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Estelle Finds Complete TVT Removal

Estelle Tasz Hugs Dr. V

Estelle Tasz Hugs Dr. V

“Estelle Tasz, 38, sat on the plane heading to St. Louis for her second pelvic mesh removal in as many months. She had surgery one month earlier at the University of California Los Angeles (UCLA) for removal of her transvaginal mesh, a TVT retropubic sling made by Ethicon (Johnson & Johnson). However, one hour after she was put under, she was out of surgery.

Estelle said it never felt like she even had surgery because she still felt the pain from mesh inside her pelvis. UCLA had not been able to remove all of her polypropylene mesh.  Having undergone four removal surgeries in the past, Estelle, who is a nurse, says the surgery provided her little, if any, relief.

Read background story on UCLA trip here.

On the first leg of her flight to St. Louis Estelle sat next to an older man named “Nate.”  Was she traveling for business she was asked? “I’m a talker,” she says and Estelle volunteered she was traveling to a hospital in St. Louis to have plastic pelvic mesh removed. Ironically, Nate said his 88-year-old Aunt Estelle had had a mesh sling and hadn’t done well with it for as long as he could remember. Aunt Estelle had undergone 22 surgeries and was in a wheelchair still fighting.

He remembered her always being in the hospital.

“When little kids ask, ‘When will she be back,’” Nate said, “just tell them every minute she’s away is a closer minute she’ll be back. Tell your children that it got me through a lot.”

His whole thing was we are fighting the same fight, though not in the same way.

Estelle says she handed him one of her small wallets to give as gift to his daughter. Nate helped her down the ramp to catch the next leg of her flight.  He handed her his ticket so she’d remember the time and date they met. “He was so genuine. I’ll never forget Nate,” said Estelle.

Nate provided his email and told her to stay in touch, even though he knew how the story would end.  “I know you’re going to go on to great things,” he told Estelle.dr v and dr wood

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For what she hoped would be her final mesh removal she chose Dr. Dionysios Veronikis at the Vaginal and Urogynecology Institute at Mercy Hospital in St. Louis.

A few days prior, Estelle had met Dr. Veronikis for the first time and after several phone conversations she felt confident in his abilities. Mercy Hospital has a growing mesh removal section and Dr. Veronikis and Dr. Sara Wood are now seeing ten to 20 patients a week with about 65 percent of the patients being seen for mesh removal.

Pelvic mesh is routinely used to shore up pelvic organs that drop, sometimes through the vagina, due to childbirth, pregnancy, aging and weakened pelvic floor muscles. The mesh used is generally polypropylene, a polymer product, and it is placed under the urethra for support to help with urinary incontinence or in the pelvic floor to treat pelvic organ prolapse.

Tasz mesh

Tasz mesh

On Tuesday August 5th, Estelle underwent her 4.5 hour surgery. Dr. V retrieved the remaining 17 centimeters of mesh. He showed her the image. The mesh had the familiar blue color through it.

 

Estelle at UCLA

Estelle at UCLA

“Finally I was told the truth” she says.  Finally I met a doctor who cares, who is a doctor by all meanings of that definition.”~ Estelle Tasz

 

 

Complete TVT Removal: Vaginal and Abdominal Incisions

Akre and Veronikis

Akre and Veronikis

I wanted to travel to St. Louis to understand what Dr. V did differently from other mesh removal doctors and to get a full appreciation of the different types of mesh and how they are placed. The graphic surgical still shots don’t always tell the picture to the average viewer.

Dr. Veronikis explains in his new website here.

“You cannot have a full TVT removal without an abdominal cut. Absolutely” he says.

“Dr. V” as he’s known, is a sub-specialist in gynecologic and reconstructive surgery at the Vaginal Surgery and Urogynecology Institute at Mercy Hospital St. Louis, Missouri.

TVT and TVT-O, surology.com

TVT and TVT-O, surology.com

The surgeon firmly believes transvaginal tape (TVT) removal must be addressed through both a vaginal incision as well as abdominal where the mesh is anchored to the abdominal muscles, fascia and tissue under the skin.

TVT differs from a TOT implant (transobturator tape) which runs laterally and exits through the obturator space.

He insists it is the only way to do a complete TVT removal he says. Anything less likely leaves behind the mesh arms anchored in the abdominal wall and retropubic tissues.

Though a tedious and meticulous procedure, he locates the mesh, first through an incision in the vagina. Working in rotation, he carefully frees the tissue around the mesh, uses fine scissors to cut and slightly tugs the mesh to free it. It is a slow, meticulous process working up each side of the mesh, which has been freed from under the urethra where it was originally placed to treat urinary incontinence.

TVT removal, Dr. V. website

TVT removal, Dr. V. website

One side then the other, working up as far as one can safety travel up past the urethra and into the retropubic space, the space behind the public bone. Then, through the abdomen he starts working down from where the mesh exits again in a rotation of procedures, using cautery and a refined scissor technique as well as a gentle tug working down the mesh toward where he has already been freed in the vagina.

The goal is to meet somewhere in the middle.

Dr. V. has produced a series of videotapes showing the technique to be used to teach others, and to educate the patient. At one point in the video which he showed me, the mesh actually had been freed to the point when it actually pops out of the abdominal space with a slight tug.

Incorrectly referred to as a “tummy tuck,” it actually is performed to make surgery easier and to rid of the pannus or a hanging flap of skin that has been previously sliced during a C-section or a hysterectomy. The doctor attaches the top skin of the abdominal cut to the bottom skin which has been removed in a slight smile. That way any dead skin from previous procedures as well as excess tissue can be eliminated making the surgical area less prone to infection.

Akre and Tasz, St. Louis

Akre and Tasz, St. Louis

The procedure is different from a true tummy tuck performed by a plastic surgeon in that no liposuction is performed; there is no procedure under the rib cage and no relocation of the belly button.

The visit to St. Louis allowed me to visit  Mercy Hospital, see Dr. Veronikis’ mesh training videos and accompany Estelle who needed help traveling. Not only did I receive a lesson in the different types of mesh implants, instruction on the retropubic space as well as the obturator space, but I also got a lesson in the history of incontinence treatment over the last century.

Dr. Veronikis, who was trained at Harvard, believes this is the “darkest chapter” in female pelvic health treatment.

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PART TWO CONTINUES HERE:

A story does not imply an endorsement or medical advice. Please consult with your medical professionals concerning your personal care. ~ ja

Continued from Part One

dr v and dr woodDr. Dionysios K. Veronikis, M.D. is a specialist in vaginal surgery and urogynecology who trained at Massachusetts General Hospital, Harvard Medical School in Boston. He heads the Vaginal Surgery and Urogynecology Institute at Mercy Hospital in St. Louis where he and his surgical partner, Dr. Sara Wood, perform 10 to 20 pelvic surgeries a week with more than half of the procedures for mesh removal. They are among a handful of known mesh removal specialists to handle the hundreds of thousands of women who need pelvic surgery following the implantation of polypropylene mesh to treat the common problems of incontinence and prolapse in women after having children.

Despite four previous attempts to remove the polypropylene mesh, patient Estelle Tasz, 38, knew her transvaginal tape (TVT), made by Ethicon, had not been totally removed. The trained nurse still felt the plastic mesh that she’d received to treat her incontinence. She chose “Dr. V” as she calls him for what she hoped would be her final complete mesh removal.

Estelle Tasz at J&J headquarters, April 2014

Estelle Tasz at J&J headquarters, April 2014

She made the trip to St. Louis and I arrived the day after her surgery help Estelle get home and to learn about the different types of mesh used in women and their placement. It was only truly made clear with a 3-D plastic model of the pelvis and through watching mesh removal videos which are now online on a website Dr. V has just established.

See it here:

Darkest Chapter

Dr. V had called mesh the “darkest chapter” in gynecological history. Something that was supposed to treat the conditions of incontinence and prolapse in women, common after childbirth, have actually made things worse for women, he says.

He particularly dislikes mesh kits and TVT-O named for passing the arms of the mesh through the obturator space and into leg muscle and possibly nerves.

“Mesh prolapse kits were just a bad idea. I don’t know why so many went down that road. With all of those mesh arms and a massive amount of mesh and the one size fits all approach. Every woman is different,” he says. Dr. V believes they are defectively designed.

 

TOT sling  Scottish pelvic floor networkAbdominal Cut

He explains and insists “You cannot have a full retropubic TVT sling removal without an abdominal cut.”

“You cannot remove the entire retropubic TVT sling mesh with only a vaginal approach and you cannot remove TOT (transobturator tape) without groin incisions. When I am trying to get all of the plastic mesh out, I need to make an incision at the mesh exit sites or I am cheating women from getting a full removal of the mesh.”

To get all of the mesh out, Dr. V states the only way to proceed is vaginally and abdominally for a retropubic sling. To remove mesh one must start the removal the way the mesh went in, that is vaginally. If you have a mesh exit site out of the skin you have to make an incision at the exit site to remove that portion of the mesh. It’s common sense, he says.

Dr. V talked to Mesh News Desk editor, Jane Akre

“If a women has a vaginal mesh erosion, that can be addressed with removal from the vaginal site with a partial removal. You educate the patient and counsel them; offer options and let them decide what is best for them and then give them what they choose.

“Some women will ask, ‘Do I need that abdominal portion removed?’  I say not to treat the erosion which is in the vagina but that does not remove the entire mesh. As long as you’re honest, you proceed. Have I removed every TVT sling abdominally? No, because a patient says they just want the eroded part removed, they want to leave the rest alone.

“The next question is can you go back later and get it? Absolutely, you can do a removal at two different times.

“I do feel differently about mesh prolapse kits and this is where the partial removals become a surgical challenge with the multiple arms. With mesh kits I absolutely advocate total removal of the mesh over the rectum or under the bladder with the arms at one time.”

Are you saying most mesh removals are not complete unless there is an abdominal incision?  –     “Correct. To completely remove TVT and TOT slings, one must make additional incisions at the exit sites, the abdomen for TVT, the groin for TVT-O. Prolapse mesh kits are not in this category. They can be removed from a pure vaginal approach. If a patient is wondering how much mesh was removed, she can obtain her pathology report and add up the pieces. Hopefully, the pathologist measured each individual piece, sometimes they don’t know to do that. Pathologists weren’t measuring every piece. Add the length together. Although all women are different, look for 18-22 centimeters for TOT mesh depending on the woman’s pelvis and for TVT removal maybe 24-30 centimeters for a TVT retropubic sling. A larger woman will have more mesh.”

We know carrying children and giving birth is one factor that contributes to prolapse so are women with C-Sections are spared?  –    “Those women almost invariably their pelvic floor is spared they don’t have incontinence, pelvic floor prolapse unless they are habitual straining. Childbirth is not the only trauma. Living longer, asthma, constipation, heavy lifting all contribute to pelvic floor prolapse.”

You don’t routinely use ultrasound – why not? –     “If the mesh implant is intact, or intact and eroded and even visible on exam you totally don’t need ultrasound. How does it really help you? Perhaps to confirm that mesh is left after partial removals. OK. However, it does not assist you in the OR. It may point you in the right direction for exploration. Will the ultrasound see all the mesh? Could it miss some? I rely heavily on clinical parameters, previous operative reports, sometimes the implant log, using clinical exam and the patients’ pain as well as her symptoms.

“Invariably, at surgery, I make sure I double check during a mesh removal that I have removed all that I can remove instead of having the mindset that I can return in the future for another mesh removal. The only person I could not find mesh in had a TVT Abbrevo implant, who had previous mesh removal, who also had an ultrasound. Ideally, if you could do surgery and while doing surgery you could simultaneously ultrasound the surgical field to look for mesh, well, now you are going beyond surgery. That would be wonderful.”

What about a patient who’s been diced and sliced after a dozen removal attempts? –     “There is a patient who had 22 surgeries and I still got her mesh arms out because she still had some mesh remaining. I’m not sure ultrasound would have penetrated well that deep in her pelvis, we are talking 10 or more centimeters to reach that depth of her mesh arm.”

With that many surgeries how can someone say that’s not scar tissue? –    “Sure, that can be a very tough call. One may over call it to avoid under calling the diagnosis. In the OR,all I need is one mesh thread. If I see one thread I’m on it.”

To what do you owe your success with mesh removal? –      “It has to do with being a vaginal surgeon, not just being a gynecologist, a urologist or a urogynecologist or someone who specializes in laparoscopic or robotic surgery. You need a subset of specialists who are vaginal surgeons.”

Why not use imaging as insurance?  –    “One can, but mesh doesn’t migrate. Mesh doesn’t have legs, they don’t walk and there is no fluid to push it. It’s right there. It’s not going to migrate. All my mesh removal pictures are without the use of ultrasound.”

Can’t scar tissue cause mesh to shrink? –    “Yes, that will cause mesh to shrink which is why you don’t want a mesh product that is too stiff you want to it flex and bend a bit. It’s like an empty tractor trailer. If you have ever seen an empty one next to you on the highway, it has a convex curve to it, but when you put load on it it’s designed to flatten out. Therefore, all implants are designed to behave a certain way with “load”, stress placed on the body. Even native transplanted tissues that have a perfect function in one part of the body, will not behave the same when transplanted. Take skin for example, it starts to shrink the second it is removed due to inherent interruption in the continuity of the elastic fibers.”

Do you agree with the reclassification of pop mesh into class III? –    “Yes. I don’t think mesh kits should be on the market, as a surgeon I’d like to have the availability to be able to use it with proper counseling of the risks versus benefits. Now if there was something better let’s bring it on. However,you can’t fix these defects in some women without implants and an option is mesh.”

What about TVT-O? It was found defective in a courtroom? –     “I think the procedure is defective. I don’t think we should go into the obturator muscle and leg muscles. No one does a fascia lata sling, abdominal fascia sling or cadaveric fascia sling going in the obturator. There’s never been a single report of a TVT-O sling done with fascia,  why? The TVT-O is a different concept it goes under the urethra and laterally flares out. It’s approach exits the pelvis and unites two different organ systems.”

See the history of TVT-O developed in 1907 by von Giordano around the urethra (here).

The history of slings (here):

Is there a single solution for mesh removal? (here)

 

The TVT mesh you still use. Why? –    “ I do surgery and I use implants to treat a condition and improve a woman’s quality of life. The patients in our practice do not experience mesh-related complications. Furthermore, if they should, I will be attentive and able to help resolve them and not dismiss them.

Of all these meshes, all these products are different, not just procedurally, but the materials are different. Perhaps the best way to describe this is that I do surgery and regardless of the implant, I prep my implant site exactly the same. If a different product was out there with uniform reliable behavior and results, for the way we do surgery, it would be simple exchange from one implant to the other. Mesh slings provide the best most durable and uniform product with reproducible results.”

What about autoimmune issues? Many women seem to be high reactors to mesh and are diagnosed with fibromyalgia, rashes even Lupus after their mesh implant? Could that be just a correlation? There seem to be too not to see causation.    –     “I do ask questions about fibromyalgia and lupus and a fair number have it before surgery. Is it that this inciting event really makes that a lot more noticeable? Perhaps. I’m acutely aware this is now on my radar and I keep looking.”

Do you have the ability to follow-up and determine if these autoimmune conditions improve some time after a complete explant? –      “Yes, I had a patient that was referred for mesh removal that had a severe reaction to a Bard Adjust sling and all her symptoms resolved.”

Many women report bacterial staph infections that are antibiotic resistant. They show pictures of their rashes breaking out all over their bodies. Are you keeping explanted mesh so it can be studied for chemical additives, polymer degradation?  –     “My policy is to send every mesh explant to pathology.   I’m reading the literature. The meshes are so different, so you really need to do proper test and analysis before it goes in and when it comes out. You have to use the same mesh comparing it to non-implanted mesh. You can’t compare a J&J TVT to the AMS Sparc mesh. You have to make these comparisons – the weight of the mesh, where was it made, manufacturing process? It’s on my radar. We don’t want to be hurting women we want to improve their quality of life.”

With TVT your adverse events, did you say were less than one percent?  –     “They are less than that. Some women cannot empty their bladder completely, but that can happen with a burch procedure. I don’t know, that may be an adverse event of just having surgery. It depends on how you define adverse event. Erosion or extrusion of mesh in the vagina is exceedingly rare. I’ve put in nearly 10,000 slings and maybe there were three or four in 2 pack a day heavy smokers. A bladder perforation that causes a hole in the bladder can happen with a burch, but it’s much more likely to happen with the sling. A poster we presented looking at 1 year of sling data showed a an adverse event bladder perforation rate of .25 percent This translates to maybe one patient in 400 undergoing a sling and the consequence is she goes home with a catheter for five days.”

What about pain as an adverse event?  –     “ I believe in removing the mesh or the fascial implant or the suspension performed with a suture. For pain, removing the mesh helps the patient, and the faster, the better off they are.”

What if a doctor wants to train with you?  –    “I’m not inclined at teaching everyone and anyone who says I want learn how to remove mesh. It takes a high degree of dedication.I’ve trained Dr. Wood. It would take someone truly dedicated at least a month by my side to train them to remove mesh. We need a master mesh removal surgeons dedicated to mesh removal and treatment in treatment centers across the country.”

Are you a consultant or preceptor for any mesh maker either now or in the past? –    “ I was a preceptor for BARD in 2005 for one year or so teaching retropubic sling only. I have not prior to that or since been a preceptor.”

One of the most important questions is about the cost? I’ve heard a mesh removal surgery can run about $30,000?   –     “I’m amazed, is that correct? For someone who didn’t have insurance at all I would estimate that at my hospital, for a patient without insurance, all fees with hospital stay for a typical complete removal of TVT would be maybe $10,000. I do 10 to 20 surgeries a week and about 750 surgeries a year, now with 60 to 65% for mesh removal.”

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Back home now, Estelle Tasz says most of her fight is now behind her. She’s heard before she is mesh free but she says this time the pain in her face is going away. “I feel empty but I feel full. It’s the weirdest feeling, it’s gone, it’s gone. I have a full life ahead of me and Dr. V gave me hope. He saved my life, as a mom, I can’t thank him enough for that.” #

 

 

 

 

73 Comments

  1. Michelle says:

    Estelle, I am so relieved that you have finally gotten help and pray this will finally bring an end to your suffering. You are a living example of “if at first, you don’t succeed, try, try again!” When the best surgeons in the world admitted defeat, you did not. I can only imagine the difficulty of putting your trust in yet another doctor, and I am so very happy that this time, it worked. It is a relief to know that more doctors are gaining the skill to remove mesh as UCLA is an impossible reach for many women. Thank you for being brave enough to tell your story, and thank you to the good surgeons who did their very best to help you!

    • Estelle Tasz says:

      Thank you, yes I almost gave up but it seems when I would think to give up the image of my 4 daughters woke me with even more fight in me!!! My message is there is an angel mine named Dr.V.. Don’t give up looking for yours,

      • Lilian says:

        Hi i did my 2015 and i have pain iam only 37 years I have two small kids that only I take care of and i have pain on my left side. I went back to the surgeon who did and she told me it cannot be takeing out. I felt soo bad like their is no hope that I have to live whid this pain the rest of my life, from sweden

  2. Aaron Leigh says:

    So happy! A competent and committed surgeon and a resolute patient, unwilling to let anything stop her from getting better, for herself, for her husband, and for her children. Mothers fight for their families always. What a great example of a good patient-doctor relationship!

  3. All Meshed Up says:

    Truly great news for Mrs. Tasz and ALL mesh patients. Although the article is about TVT, it is also about Polypropylene mesh removal. I would be greatly relieved to find another source for Hernia Mesh victims to have their mesh removed. Dr. Peterson’s surgical calender is months out and the few other Doctors experienced in mesh removal are well past the age of retirement.

    A “Growing Mesh removal Practice” is great news for Victims but it is also an indication of Market need and those capable and willing to meet it. It is one thing to remove the Mesh and it can be a totally different thing to repair what is damaged and left behind after the Mesh is gone. With some Hernia Mesh patients you still have a hernia and now a hole where the mesh was. Being able to repair that AND be better than they were before the the removal is what these mesh recipients are wanting.

    I am hoping that is exactly what this will mean for all of you women that are suffering. With your success, as with Mrs Tasz, it gives ALL mesh victims hope that being better is not a hollow promise. Best Wishes to All…

  4. Dawn says:

    Estelle, I am so happy you have been able to have all your mesh removed finally . I guess I am a little confused as to why UCLA Dr. Was unable to remove your remaining mesh ? Maybe I missed something in the articles somewhere 🙂 . That was still a complete sling left in you correct ?. Even though I had my removal done at UCLA, I have been recommending Dr.V to my friends. Closer for us ladies in the Midwest . Both my cousin and a close friend have great praises to sing about Dr. V, he was able to remove all of their mesh as well.

    Saying huge prayers for you for your recovery.. You are way to young to be living this nightmare. None of us deserve what has been handed to us by these manufacturers !

    PRAYERS FOR ALL OF US SUFFERING FROM POLYPROPYLENE MESH !!!!

    • Estelle Tasz says:

      Thank you Dawn and yes it was almost a complete sling and I’m sorry I can’t answer that question but I know now TVT is only removed fully thru abdomen, yes I recommend him to all mint too

      • Dawn says:

        I understand 🙂 ..

        You know the drill….. Relax as much as possible and eat right to give your body the nutrients it needs to heal.. You story just blows my mind !! I’m so glad we still have you with us… Miracle Mesh Survivor 🙂

  5. Paula LeCompte says:

    Estelle, did you have more than one sling in you? I had just a TVT sling and it was removed in LA. I am worried now …. was it all removed????

    • Estelle Tasz says:

      Hi Hun all I can say is I had TVT and I’ve since learned it is only fully removed thru abdomen , if you have any concerns your going thru I would check on it . I am grateful I did. Hope that helps!!

  6. La Isom says:

    I’m so happy for you Estelle! I’m going on Friday for my 6th surgery on the 15th of August to get the anchor removed. I pray this works. I’m in so much pain, nerve damage as well. I’m now walking with a cane. This pain Is so hard to bare. I pray us all blessings. This mesh Is no joke, just has turned my lifestyle upside down.

  7. Malinda Hamilton says:

    What a blessing ! I’m so relieved it’s over for you & just treat yourself as Queen for the next 5 weeks… So, excited that you gave Dr. Veronikis the chance. He is a wonderful, caring, dedicated & highly skilled on mesh removal. My pray is all mesh victims to be free from their pain,infections & other mesh related issues. God Bless you all !

  8. Tambrea says:

    What wonderful news for you! Praying for a speedy recovery. However this spikes concerns, I’m schedule to travele to Ucla for a consultation for my removal. Pls pm me so we can communicate more confidential .

  9. Tara says:

    “We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face. We must do that which we think we cannot.” – Eleanor Roosevelt

    Estelle, as I’ve followed your story for the past few months, I am simply so overcome with joy knowing that you are finally on the path to wellness. Your husband, will once again have his beautiful wife back, and your precious family will have their mommy back. I, along with many mesh sisters, and brothers face obstacles which we never know will succeed or fail. You give me a hope that I believe I had lost. After many failures, I was ready to give up. You gave, so unselfishly to me, and all during an extremely physically, and emotionally draining time for you; for that, I am forever grateful.

  10. Jane says:

    Estelle,

    You are a true icon. I don’t know if I would have had your strength to endure 4 surgeries. The first one was enough for me. Speedy recovery. Please keep us posted on how you feel.

  11. your story validates my opinion that we must not just pin our hopes on just one doctor at UCLA who has many successful mesh removals … and a wise doctor just recently told me not to discount those that have used mesh and may still occasionally use it , some of those doctors because of their experience in using it actually do have the skills to remove it safely…… and I understand the reluctance and mistrust to use those doctors for mesh removal….. just on principle! but do not let principle allow mesh to stay in your body for one minute longer than necessary when your body is fighting its presence and enduring erosion,extrusion and infection along with FBR! research, ask questions, research some more ….we are slowly finding more doctors with the skill needed to remove mesh as safely as possible and as completely as possible …….. Dr. V was on my radar for the past several years as is Dr. Hibner who is the expert on pudendal nerve damage , Doctor Margolis another …we need these doctors to to form an association where they can educate other surgeons and endorse them so we can confidently be put under their scalpels …….

  12. Betty Scott says:

    Dr Veronikis removed 3 mesh implant kits from my pelvis May 10, 2014. I had been in severe pain and had developed polyneuropathy due to my immune system attacking the nerves in my legs and feet. Since that time I have continued to improve physically. Tomorrow I will get the results of my recent blood work regarding my immune system. I feel the same way Estelle does, Dr. Veronikis is a truly skilled physician. I too was an RN for 43 years, the last 20 years I worked in the OR and made the mistake of trusting the implanting doctor to do the right thing for me. What a mistake I will not do that again. Thank God Dr. Veronikis has taken the time to develope the skills to remove this monster of mesh I was told could not be removed. He has given me my life back, thank you again Dr. Veronikis.

    • Jane Akre says:

      Betty- We need to track women who have had full mesh removals to see if their symptoms of autoimmune disease improve… An up to date database of six month increments might be anecdotal but might real the missing piece to the polypropylene mystery. Why are so many women getting sick with autoimmune diseases after their mesh implants?

      • Estelle Tasz says:

        Thank you Betty and continued prayers for health and good days

      • All Meshed Up says:

        Why are so many Mesh patients, period, having auto-immune problems, Jane. This is not isolated to Gynecological Mesh and I wish in talking about these problems ALL mesh victims would be included. Men and women who have had a Hernia Mesh implanted have had their lives and health taken away by these Polypropylene nightmares. These Hernia Mesh recipients also suffer from infections, pain, auto-immune disorders, loss of sex, loss of loved ones and family etc, etc.

        By blaming a specific type of mesh and not all of the mesh products, especially those made with PP, you are excluding an entire group of victims. I know it is not done out of malice but you emphasize Women’s mesh problems which should include Hernia mesh because women get hernias, too. Yes? But time and again when the argument is publicized, the message is jealously held by a specific group of mesh victims and survivors. You can say I am wrong but it is true. The J&J meeting demonstration was exclusively women gynecological mesh and not one Hernia mesh spokesperson was told about or invited to this event. If this had been known, there are some within the Hernia Mesh community that would have been there to show our support, as it should be. The truth to all of this is in the numbers of mesh recipients who all have suffered to one extent or the other and the manufacturer nor the use should be the factor.

        In our Country now it seems that each group has to have it’s own identity and insists on certain rights or publicity because they are ‘unique’. We as mesh victims and survivors should be identified as a huge mass of people that have been experimented on and have had our lives and bodies irreparably damaged. It should not be this Group with TVT, or this Group with Hernia mesh! It should be ALL mesh recipients, together, to help ALL of us and not just this group or the other.

        We all can agree that Polypropylene is the one ‘glaring’ common denominator in many mesh products no matter the Manufacturer or use. Yes? Then, we need to join together against that common denominator because in small ‘unique’ groups we can be discounted and overwhelmed by the FDA’s obfuscation and the Manufacturers Lawyers. Together as the very large Group that we Mesh Victims and Survivors are, we cannot be ignored anymore.

        I realize that women’s mesh issues can be more extensive and the stories are horrible. But please remember, there is a huge number of hernia mesh recipients out here and many of them are in the same similar situation as you women. And some of those suffering from hernia mesh damage are women, too. Can we try to remember that when the chance comes to publicize our concerns about mesh, please?

        My very Best Wishes to Mrs Tasz as her road to recovery begins. Although we are never the same as we were before the mesh implant, our appreciation for all of the things that make up our lives is surely expanded. You now have the chance to, hopefully, get all of that back and more. God Bless.

        • Jane Akre says:

          I agree All Meshed Up…. I wish the FDA had come out with a warning for all types of mesh but they failed to. The campaign was financed specifically to women and WE were fortunate to have that campaign since it made inroads for ALL mesh survivors. I understand your frustration but every step forward is one for everyone! ~ ja

    • Malinda Hamilton says:

      I say Amen, Mrs. Betty. Dr. Veronikis removed mine as well. I had two. I just can’t thank God or Dr. Veronikis enough…. Praying your results come back with awesome news…Blessings to you

  13. laurie says:

    I had FULL mesh removal with Dr. KIM. 3 weeks ago and it was not abdominal it was total removal of a tvt, anterior and posterior implant. Paula don’t be worried I flew 2,200 miles across country to get to her. I can only tell you of my experience. She got it out because I have pics and she showed it to me after surgery arms, anchors and all. However I did NOR have ANY Revision surgeries before her. I could Not walk three weeks ago hardly. So in my opinion it can and was removed ALL VAGINALLY. no abdominal cuts and I feel wonderful and that is just my own personal experience. God be with all of the suffering ladies….hugs

  14. Michelle says:

    So, wondering…can TOT sling be removed abdominally? I had a partial vaginal removal a few months ago, now starting to have some groin aching that I hope won’t get worse. However, the procedure to remove the end pieces of the TOT was described by my surgeon as being very difficult and brutal, involving slicing through the inner thigh and groin muscles and trying to “find” it. Did not sound like fun! If it can be done abdominally less traumatically, I would really like to know! Anybody?

    • Jane Akre says:

      Michelle- Since the TOT sling is laid more horizontally, it involves a vertical incision in the groin is my understanding. Where the mesh comes out is where you retrieve it from above in addition to the vaginal approach.

    • Bev says:

      Dr Raz at UCLA removed mine vaginally. I had quick recovery and feel much better now.

      I had 3 previous surgeries all of which were failures my problems increased with each surgury.

      Every women with mesh should seek out Dr Raz. When he enters the room it is like God has just come in.

      I question the need to enter the stomach wall. Recovery from that is much longer and can have negative issues down the road.

      Bev

  15. Anonymous says:

    I cannot give my name because I am in the middle of a lawsuit. I had two surgeries four years ago. The first was a cut and release. No one believed me, when I said it was worse after this. The second removal surgery was done via the same prior hysterectomy incision at lower pelvic area almost hip to hip. I still had pain after complete Gynecare TVT mesh removal. Physical Therapy with a specialist in the pelvic floor, chinese medicine (insurance covers) gave me quality of life after mesh removal but I am still on disability. To sufferers on the East coast, I suggest Duke University Hospital. Most any urogyno there can remove.

  16. Tammy says:

    Estelle, Praying for your recovery and God heal you from your head to your toes, and keep all hurt and harm from you. I want to thank you for being brave enough to share your story and hope with us. I have a appt with Dr V. And was wondering if I could speak with you about your experience? I have the Johnson and Johnson bladder sling as you did. I’m giving my phone number and hope you call. If you don’t I understand and I’m gonna keep you and your family in my prayers. Be blessed (859) 421-3998

  17. Sandy says:

    All I can say because I too am in the middle of a law suit is be careful about complete removal of a TOT thru the vagina. I thought I had beat the odds to a degree too only to find out yesterday that when it was removed horrible things happened to me! Things that will make the rest of my life a painful one. I lost it last night at someone and yelled at them and have cried since. Right now I feel hopeless. I feel frustrated, afraid and angry that someone did this to me! I am upst because no one wants to explain all of this to me. They say we can’t it happened because of the mesh and we can say it was not due to the mesh. All I know is I did not have these injuries before the mesh. I remember the doctor who took it out saying he had problems getting the left side out. I don’t know what my future will be and I just want to lose it. Will it help no but for once I don’t have to be in control, for once I would not have to be strong and believe everything will be ok.

    Estelle I am so happy you are getting help from a great doctor it sounds like. I will pray for you and all women who have been butchered by uncaring doctors. I feel like sending them a copy of the Oath they took as doctors. But money controls all

  18. Sandy says:

    SORRY! doctors say —-They won’t say it happened because of the mesh and we can’t say it did not happened because of the mesh. But there was no damage before the mesh. Duh you figure it out

  19. Tammy says:

    Hello Ladies, I have a law suit as well. The one thing I believe is if we tell the thruth, nothing can harm us. The thruth will set us free. The only people that we have that totally understand our situation is mesh survivors. We only have each other to lean on. We share our experience strength and hope. I’ve been going through this for awhile. I’m so thankful to have this site and each of you. As long as I tell the thruth, they can’t hurt me ANYMORE!!!! God bless you all.

  20. Ruth says:

    I am very glad to hear that there are more surgeons who have the skill to completely remove mesh. However, I do want to clarify one point. In my quest to find a TVT removal surgeon I questioned and researched many across the continent. Some believed the “arms” didn’t need to be removed at all. Others, who did believe in complete mesh removal, differed in their approach–laparoscopic, vaginal, abdominal–which was very confusing, as each one had his/her firm opinion as to what is the “best” or “only” approach. I chose Dr. Raz as the one with the most experience and greatest number of satisfactory outcomes, and was very glad I did. I know I had a full TVT removal, absolutely, without an abdominal cut. My husband and I both saw the two removed pieces, together measuring a full 24 cm. in length. I also watched the video of my surgery which Dr. Raz gave me, clearly showing the release of the retropubic portion from the abdominal wall via cuts in the suprapubic insertion points. It couldn’t have been more clear. I actually shared the video with one of the surgeons who disagreed with Dr. Raz, not believing it could be a complete removal. So I would say to anyone who has had mesh removed at UCLA, please don’t be frightened by conflicting opinions of other surgeons. I am sure they are also very skilled, but as for me, I’m glad I went the less invasive route by the “master surgeon” himself.

    • Jane Akre says:

      Thank you Ruth… many confirm your feelings about Dr. Raz as a master surgeon. I’m sure many would like to see your video…. there is no best or only approach and I hope the article did not convey that point-of-view. Your comments are welcome. ~ ja

      • laurie says:

        Yes this article this article is scarring ladies because it plainly states state true mesh removal cannot be accomplished without it. That is absolutely what it’s suggesting and that’s not true. You ate right there is more than one way.

        • Jane Akre says:

          Laurie – That is this surgeon’s opinion which he bases on years of experience. I believe we need to respect his point of view which may differ from others. Patients should gather as much information as possible before consulting with any surgeon.

  21. Bobbi says:

    All I can say is I have had two surveys and need a third. Scared. Have tumor of puss behind kidney. Pee microscopic blood. Body drained no energy. So scared to have fixed. Completely numb and sex hurts. Very little lining between bladder and vagina. Second surgery hurt so bad couldn’t walk for month. Worse thing is we are all going to loose in this law suit. Cause no one cares

    • Jane Akre says:

      Bobbi… would you like to be a little clearer… are you referring to mesh implants? Please explain. Do you have a lawyer? A Doctor? Thank you.

  22. Sandy says:

    We have to be positive about our lawsuits! It’s hard enough to go through all of this with out thinking all is lost. Will we ever be paid for what we have gone through no but if we stick together we can be strong and let them no we will not take peanuts for what happened to us. There is just to many of us to sit back and take what they throw at us. I have my down days too but my faith is strong and my trust in God is true. I have to believe he will take care of me and all of you too! Together the more positive thoughts we put out the more positive energy we get back. I am so thankful to Jane! Through her web sites I have found a couple of really strong supportive people who help to encourage me. We lean on each other and give each other strength! Stand strong ladies except when you are on your knees praying for help!!!!

    • Kitty says:

      Hi Sandy I have prayed for you. I know you were planning on going to Arizona to see your new Dr. I hope it went well for you. It is very sad to see Eric Holder go to Missouri and here we sit like Chopped Liver. If this mesh is so easy to be pulled out so readily—why has only a handful had it done?

  23. MarieAnn says:

    I had a TVT removed at UCLA. Dr Raz made small incisions above pubic bone and also a vaginal incision to get all of the TVT out. He snipped it under the urethra and then pulled out each side of the sling from abdominal incisions.

    I am now without the barbed wire feeling and pubic bone pain I had, the mesh had adhered to the pubic bone in one area.

    I recently had to go back for a fascia sling, made from a small strip of my own tissue. It is working well. I was very incontinent after the TVT removal ( I never had total incontinence even before the TVT was placed with my hysterectomy). I probably did not even need that horrible device!! It was “offered” with the partial hysterectomy!

    This was the second total mesh removal at UCLA. The first was the dreaded anterior prolift. All of these devices are just barbaric. Its like we have all been part of a Nazi experiment…

    • Kitty says:

      Hello MarieAnn—when was your mesh placed?

      • MarieAnn says:

        The TVT was placed in 2006 w partial hysterectomy. The prolift for bladder in 2009. The prolift went bad immediately, severe pain and erosion, bed ridden, etc. The TVT didn’t start to show signs of erosion that we know of until several years later and according to the first translabial US. I had the prolift removed first, and the TVT seemed ok, we left the TVT alone.The prolift was life threatening, major surgery. The TVT finally had to be removed March of 2013… another translabial US showed it eroding through my urethra. I also started having terrible gnawing like pain inside. All of this has been a total nightmare. I had to retire from nursing early due to all this mesh mess. Praising the Lord for the medical help I received, for my family’s support as well as all of the wonderful women I have met through this ordeal. This website is such a blessing!!

  24. Mary blanks says:

    Estelle I’m so thankful you finally have all your mesh removed. I’m so confused because I thought it was removed in UCLA. Remember I asked how in the world you were doing all that you were doing! I also remember I inquired who told you you needed four more surgeries immediately after leaving UCLA or maybe you were still in California on the beach. I wondered how you possibly be walking along the beach even after being septic, and that surgery! I know after my surgery with dr. Raz he couldn’t tell me if I’d need additional surgeries until I healed and returned for my 6 month recheck. Dr. Raz God bless him was definitely able to remove all the mesh vaginally he removed the anchors in my pelvis as well. I still believe you must be checked with the translabial sonogram , because a doctor explained to me that this mesh is designed to blend with our flesh so that it becomes invisible , and I surely don’t want anyone making numerous cuts in my belly trying to find it. I understand that some drs are trying to remove mesh in that manner. I m afraid that this method will have women already suffering to have to endure more surgeries than they need. When I was finally string enough( for at lease six months it was all I could do to make it from my bed to the bathroom, in fact my post operative instructions not to walk far grocery shopping was prohibited), I did not need any further surgeries. I have other procedures that I need, and some of us that are mesh endured will be fighting the physical damage done by this garbage ! Have you shared with us why you were scheduled for another removal and surgeries while in lUCLA ! I missed it. Now you have to go back to UCLA for surgery! I probably just don’t understand what they are doing. Estelle when you speak to Dr. Raz make sure you inquire about him using mesh . I did ,he said that when he saw the damage all mesh does to us he completely stopped using it. My genecologist here said the same. There is absolutely no good mesh that can be used in us. These drs are just playing Russian roulette with our lives hoping it won’t hurt this one! I’m just praying you are allowing enough time to heal between all these surgeries! You may be the only one of us that was able to go have fun immediately. I know all my mesh was removed my Dr. Raz and his team. They saved my life! Girls I was never in my life nursed with so much care and compassion as I was in. UCLA! If I email him normally I have an answer before four hrs past. Many times he answers in an hour. He has never taken a day! I know had I been anywhere else I’d be a dead woman!

    • Kitty says:

      Dear Mary Blanks You are the first lady that gave me hope thru your story. And my thoughts completely about the mesh being (emeshed) NO PUN INTENDED in other organs et al. There have to be other Docs besides Dr Raz—-otherwise some of us are dooomed. Thank youy so much for your words of wisdom and God speed to you.

    • MarieAnn says:

      Mary, I would be dead if I had not been able to go to UCLA too. I also, could not do much of anything after the prolift was removed. It was a close call, but was in such good hands, Dr Raz has skilled surgical skills for sure.The nursing care was exceptional.

      I do know what a hardship traveling all the way across the country was. My husband and I felt we had no choice, we were still raising our family, and I really was bedridden in terrible pain and suffering. It was so frightening.

      I also went back to UCLA for some repair surgeries as well as the TVT removal as I stated above. The translabial US is definitely a must for finding the horrific mesh that indeed does it’s best to consume our tissues. God bless.

      Kitty, there is hope. I am praying for you!

    • msm says:

      Mary, how long did you have to be away from home? I’m trying to figure out logistics. Haven’t figured out how to fund it yet.

      I wish my doc would go to learn from Dr. Raz and come back here to teach his students. It seems that more docs at teaching hospitals should be interested in learning in order to pass it on to their students. They are sure to encounter mesh patients after they graduate as our numbers will increase exponentially.

      How can docs even debate the necessity of and procedures for removal if they haven’t bothered to explore the options? I guess they are just relying on AUGS pro-mesh position statement. AUGS and Boston Scientific have joined hands in the “PFD Alliance” (http://www.voicesforpfd.org).

      I digress. I need to focus more on getting treatment where ever and by whom ever is qualified. Thanks for any logistical info you can give.

      • Estelle Tasz says:

        Thanks Mary and to clarify have never walked on a beach in California if I did not say it or release that then please assume it’s untrue, I was told my mesh was removed and I needed additional surgeries. I have never waivered from that. I trust dr.V 100 percent he is honest, skilled, caring and once again the pic of the mesh My mesh is the only statement I can give, we are smart women please don’t use your own bias and fear to form an opinion because in the end I’m mesh injured but I’m mesh free!!!thank you

        • Mary blanks says:

          Estelle, I’m at a lost. It was the picture you sent me on the beach. The questions I asked is because of the fact that I was a runner 4 yes ago and I press all I can and I’m still not half way recovered! I asked just as I did before , because I think I and many more are wondering what I am doing wrong! Every time I talk to you Estelle you take it as an attack. Although I really felt led to reassure those that had gone to dr. Raz that we too are mesh free. The article made me question for a minute or two if I indeed having gone to UCLA .

          Another thing Estelle remember I was one of the ones who encouraged you on the phone that you could indeed make the flight to UCLA. I thought we were sisters in this mess. I’m asking you about the surgeries because of how they were planned. I didn’t want a dr to do to you what was done to me.

          I too love jane , and Estelle I haven’t had the privilege to know the other person. That was a wonderful reply the other sister who is fighting for her life. All that really needed to be said but maybe shet herself needs to read it and Estelle you please read it , this is the second time you’ve treated me unjustly.

          We’ve been praying just for this that other drs would truly learn first that we need help , and then learn how to remove it. Thank God this is happening, but do we have to try to discredit what we know to be true. Zovirax been on these blogs for almost three years now and many women inbox me, and I’ve heard some horror stories about drs. Cutting them in there abdomen and some didn’t help them. What in the world is going on!!

  25. Teresa R. Jones says:

    Oppositional defiant disorder (ODD) is defined by the DSM-5 as a pattern of angry/irritable behavior, or vindictiveness lasting at least 6 months, and is exhibited during interaction with at least one individual that is not family. I open with this because so much has been made of Estelle’s claims for her surgical path. It amazes me that to question any woman’s path to help and healing in her mesh journey is simply rude. I have known Estelle for nine weeks, I came into her life one Saturday when she was frighten from a serious infection that had exhibited sores on her face. I had the research and I had to take a long pause to ask her if she also had any sores on her breast and then proceeded to explain it could spread to breast cancer. It was a long Saturday that we spent by phone and exchange of research.

    I have waited to post to this article until I felt I had something to contribute to the mesh community as a whole not just Estelle, well here is my contribution:

    We as women are all unique some are quiet and some are bold. I was raised by a bold woman, Modean my Mom. Estelle is my contribution to each of you who read this comment. If my Mom, Modean had been an implant victim she would have been as direct, bold and loud as Estelle. She would have tore this nation in two to find her solution. Why? Because she would want to live for her children. Every conversation I have had with Estelle, focused on Mike and her children first, I have heard her anger, sorrow, confusion and fatigue.

    I ask that we lay aside behavior that is angry and resentful of others as a community. I assure you Estelle has done all she has done for one reason, survival from mesh. We all can do better for one another. I am sure in posting this some may have ill remarks. I hope they end with me. You see, Estelle, Aaron and Jane were all strangers and we have no agenda except to get Mesh off the market. I am a Grandmother in Alabama. I am worn out from my own battle. Estelle simply called me one day and asked, ” are you real” she wanted to know if I would research some things for her concerning her infection, she wanted to know if I would add her name to my prayer list, she wanted to know how I had survived the madness of mesh for over a decade. I am so grateful for her call, I am grateful for her strong spirit. I am grateful Dr. V. checks on me because Estelle asked him to. I have lost many friends for standing with three women I admire. Each fighting for the ugly dark chapter in women’s health MESH to end.

    Often the horrors of mesh and the drama of mesh blur the truth of mesh. Transvaginal mesh is a failed attempt to complex pelvic surgery. I am a victim of it and I have now found a sound and reasonable man to treat me.

    I would stand with these three women again. I think this story begins to open the doors to the future we all hope for an end to mesh. Mesh Explanting is an emerging specialty. It is a new frontier it is changing daily. I will walk through the doors of a physician this week who states:

    Here is his quote:

    In plain terms, it’s time to give up on this failed attempt to create a simple shortcut to the performance of what is truly complex surgery in the care of women. Prolapse is a complex condition. Recurrence after treatment is common. The surgeries are hard to perform. If we face these realities, explain them to our patients, & stop using mesh implants that add nothing proven in the care of women, our patients & our specialty will benefit greatly.

    Recommendations have been issued by some professional societies that this extremely problematic and unneeded material be considered for use only in surgeries to treat high-risk patients affected by prolapse.(3) The proposed definition of such patients includes those prone to recurrent disease, those suffering from recurrence, and those possessing comorbidities for whom “more invasive” procedures are not medically acceptable.

    Antonio R. Pizarro, M.D.

    Shreveport, Louisiana

    I cannot wait to meet him. I hope he and Dr. Veronikis become friends for they both have so very much to offer us all. Estelle thank you for being my friend.

  26. Kitty says:

    I concur with msm

  27. Diane says:

    I personally had my mesh removed by Dr V 18 months ago. It had eroded into my vaginal and was quite painful, and had been for 4 years. I searched for doctors who were experienced in mesh removal and found Dr V 2 hours from my home. What a blessing.

    He is very kind and understanding, he was also clear that mesh had just been thown out into the market and caused so many problems. He was able to remove all of mine in one surgery and I couldn’t have been more pleased. He recommended I file a lawsuit (I already had) and I believe he fully supported me. Thank God for someone with his skills, I needed him badly.

    I’m very pleased to see him featured here, so more women know where to find him. 18 months ago he was removing 2-3 meshes per week, I see that has grown significantly. The hospital is absolutely first rate, nicknamed The Palace on Ballas, I was incredibly impressed with the facilities.

    I completely endorse Dr V!

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