to help her. I live in CA so she was able to see Dr. Raz in LA. This Dr. is our best advocate. He takes medicare. I don’t know where you live, but perhaps his office can steer you in the right direction. I only have Medi-Cal, which his office doesn’t take, but they helped me find Dr. Hardesty at LLUC. Also, Dr. Miklos was one of the first Dr’s I went to and he pretty much blew me off.

  32. Jayne Gallagher says:

    I am in New Jersey.

    • Dottie says:

      Jane, I am in Delaware. I can’t even find any radiology center that can tell me if my mesh has gone into my stomach,hips,etc. have you been radiologically diagnosed. How do you know for sure that it is MESH causing problems??

      Thanks for any info.

      Dottie

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