Get the Mesh Out! Doctors React to Patients Following FDA’s July Warning about Surgical Mesh

Nov 5th, 2011 | By | Category: Featured

Mesh removed after 3 months, Courtesy Liz Reece


NOVEMBER 4, 2011 – Last July 13 when the U.S. Food and Drug Administration issued the most strongly warning notice yet about complications associated with surgical mesh – women listened. (see back story here). So did men with the same sort of polypropylene mesh for hernia repair as did women with mesh for stress incontinence.

The legal community listened and responded too with frequent ads on television announcing the FDA decision that complications from transvaginal repair of pelvic organ prolapse with synthetic mesh are not rare and that it was no longer clear that the use of mesh was more effective than tradition non-mesh repair. Hundreds of lawsuits have been filed and cases may be heard next year.

It sounded like a recall notice, but not quite. While surgical mesh complications have included pain, infection, bleeding, organ perforation, mesh shrinkage and the return of prolapse or incontinence, the FDA is still on the fence about the future of synthetic mesh. And while a recall is possible, it is not thought to be likely.

Now surgeons are listening too after patients come in with questions and demands to get the mesh out.

MDND talked to a number of pelvic surgeons who are fielding calls and visits from worried and symptomatic patients.

 

Donald Ostergard MD

Donald R. Ostergard MD,  Urogynecology & Reconstructive Pelvic Surgery, University Women’s Healthcare, U of Louisville, Ky

We’re taking out mesh right and left for various types of problems and we’re going to see a lot more of it, “ Dr. Donald Ostergard says about synthetic surgical mesh.

“Mesh is the gift that keeps on giving. Erosion occurs, the vagina constricts and there is dysperunia, painful intercourse. You need multiple surgeries to get it out.”

Now at the University of Louisville, he and the residents and fellows are seeing cases of mesh complications that other physicians may or may not decide to remove.

“There is a complication rate is lower in incontinence tape is because there is so much less mesh put in – about ten percent. The more mesh the more complications” he says.

Dr. Ostergard has never been a fan of synthetic mesh.

“I gave a lecture to AUGS in 2006 on this topic and I was called a dinosaur who had his head in the sand about advances. As things have happened I feel vindicated. I wish this had been said some time ago. Polypropylene is not inert even though the manufacturers said it was inert.”

“It’s the biggest public health issue facing us now!”

 

Dr. Robert Moore

Robert Moore, MD, Atlanta Center for Laparoscopic Urogynecology, Atlanta, GA

“Patients who had mesh for any reason, if it’s included or not in the FDA warning are seeing the commercials by lawyers and say ‘I’ve got to come see you and have it taken out because it’s been recalled by the FDA.’ Some think it’s infected, should I have it out?” he says he is asked.

Dr. Moore says as a regional center for gynecologic health in the Southeast, they’ve always seen a fair amount of complications but the FDA notification has stepped up patient awareness. The five-fold increase in complication rate that was noted by the FDA in July, has pitted more experienced surgeons against those who were sold on surgical mesh “kits” and their ease and convenience for a financial bonanza.

Dr. Moore blames some less experienced doctors for the complications.

“One of the issues that has come out from all of this is that surgeons have implanted mesh without experience and not knowing how to handle the patient or are sending them to someone who can handle it. We are seeing them and I tell them it’s not the mesh, it’s how it’s put in and by who and how it was attached.”

Still the patients are concerned and nervous and they don’t want it in he says.

“That’s their decision.” And a patient who doesn’t want mesh is not a good candidate for surgery because of the legal liability.

Dr. Moore says that is partially why he and partner Dr. John Miklos are using slightly less mesh even though he says they already had a “judicious use of mesh with proper informed consent” with about 80% of procedures done laparoscopically.

He says ultimately the FDA notice will be a good thing because the patient is more involved and asking more questions and the FDA will likely require a registry of all patients who have mesh implants.

The most challenging removals are those involving larger pieces of mesh such as Avualta, though he doesn’t want to mention one brand over another. And even without mesh a patient can have complications and pain he says. Dr. Moore does not believe some people are just “high responders” or in the “contaminated field” that introduces bacteria during a vaginal mesh implant. Even without mesh a patient can still have pain and complications, he says.

“It’s never been zero percent complications.”

 

Dr. Shlomo Raz

Shlomo Raz MD, Urology, UCLA Health System, Los Angeles

With an busy schedule that any surgeon decades younger would aspire to, it is no wonder Dr. Raz is considered the “gold standard” of mesh removals. His administrative assistant, Elizabeth Vasquez tells MDND that Dr. Raz has four assistants and does 100 to 120 surgeries a month.

How has the practice changed since the July FDA health notification?”

“We’re being bombarded with people coming in with all kinds of complications that others have tried to remove but he can do it,” she says.

Vasquez says they fly in from all over the world. Recently women from as far away as Australia, Uruguay, Texas, the United Kingdom, New York, New Jersey, Florida, Iowa, North Carolina, friends, mother-in-laws and cousins all recommend Dr. Raz.

Dr. Raz is now booking for surgeries to be performed at the end of February. Vasquez says Dr. Raz sees 80 patients every Tuesday and Wednesday, 80 each day.  He does surgeries Monday, Thursday, and Friday and that includes removing synthetic surgical mesh, averaging about 15 to 20 a month.

While some women come in for pelvic health testing, Vasquez says mesh has taken over any procedures.

“It may not be the mesh but how it was put in by another doctor. Before our patients came locally and we were not seeing as many severe complications.”

Despite the cost, many of the patients are self-pay meaning they may shell out anywhere from $30,000 to $50,000 for a surgery. An additional abdominal procedure that requires three to five days in the hospital can cost much more though the clinic tries to work with patients to contain the cost.

Vasquez says what the doctor values the most are the hundreds of personal letters that come in from patients finally relieved of a life of pain.

“He reads them all.”

 

Dr. Daniel Elliott

Daniel Elliott MD – Urologic Surgeon Mayo Clinic, Rochester, MN

“At the Mayo Clinic we never used pelvic organ prolapse mesh so I’ve not seen a change at our practice since the FDA notification,” Daniel Elliott, MD tells MDND, but he also ads the clinic is fielding a huge number of telephone calls from women concerning mesh for various reasons whether they had it implanted to treat pelvic organ prolapse or incontinence. A couple of calls a week are coming into the Urology clinic that are mesh-related, he says “whether they express suffering from pain, erosion, or extrusion, or just a concern about having it removed.”

“We see a lot of patients coming in feeling they may have a problem from mesh that they thought was normal or were expected. We’re seeing a tremendous amount of concern.”

Dr. Elliott says the Mayo Clinic has innovated a surgical removal of synthetic mesh using lasers in additional to the traditional surgical removal, and procedure results will be unveiled at a national meeting. As other doctors have expressed, the more mesh, the more difficult it is to remove and the higher the chance of complications.

The Mayo Clinic in Rochester is averaging about 50 calls a week with concerns he says. “All they hear is FDA mesh and warning,” he says and they are doing a “huge number” of anti-incontinence procedures that are not part of the FDA’s warning which addressed specifically complications of mesh repair for pelvic organ prolapse (POP).

Throughout the Mayo Clinics, POP repair is done the old fashion way with sutures which Dr. Elliott says work as well as mesh. He says it was not an institutional decision by an independent decision by the doctors working throughout the Mayo system not to use synthetic mesh when a strong aggressive sales force push encouraged its use.

“The industry always pushes and its the job of the physician to push back.  All they want to do is push a product.  Independently we said “ ‘why’ ?”

With a suture costing $5, medical sales representatives pushing mesh added $1,500 to $2,000 to the cost of a procedure.

“Why do it if we don’t know if it will work or not? I was doing it for financial reasons.  For $5 worth of stitches, I thought it was more of a gimmick for surgeons who weren’t adequately trained. All of us here, at Mayo, I speak for myself, we all have advanced level training for prolapse.”

Mesh is used for transabdominal repairs to treat pelvic prolapse which, Dr. Elliott adds, is not part of the FDA warning.

 

Dr. Peggy Norton

Peggy A. Norton MD, Chief of Urogynecology, Pelvic Floor Center, faculty University of Utah, Salt Lake City

Dr. Norton talked to MDND by email and was asked how if at all her practice has changed since the July 13 FDA warning of serious complications associated with surgical mesh for transvaginal repair of pelvic organ prolapse.

“I am seeing more patients but WE NEVER DID VAGINAL MESH AT THE UNIVERSITY OF UTAH, (her emphasis) we are just taking care of other hospital’s complications.  They are difficult patients (because they had a bad outcome, they are unhappy, and they are in pain) and if the world were a fair place, all mesh complications would be treated at the hospital where the mesh was put in originally.  This would allow local hospitals to appreciate who is doing mesh, who has complications, who should be credentialed to put mesh in, and the overall risk/benefit ratio be appreciated.

“The mesh slings do have complications, but many, many more are done and the number of complications are both easier to take care of and more likely to completely resolve.

“The mesh for vaginal repair of prolapse is more difficult:  fewer are done but the number of complications are higher, more difficult to remove, and some of those patients will not completely resolve the problem.”

 

Dr. M. Tom Margolis

Dr. M. Tom Margolis, Pelvic Surgeon/Urogynecologist, Bay Area Pelvic Surgery, San Francisco

How has the FDA notification of July 13th changed the practice of Dr. M. Tom Margolis of Bay Area Pelvic Surgery?

“The only thing that changed is people are coming in and saying whatever you do I don’t want mesh in there, to which I respond ‘Don’t worry I won’t put it in.’ ”

As far as calls for mesh removals, he says they are coming in from states all over the country and even as far away as calls from Great Britain. This has led to a removal or surgery to correct a complication of an additional two or three a month, at this point slightly more than before.

“The number of people contacting me has risen significantly and I’m not advertising. I get tons of calls and emails. Business has increased about 5% and I was doing 40 surgeries a week to begin with. I’m happy people are finding they can be treated and can have these problems corrected,” he said to MDND.

The biggest complication and removal problems are posed by the larger mesh kits he says.

“They continue to be challenging and they are hard to remove.  The bigger the mesh, the bigger the mess,” he says pointing out the larger kits are the Apogee (AMS) here, Perigee (AMS) here, and the Avaulta (Bard) mesh kits.

Dr. Margolis does not implant surgical mesh transvaginally (through the vagina) because as he said to the FDA expert panel convened in September to consider whether to ban the medical device, the vagina is a “clean-contaminated field” that will always introduce bacteria, and the potential for infection.

He does use mesh laparoscopically for incontinence and occasionally uses biologics and sutures. #

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107 Comments to “Get the Mesh Out! Doctors React to Patients Following FDA’s July Warning about Surgical Mesh”

  1. Amy G says:

    Thanks again Jane, great information.

  2. Denise says:

    Thank you Jane for this information on pelvic surgeons.
    So the Mayo Clinic is not using transvaginal mesh (TVM) for POP repair but it is doing a “huge number” of TVM surgeries for SUI? Did I read that correctly? There are MANY women out there with pain and problems from SUI mesh also. Especially nerve damage. Especially from the TOT’s. Just ask Dr Raz. He KNOWS….
    Not one expert on the FDA’s OB-GYN Panel mentioned NERVE DAMAGE as a complication of TVM for either POP or SUI. Inserting TVM is a BLIND procedure and there are a lot of nerves in the pelvis such as the pudendal, ileo-inguinal, posterior femoral cutaneous, and obturator. I believe that nerve damage is undiagnosed and under-reported by the very surgeons who are inserting transvaginal mesh.
    I LOVE Dr Raz. He is a very skilled surgeon who is able remove mesh from the deep pelvis, where even the majority of the “best of the best mesh removal experts” still will not venture because it’s “too dangerous because of all the nerves and blood vessels in the area”. He is also a very compassionate and caring person. He is the best!

    • Jane Akre says:

      Denise- Dr. Elliott submitted his comments in support of the Public Citizen petition to have mesh recalled.

      See here:
      http://meshmedicaldevicenewsdesk.com/?p=493

      • Amy G says:

        It is unclear as I am uncertain if Dr. Elliott’s statement should be read as -They are placing a lot of mesh for SUI which is not part of the increased warning-…..or…. They are seeing a lot of mesh complications for SUI procedures and are doing those removals in spite of these devices not part of the 2nd increased warning. It is important to note the warning for mesh in the treatment of SUI is included in the 2008 warning.

    • Stacy says:

      I agree 100%! I had a t-sling put in December of 2012 and now I have all kind of problems, especially with my nerves. I now have Piriformis syndrome, Sciatica, Pudendal Neuralgia, and Coccyxdynia. I feel like I have glass in my vagina and bees are stinging me. I have a numb right labia, anus, and right butt cheek. My surgeon told me to go get therapy because it was back related and I said “yeah right, back of butt related”. To sit is to shit, otherwise, I have stay off of my butt to be pain free. I tried to work in pain like this at my sit down job for two months and I finally just couldn’t handle the pain and pressure on the nerves any longer. I have pains in places I have never had before. My hip, leg, and toes/feet.

      • Amy N says:

        I just had about 75% of mesh removed except the arms/anchors. I have piriformis syndrome now also. Just days after surgery I could barely walk feeling like my legs were going to “pop” off my body like a doll. Surgeon also informed me it was a back related issue. Have you found any relief or treatment possibilities for this? I can’t take anymore pain.

      • Janice says:

        I have the same symptoms ,plus some others constipation,nausea,rash and I get very warm all the time,had to change my diet ?cant walk at times ,I don’t sleep because of pain 24/7 ,it wake me up.but know one will take the mesh out,depression ,
        I’ve seen 22 or so doctors and all they want is to give me pills,and physical therapy,pain management !..,yoga,Zumba,acupuncture,I’ve tryed everything but nothing helps.im just having too live with the pain,I was told that the
        Pain isn’t a medical reason to take the mesh out,I have pain with everything I do it never gos away.

        • Jane Akre says:

          Pain absolutely is the appropriate reason to take the mesh out according to the experts. you need to consult with better docs… I’m sorry you were told that. Write if you want or post the question and facebook and we can find some compassionate docs in your area… Thank you for writing- jane akre janeakre@meshnewsdesk.com

  3. Amy G says:

    To date it appears there is no clear cut answer to “who is the perfect mesh candidate for POP or SUI” yet the FDA is doing nothing to limit the number of surgeries with mesh, leaving it to lay person reporting. Clearly something needs to be done as the current system has no method for regulating surgeon qualifications or tracking the thousands of women already implanted.

    Minimally invasive mesh surgery for SUI is apparently so easy a monkey could do it with these nifty mesh kits. Too bad the same monkeys can’t recognize a mesh complication if it hit them over the head with a frying pan and even if they did acknowledge the complications they would stand there scratching their head without the first clue how to get it out.

    In my opinion if you haven’t a clue how to get mesh out you best not be putting it in, it doesn’t seem right that so many are abandoned and dismissed by the very surgeons who placed the mesh and others are left cleaning up after these surgeons while they continue to crank out these procedures while denying their patients ever experience complications.

    • Jane Akre says:

      Have you seen the Youtube videos putting it in? As a blind procedure it looks like the doc is sort of throwing it against the wall to see what sticks. Disregarding the fact that that is a live person who will suffer the consequences of their ignorance IMHO. Frightening …..

  4. EJH says:

    To me, it is outrageous that the mention of emotional trauma and loss of quality of life, permanently, are not mentioned. It does not have to be a large piece of mesh for this to happen. I had SUI mesh that has stopped my life as I knew it. I am unable to do “normal” chores, ie. grocery shopping. Let alone the projects I loved to do. I feel that harm done in this matter, is minimized while a defective dog food would be immediately pulled off the market. How this can keep going on . . . just unthinkable! As for SUI complications easier to take care of – that has not been my experience! I do believe the larger the mesh, the more damage because there is more surface area in contact with the body. The fact that these are permanently implanted with no plan for removal if a problem occurs is very disturbing.

    • Warren Burns says:

      Did you have the mesh removed. And did you recieve disability. I have a friend who lives in constant pain from hernia mesh surgery and cant get anyone to remove it. Need some feed back. Im trying to find him some help.

      • Jane Akre says:

        please reach out to mesh patient Bruce Rosenberg brosenberg1@bellsouth.net. he is able to help with doctor referrals 954-701-5094.

      • Jane Akre says:

        Hi Warren- Check with Bruce Rosenberg brosenberg1@bellsouth.net who is mesh injured himself but has formed nonprofit to help patients. He is very knowledgeable…..

      • Gina says:

        Hi Warren my name is Gina. I had an umbilical hernia that I was unaware of in 2011. My intestine came through and was obstructed. The surgeon put a mesh in me and ive been having probs every since. I was recently diagnosed with herniated disks in lower back though mri. Warren I can barely walk and sometimes I believe its the mesh. My dr says its the disks pressing on nerves. But I used to be an active person and now my life is so totally changed. My legs hurt constantly like a toothache. Sometimes its hard for me to walk. When I bend forward I can barely get up. Im down to 3 days working due to pain. If I shld end up on the ground im done. Idk what to do. The surgeon who did my surgery and implanted mesh left the country the day after. Any advice?

        • Jane Akre says:

          Gina- why not contact Bruce Rosenberg at the Meshoma Foundation 954-701-5094 he is very good at patient advocacy… thank you

        • Karen Getz says:

          Hi Gina, Can’t believe there are so many women out there that are suffering and with so many complications from abdominal mesh surgery. I had my mesh implanted in 3/2008 & all was well until mid 10/2013 when all hell broke loose. All of a sudden I doubled over with severe abdominal & was taken to the small regional hospital. I am still having severe complications & now trying to find a specialist who can remove the mesh & reconstruct. Can you share any information & possibly steer me to some specialists who can talk to me about my problem? I have suffered too long & want to live a painfree life.

          • Jane Akre says:

            Karen- do you know what type you have? hernia or transvaginal or abdominal? prolapse or incontinence?

  5. DJ says:

    That’s just it. They use an instrument to bore BLINDLY through delicate pelvic tissues, loaded with muscles, blood vessels, and NERVES! And then when complications occur, IF they acknowledge them at all, they say they can’t get all of the mesh out because it’s too dangerous! Too many blood vessels and nerves in the area, they say! Yet they don’t know or understand enough about these same nerves to diagnose injuries to them! What?!!?! Then why is it mesh BLINDLY inserted there in the first place? Oh yeah, I forgot…. The FDA’s 510(k) “clearance”, not “approval” process, says that it’s “substantially equivalent” to a mesh product that doesn’t use a “kit”. And, of course, the first mesh was grandfathered in when the 510(k) process started in the 1970’s and the 510(k) has now allowed mesh “kits” on the market w/o any pre marketing clinical trials! To my knowledge, Dr Raz at UCLA is the ONLY surgeon who can and is routinely removing mesh from the very deep pelvis where no one else will go. In and beyond the obturator muscle itself, obturator fossa (bone), pubic bone, and sacral nerve area. Please correct me if anyone knows of another surgeon doing this when needed.

  6. Lisa H says:

    I am new to the group and have had issues within a few months of surgery. With a nerve blocker I seemed to be fine for sometime or I just got used to the pain and then recently the pain has gotten so bad I can hardly tolerate! I have been back and forth between doctors and though they feel it is probably the mesh they want to continue masking with nerve blockers. I am so confused and frustrated! If they leave this in here what is going to happen to me? Financially how can I travel to another state to consult with a doctor and then go back for a surgery and recover to travel back home? If I only knew then what I know now! Just call me lost and confused!

    • Jane Akre says:

      Where do you need to be directed. What state are you in? We have some patient advocates who can help you….Go to the Resources page for their contact info.

      • Lisa H says:

        I am in Missouri. I have seen Dr. Klutke but he did exam said was not errosian, did kidney test and cyst. and told me to have my gyno refer me back when there was nothing more he could do. My gyno has set me back to the original Uro that put the mesh in and when seeing him he was much better with bedside manner than 2-1/2 years ago when I had problems immediately following the surgery. He feels that part of it needs to come out. I am nervous as he is not on any list. I talk to him via phone today with my decision and have a few more questions but my insurance will not allow me to go to California. I believe that I have exhausted all that Missouri and my insurance has to offer me. Now just torn whether I am better off leaving in and living wih the pain or having partially removed and have to deal with the remainder later. I AM SO MAD right now at the manufacturers for putting all of these people at risk I can hardly stand it!

        • Jane Akre says:

          I’m so sorry Lisa… Your story is very similar to others who may not have the insurance to take them to UCLA in California. Check out the Resources list at the bottom of the home page. Some Patient Advocates may be able to provide some guidance as might others who see you comment here if they know what kind of mesh you had implanted. Again, I’m so sorry for your situation.

        • lizzyjune44 says:

          Ucla doesnt work with insurance. You have to get it cleared get it done.its not like going to a regular hospital for the removal. I dont have $30,000 to pay for the surgery or can afford to go out to california without it.why cant ucla help patients with getting the insurance through.?we need help out here.trying to get that done with dealing with the pain is hard enough.help us get there to get help.i have insurance but no one there will talk to them.thats why my insurance dont trust sending me there..to them only reliable doctors have people who do this.so what am I supposed to do?go to another one to Butcher me again?why can’t ucla do this for the victims out here.WHY?!

    • Stacy says:

      I may be two years late responding to this post but pain blocks are the next step for me. Imagine that. I get to travel to another state for pain blocks. I hope they work for at least a little while until I get enough money to go see Dr. Raz for removal or any other doctor that HAS experience. If I don’t die from complications, it will probably be a heart attack because my blood pressure is usually 115/74 AND NOW IT AVERAGES 142/100. I always really liked my doctor until I started having complications for him and he just says none of it is surgery related and is poo pooing all of my symptoms like there is not much if ANY concern.

  7. Amy G says:

    To: Lisa

    I do not want to replace any physician advice- I know many women experience worsening with partial removals. It would appear that women who underwent complete removals ( or as complete as possible) faired better in the long haul. ( I often wished I had erosion so my doctors would acknowledge my pain) Exaggerated scarring is an unappreciated complication the FDA is just now starting to understand in addition to mesh shrinkage that was not previously noted.

    I never underwent a partial removal and had a complete removal- I believe I have had a better outcome. I opted for this after so many women in the chat rooms described an exacerbation of symptoms with partial removals (usually just dissecting the area under the urethra) Maybe Jane could ask for others to post about their symptoms and if they had partial removals if it benefited them as well as collecting info from those who had total removals and how they recovered. It is expensive and the current health care system puts meshies in jeopardy as so few doctors are even willing to acknowledge our problems.’

    Disclaimer; (I am not a medical professional, just a mesh survivor this is not meant to replace your physicians advice)

    Best wishes for a meaningful recovery!

    • Nita Martin says:

      Who did you full mesh removal? What state do you live in? I am in Savannah, GA. Did anyone else have a full mesh removal?

      • Jane Akre says:

        Mesh News Desk has done several profiles of doctors who appear to be experts in their field. Search Twiss and Veronikis and of course Raz.

  8. Wanda P. says:

    I don’t know why you have anything on this website from Dr. Moore. He and is partner, Miklos deny any true issues with mesh. In every article written by them, they say it is never the mesh and only the technique used by OTHER surgeons. I have a friend who used them and when she had complications, severe pain, infection, etc. They told her it was absolutely not the mesh. They don’t mind admitting other surgeons have problems with mesh, but refuse any issues with their own.

    • Jane Akre says:

      Wanda- You make a great point and many people have problems with the Miklos Moore office because they still put in mesh AND take it out. The people here are not being held up as recommendations, but those docs who are seeing a lot of mesh removals, that’s all.

  9. Lisa says:

    My case seems to be as bad as any I have heard. I had a lot of pain after surgury (several trips to ER) and my tt&e genocologist said the erosion of mesh was minor and wasn’t what was causing me pain. She scheduled regular office appointments about every 6 weeks for maybe a year and I could hear her clip (like the sound of toenails) some of the protruding mesh from the walls of my vagina. I finally did a self exam and was horrified. I could actually could feel what felt like 3 small wires protruding from the walls of my vagina! When I pushed the ‘wires’ they would ping back to their original position. I went to a urologist and had another surgury to cut out and remove as much of the mesh as he could. I have been told by two doctors that the only way to try to remove the rest was through an incision across my abdomen (I guess same as C section or tummy tuck?) And even with this major surgery complete removal was probably impossible. I am sexually inactive. I have reconnected with my childhood sweetheart and embarrassed to let relationship move past a few phone calls. My last vaginal examination was the most painful expereince I have ever had (and the doctor was unsympathatic). I have constant pain in my groin, lower back and bladder. I have almost no control of my bladder. Sometimes when voiding the walls of my vagina sting and it feels like urine is coming out my vagina. I also have blood in my stool occasionally. This usually follows a sensation of having my rectum (lower intestines) cut from inside so I can almost always predict. I lost my job several years ago. The only health insurance I can afford has a $10,000 deductible so I can’t always be unning to the doctor, and I’m assuming I can’t sue without a record of my sufferering.

  10. Lisa says:

    Its me again. I guess there is a limit to my ranting and I was cut off. Sorry. But after keeping this bottled up for so long this is cathartic. I have also gotten out of bed on several occasions and experienced what felt like an EXTREMELY painful shot in my lower hip. I am depressed and have become very reclusive. Its hard to be with people or make plans when you never feel good. And now to my initial reason to write on this website; DOES ANYONE KNOW OF A DOCTOR IN HOUSTON I COULD SEE to possibly remove? Thank you for any advise you might give.

    • Gina says:

      Hi Lisa, if you found a dr in houston to remove mesh, Plz plz let me know.

      • Tammie says:

        Gina, I have seen a Dr. Richard Gonzalez here in Houston, I know that he will do removal. But I haven’t gotten that far yet to know how good he is. He does however has great ratings as a super doctor. Going for a cystoscopy in a few days to learn more of my condition. He is injecting me with a steroid for the pain. Hope this helps.

  11. Maria Ordonez says:

    Hi I’ve been suffering with so many symptoms of TV mesh, I had it partially removed in 2009, but symptoms are getting worst, and the fact that it has eroded again, CAN ANYONE TELL ME OF A GOOD UROLOGYST OR SPECIALIST AT REMOVING TV MESH, MINIMALLY INVASIVE WITH GOOD RESULTS IN SOUTHERN CALIFORNIA? I’M IN W COVINA, CA, THANKS!

  12. Pat says:

    Maria, you need to get to Dr. Raz in LA. Has helped many many women with complete mesh removal. Good luck!!!!! From what I hear he is the best!

  13. Concerned Daughter says:

    I was just wondering if anyone had ever tried going to the Mayo Clinic to have their mesh removed. My mom has had a lot of complications and stays sick all the time from the mesh inside her. I started looking into the Mayo Clinic in Jacksonville and thats were I ended up taking my mom to have it out. Mind you we live in Ky. The surgery was performed by Dr. Pettit. He was unable to get all of the mesh out. Now my mom has worse problems then before. It is frustrating because I thought the Mayo Clinic was the top notch. Now we are looking into another surgery to remove what Dr. Pettit couldnt. Im skeptical of any Dr at this point. Ive read so much about Dr. Raz at UCLA and I feel that is who I should take my mom to but the expense would be much. I do not have anyone behind me on this. My dad is against it and blames me for the money they are out by her failed removal at the Mayo Clinic. He says there has to be a Dr closer thats just as good. There could be, but I havent found one yet. He wanted me to look into Vanderbilt but the Dr there did mesh removal surgery on one lady and didnt get it all so she had to go to Dr. Raz. ~ Sarah

    • Becky says:

      Hi my name is Becky I went to Mayo to have an adjustable bladder sling put in by Dr. Petit and I wish I had never had it put in. I got a major infection ended up with three surgeries and a wound vac. No matter how many times I told them I was sick and in pain I was always brushed off I went thru a lot and I could write a book of all the complications I now have rectal pain where they think the mesh is around the rectum and getting more painful each day. Please don’t go back to Mayo in Jacksonville if you need to talk you can email me dbhow@comcast.net anytime. I hope your mother gets well soon

      • Jane Akre says:

        Thank you Becky. My understanding from years ago was that Dr. Daniel Elliott at Mayo in Rochester MN did not use mesh and neither did Mayo system wide… but apparently that has not been the case in Jacksonville. I have heard that from others. I’m sorry …

  14. Carrie says:

    I have a friend you has battled 4 years of pelvic prolapse. She just had the surgical mesh removed…still a tough time for her. Is there a support groups for younger women with this issue? She feels so alone. Traveled to Tampa for her surgery since Naples doctors are only used to treating much older women. How can I help her get good advice…support?

    • Jane Akre says:

      Carrie- If it is alright with you I’ll send you along to a patient advocate for your friend….

      • vickie says:

        Could you sent me a packet too? Is there a Dr. in NC that removes the mesh that is an advocate for women? Can Dr. Raz recommend one?

        • Janet B says:

          Vickie, please join our private facebook support group tvtno.org. There are 550+ women who can help you with your questions – several are from NC and would know about the doctors there. If you can’t find the group, just sent me a fb friend request and I can add you. My fb profile name is Janet Nicholas Beyer.

  15. Carol Jason says:

    HELP. Mesh put in July 2007, Dr said she went to seminars and this IS the best thing with an 18 year track record. I was sick day of surgery, had to go home with bag, kept having major pain, told kidney infections. Thanksgiving morning 2007 admitted to hospital with 104.7 and diagnosis Sebsis. No one could figure out why? Then constant ER admitting pain. I said kidney infection, doctors said no, but treated with pain meds and antibiotics. Doctor called a bunch of doctors and in I go for a snip?? No real explanation, pain, ache everywhere, told I have fibromyalgia. Yet, I do not fit the disease, pain in lower back, hands, feet, shoulders, another surgery for mesh invading vaginal wall and I have another trying to get through! I want the best doctor. How does someone research doctors to have this removed. I sit on lazy boy all day, life is over, gained 100 lbs! I am no longer a mother or wife! Please please someone help me….

  16. Kim says:

    Can anyone recommend a good doctor to remove mesh in Kansas City?

    • Jane Akre says:

      Kim-

      Thanks for writing. As we’ve said so many times, the major problem is the mesh is much easier to put in than to remove. You will likely not find someone who is convenient to you to have a removal. You might find someone to do a partial removal, which, if you read about the experiences of others, often leaves them in worse shape.

      This is a major issue and should be considered by anyone who is thinking of having mesh. Please join our Facebook page and listen to the experiences of mesh removal from others. Many have found that UCLA has the best docs for removal.. yes it is expensive…. yes it is inconvenient…but this is your life.

    • Dear Kim,
      I have had a partial removal of my mesh but am now having more mesh penetrating into my vagina.
      Did you find a doctor in the Kansas City area that you are satisfied with? Please help me.

    • Kerry P says:

      Hi Kim I too live in Kansas City and am finding how difficult it is to find a real doctor that believes I am suffering from this whole mesh ordeal. I had mine installed in Aug of 2009. I went home with a Foley catheter for a week and they took it out and could not pee. So my dr said stop by cvs and buy catheters to do myself. He kept telling me it would take time. It took about 4 weeks around the clock inserting a catheter every couple of hours so they took me back in to surgery and [ released ] what he called the tape. Said it must have slipped upward during the procedure. Since then I have had 5 more procedures and now it is getting worse by the day. Both my hips are affected and the doctors seem afraid to admit or even treat me for this condition. Please let me know how you are doing and if you have had all the mesh removed.

  17. DebC says:

    I am from upstate NY. I searched for a doctor near me who could remove my sling. I was only offered partial removals, & even told it wasn’t possible to remove the whole sling. All my research made me not want a partial removal as I heard so many horror stories of women who had multiple partial removal surgeries & only got worse. I did hear of a couple docs in NYC, & one in MI, a couple in Atlanta that were doing full removals, in addition to Dr Raz & two of his associates @ UCLA. However, they were all at least a days drive from me. I heard Dr. Raz was the best, & only heard good things about him. I decided to go see him for a consult, & then booked surgery. It is in january.

    While traveling to UCLA is certainly not convenient, I decided it was my best option & luckily my health insurance will cover out of state, even CA. It does seem ridiculous that there aren’t good options closer to home, but I’d rather wait & fly to the best, & hopefully get this mesh out in one surgery. All of it. Plus I figured, I’d I have to travel, drive for a day & stay in hotel, I might as well fly for a day & go to the best. This mesh is ruining my life & could effect the rest of my life. With such big stakes, I think it’s worth the effort to go to UCLA if at all possible.

    • P J M says:

      I’m also from upstate NY. I see a lot of good reviews on the removals from Dr. Raz and wondered if things worked out well for you.

  18. Sandra says:

    I just had a full removal. The mesh had grown into my hipbone and was plastered to my bladder. I was in ICU for 3 days to correct blood problems. The pain from surgery beats that I had before with the mesh. Get it out. Driving now. text you shortly Lori fleck in mobile alabama is excellent and caring and doesn’t make you feel like you are crazy. She’s worth the trip from anywhere.

    • Carol k says:

      Could you please give more detail regarding the mesh growing into your hip? I have mesh erosion in 4 different places and have been having terrible pain in my hip all the way down to my feet and wondering if this could also be from the mesh. Thank you

    • Sherry C says:

      Hello Sandra,

      I am scheduled for surgery by Dr Raz in late March. This has been a difficult six month wait. I am scheduled for two days of testing immediately before the surgery. My initial consult with Dr Raz was great. He certainly inspires
      Confidence. After i left LA and returned to Austin, i thought of so many questions i had failed to ask.
      Since you have been through
      The removal already, i am wondering if he does a vaginal or abdominal approach. The mesh is significantly exposed. It has attached to my bladder. Apparently there is also involvement of the pudendal nerve. I have had ongoing leg pain.
      I simply. cannot imagine how he is going to remove all of the TVT SLING and mesh by way of a vaginal approach.
      if you have any Information you can share, i will appreciate it.

      Thank you Sherry

      • Melissa says:

        Sheri, I am also in Austin and am also having sugery with Dr. Raz in July. Can you please keep me updated. I have som many questions.

        • Rebekah says:

          To Melissa and Sherry,

          I am in Houston and have been seeing a urogynecologist who says she can remove 95% of the sling. I am interested in Dr. Raz since he can remove all of it. Please update me on how your procedures go. Also, if you could give me some info about the process. How many visits before surgery, etc? Since it’s a ways to travel, it’s nice to have an idea of how things go.

          Thanks,
          Rebekah

    • Joan says:

      Thanks Sandra, after years of complications fevers, infections, swelling in the groin as if something bulging trying to get out, shots of Rocephin, inability to tolerate pain from insertion of speculum for pap smear, let alone SEX, defecating pain and tearing feeling, repeat bladder infections, so tight Urologist said he did not know how I could even urinate upon Cystoscoping me, that’s what sling was inserted in 1987 for after miscarrying due to PID following two weeks in Cardiac intensive care for SBE. My connective structures were so infected they couldn’t support organs so the sling and mesh were used without permission while I was under anesthesia. Hope she can help me, at my wits end, ready to get mesh and sling out! Thanks for your posting.

  19. sal says:

    what is the correct phone number to get in touch with these surgeons?

  20. connie gayer says:

    Hello i am in Arkansas and need a surgery for full removal. I am terrified to have this done. Has anyone went to Dr. Miklo’s and Moore in Alanta Georgia?That’s who i have been thinking about going to. If so i would like to hear form you. My Email is connie.gayer@yahoo.com. Thank you.

  21. Maisie says:

    Does anyone know of surgeons in the PA, NJ area that does mid urethral sling removals? It is a Boston Scientific Obtryx.

    • Jane Akre says:

      Maisie- Thanks for writing. We repeatedly find that there are so few doctors who can do an explant procedure when compared to the implant surgeons. I hope you get an answer. Look at Hope Pagano’s story in that she is NY based.

  22. […] MDND’s article, “Get the Mesh Out! Doctors React to Patients Following FDA’s July Warning about Surgical […]

  23. Esmie Cantu says:

    I had mesh with cystocele, rectocele and monarch for bladder leakage two yrs. ago. I am having major pain on my right groin and hurts upon walking. I also have severe abdominal pain and suffer from severe constipation since surgery. I’ve had CT scan of abdomen, x-rays, colonoscopy, but the pain continues on my left lower quadrant, groin and leg. I need to see a urogynocologist in Texas. I can’t afford to go out of state as I am unemployed. Please help!

  24. Jill says:

    Dr Norton (Utah),
    Do you remove mesh used in umbilical hernia repairs as well? I had Ventralex Mesh used on my Umbilical Hernia in May 2010 (at Jordan Valley Medical Center).

  25. Linda says:

    I need a doctor in Murfreesboro Tn.

    • Kathy says:

      Linda, do you find a doctor close to you? I’m in Nashville and need the name and number if you did.

      Thanks!

  26. Susan says:

    Is there a doctor in the North Carolina or Atlanta area that is an expert on Mesh erosion? Had vaginal prolapse surgery in Oct 2008. Mesh has eroded into intestines as seen in colonoscopy.

    • Jane Akre says:

      As is often said Susan, seek out the best medical advice not the closest… pose your question to this site’s Facebook page and you will get a lot of answers from people who have been there. good luck and stay in touch..jane a.

    • vickie says:

      Did you find someone in NC

  27. Mary Pat says:

    Dear Jane and Mesh Sisters,

    Dr. Una Lee at Virginia Mason Urology in Seattle, Washington, can remove mesh. Dr. Una Lee trained under Dr. Raz at UCLA for several years. Dr. Coy at Virginia Mason Radiology can perform the translabial ultrasound. Dr. Lee does not implant mesh although most of the other urology doctors at Virginia Mason do implant mesh. Jane, maybe you could do a feature article on Dr. Una Lee so other mesh victims will know that there is a good surgeon, trained by Dr. Raz, in the northwest. Seattle is close to Canada and it is a major hub for airlines (cheaper flights) so maybe the Canadian women can either drive or fly to Seattle for their mesh removal surgeries.

    • S. Thorne says:

      I had mesh implanted in 2007. I am 76 now. Had so problems for several years but tolerated the following: 1. Always felt like I had to go pee. 2. Caused difficulty moving the bowel. Then I developed vaginal inflamation and sought help with the doctor who did the implant for several months, until finally he said he didn’t know what to do for me and referred me to Dr Baggish in St. Helena, CA. Meanwhile I consulted with another woman doctor who diagnosed shingles. That wasn’t true. Then I saw Baggish who diagnosed Vulvar Vestibulitis, and performed a vesti bulectomy, August 2012. Very painful surgery with months of recovery. I continue to have inflammation in outer area and using a multitude of ointments twice a day. Get injections since he said I have atrophy. Recently, I have felt toxic, itching all over my body, pain in groin, and especially where scar is left from a hysterectomy I had at age 40. It’s 9/8/2013 and I now feel like I have to have a bowel movement all the time, and have groin pain. Recently, I broke out with inflammation above pelvis bone on outer skin, and in both sides of groin and under both breasts. Doctor said it was candida caused from sweating and hot weather. More ointment given. I am sure that I am having all my problems from the mesh. I am looking for a professiona ldoctor who is trained in the removal of mesh. I live in Lake County north of San Francisco. Does anyone know of a good doctor? My email donsharo@sbcglobal.net

  28. Kathleen says:

    anyone recommend a doctor in central iowa or close by-ended up with a large hematoma from hip to hip after the tvt surgery-it lasted 10 months-also blood transfusion,have had a lot of problems but since that surgery doctors say I am high risk and won’t touch me.

  29. fawn says:

    I have several of these symptoms ive read about here..1999 i had a total hysterectomy and dr. Said i had lots of adhesions from previous surgery.. right ovary removed.. he told me he used mesh to stop the adhesions… he later was being sued by several women for botched surgeries.. he left town. I dont know where my records are but post op says nothing of using mesh..im in constant pain but dont know how to find out if i have mesh implant.. any help? Ive had lots of test ruling out cancer,crones ect. Im being advised to do surgery if i want relief..im willing to go anywhere and have good insurance. Im from Ar. Any suggestions?
    Thanks

    • Jane Akre says:

      Fawn- Who paid for your surgery? Insurance? Likely they have records of what they paid for… the hospital should too. A good law firm will advise you on how to proceed. Many women have pursued removal surgeries with some success. Many post here and on the Facebook page. Please stay in touch and post a question- I’m sure you will get lots of answers…. Best of luck in your journal. ja

  30. Amy Nesb says:

    Has anyone experienced piriformis syndrome after partial excision of tvmesh? I had about 75% removed a few weeks ago and now I can’t walk or sit for a moderate period of time? The anchors/arms of the tvm is what is left in my body. This was the sixth surgery including the original placement of the mesh in 2005 during hysterectomy. My uro only removed what he could get too vaginally and suggests that my new pain is back related. I don’t think so. Could it be adhesions or scar tissue? Or could it be the mesh anchors/arms themselves? Is there any form of relief for this pain? Please help. I’m an accountant and a widow. If I don’t work…I don’t get paid. I’m very depressed. I am also very active and this pain inhibits me from doing the things in life that support my family and give quality to it. :(

    • Karin says:

      I too have had lower back pain since my 2007 implant. I had Gynecare sling mesh removal surgery in 2010… didn’t help back pain much, but DID help the painful bladder spasms and incontinence (although now with another erosion and recurrence of prolapse that is back… ugh).

      But when I had Gynecare Proflift mesh removal in 4/2012, it DID improve my back pain. It has never gone away, but prior to that surgery I was unable to sit, stand or walk for more than 15 minutes without extreme pain, sometimes, less time. And some days, it hit Level ten and I tried TENS unit, physical therapy, narcotic pain medication… it was HORRIBLE. But after that mesh removal, it was much better. The amount of time I would sit/stand/walk was increased before pain would set in and the level 10, weeks in bed in unbearable pain were much less frequent.

      With this new erosion, much of the that pain, as well as vaginal, left hip ad pelvic pain, bladder, rectal pain have worsened again. But I am scheduled for another mesh removal surgery and am hopeful for the same result…. LESS back pain and less pain overall.

      So I truly DO believe your pain could be due to the mesh. And also the scar tissue. I was told I had so much scar tissue in my vagina at this point that they can no longer go in vaginally and they have to do it abdominally. But regardless, the pain is definitely related.

      I especially noticed this with I went through some vaginal “Occupational Therapy” to help relieve pain and hopefully allow me to finally resume intercourse with my husband. It did NOT help… actually aggravated the pain. But the weirdest thing happened that made me certain not just my back, but also my hip pain was related. During the physical therapy (they press on certain spot in your vagina), my vagina would spasm and contract/restrict all on it’s own and I would have subsequent vaginal pain… but ALSO referred pain in my back, rectum and hips and other areas of my pelvis. So it became pretty clear that the other pains that weren’t IN the vagina itself were defintely related to mesh or scar tissue and also that mesh removal may help relieve some of that.

      I would suggest getting to a good urogynecologist that specialiizes in mesh removal as soon as possible. Hang in there honey! We are all rooting for you!

  31. Christine says:

    My M.S wouldn’t had let me take out the mesh sooner because my M.S has been active. Finally I get it out, but only half the entire mesh cannot be removed. :( what now? another surgery, that will just cause an M.S Attack “Again”. Double pain…Double pain…My M.S. was the reason because I had stress urinary incontinence, Gee I got the Mesh for nothing cause there is no cure for MS! and now the mesh problems. Lets put the M.S problems away and add my new added problems. Boy forget about having a normal life. I cant and wont make love to my fiancé. Infections,pain and bladder leakage, etc. Suffering silently for a long time, I’m smiling in the outside but dying with pain in the inside. Yes I do feel I was misdiagnose when I had the Mesh surgery and Yes I know the Mesh has caused me more problems causes far more complications in my life! And I’m a mother and Oh I’m only 35 years old. Jesus help me get threw this mess and everyone else who is going threw it with me. God Bless You all

    • Jane Akre says:

      Christine- I’m so sorry. Please visit the Facebook page and ask some questions… you will get a lot of answers from people who have been there and may find a medical solution to your problem.

  32. frances stockton says:

    i have had a mesh inplaced using the da vinci in feb., of 2012 an since march of 2013 , i have had a prolapse of bladder, rectum, mesh erosion an numerous doctors misdiagnoisis..now I am in severe pain, abdominal, vaginally, low-back, rectum I feel as if i am drowning inside. It would be the right thing for a doctor to be honest an tell me the truth, an get a referral for mayo in rochester i was told by the mayo in arizona as well asw my family doctor who for some reason or another chooses to ignore me ? I say there all gfuilty of deception, murder !

    • Jane Akre says:

      Frances- does that mean the daVinci implanted mesh abdominally? Often doctors just don’t know what to say so they say nothing according to doctors in the know. It is really not acceptable behavior.. If you don’t know- educate yourself in my opinion!! See the Dr. Twiss article about patient abandonment. I will write you privately… thank you! ~ ja

  33. g guest says:

    Something needs to be done the way doctors are treating patients with mesh, It is bad enough to go through the pain at times that was implanted in front and back , and suffer these infections from this mesh, but for doctors to lie, and so many told we were crazy, no mesh protruding , and then see where they say these things in report, and then read where they admit the mesh and how much is protruding out. it is enough to cause stroke and more having to deal with lies and even severe pain they put you through.
    It will not do any good to write the board of medical ,in states , they like the doctors cover for their colleagues, what is the matter with medical ???

    why aren’t criminal charges filed? governors over state should do something, this year the governor in this state said words , we have to protect our medical people. The women with mesh need some protection from doctors lying for their colleagues.

  34. Willie says:

    I was told 48 hrs prior to having surgery that I needed to have surgery for an “Umbilical Hernia, and so I went in and they put into my stomach a type call”Propalene Mesh” and for 8 yrs I was at 206 pounds, and I also had Chronic Pain, Neuropathy, Blown out disc, that included Lumbar, thorasic and cervical which I wore a neck collar for 9 months, 24/7.
    The night that I had the surgery, my wife tried to call the Doctor, but he couldn’t come to the phone since he was at a party bringing in the New Year and the blood was coming out of the belly button area so fast, there was blood all over me and the bed and sheets.
    Thank God that he sent me a Trusting ,knowledgable wife, or I would be DEAD. The Bastard I never heard from for wks, and my wife did all of the cleaning of bandages and had to buy a type of plastic that they put over Duragesic Patches.
    I was in Gods hands and my wife’s.
    I had her take photo’s until the battery went dead in the camera and she went out for another one.
    I will say that after 3 months after I had seen him, he said that I would never have another surgery again(LIAR).
    So, for 9 months I was at 206 pounds and then for no reason I was dropping down to 171 pounds and had to go back for another

  35. Willie says:

    I was told 48 hrs prior to having surgery that I needed to have surgery for an “Umbilical Hernia, and so I went in and they put into my stomach a type call”Propalene Mesh” and for 8 yrs I was at 206 pounds, and I also had Chronic Pain, Neuropathy, Blown out disc, that included Lumbar, thorasic and cervical which I wore a neck collar for 9 months, 24/7.
    The night that I had the surgery, my wife tried to call the Doctor, but he couldn’t come to the phone since he was at a party bringing in the New Year and the blood was coming out of the belly button area so fast, there was blood all over me and the bed and sheets.
    Thank God that he sent me a Trusting ,knowledgable wife, or I would be DEAD. The Bastard I never heard from for wks, and my wife did all of the cleaning of bandages and had to buy a type of plastic that they put over Duragesic Patches.
    I was in Gods hands and my wife’s.
    I had her take photo’s until the battery went dead in the camera and she went out for another one.
    I will say that after 3 months after I had seen him, he said that I would never have another surgery again(LIAR).
    So, for 9 months I was at 206 pounds and then for no reason I was dropping down to 171 pounds and had to go back for another surgery.
    I now have TVT MESH and need help since I am on Generic meds and it is effecting my stomach and my head. I hope that there is someone out there that can help me, please.
    God Bless to all of us who are suffering
    Merry Christmas

    • Jane Akre says:

      Hi willie-

      I’m a little confused by your message,, you said you have hernia mesh but then you said you have TVT mesh… that’s transvaginal tape for women! Maybe you mean its made of the same material that is polypropylene. Regardless, for the hernia mesh situation please contact Bruce Rosenberg at brosenberg1@bellsouth.net. He is mesh injured himself and a great resource for the next medical step to take. I know he will ask you if you have your medical records and have insurance. Just for general knowledge many surgeons will not work on you if you are a smoker so that puts you at an extreme disadvantage. Bruce can also be reached at 954-701-5094. Good luck and please stay in touch… there is much you can do to advocate for yourself!

  36. Chandi says:

    I need help, I had my miniarc sling put in last year, had many problems, was told by the doctor he didn’t make mistakes, and was promptly dismissed as a patient, time went on, always a tight pulling sensation, and pain…. But a few months ago, I bagan to have severe right leg pain… To the point of using a cane to walk, I am 43, and my life is altered forever…. No doctor will begin to listen to me when I say it’s the arm of the sling, I am unable to move my right leg, I have to move it with my hand, I’m so sad…

  37. Jessica says:

    Hello ladies, my name is Jessica and I am a lawsuit-loan/cash advance manager. As a woman, I have made it my mission to reach out to other women in need of help, who are suffering from situations such as these. If you are involved in a lawsuit due to mesh erosion, faulty IUD’s, or any other reason, and are in need of a cash advance, I’m here to help. My company is Pre-SettlementFunding.com, again my name is Jessica and you can reach me at 718-902-0256. Please don’t hesitate to contact me, even if only to ask questions regarding lawsuit loans.

  38. kim says:

    How long has surgical mesh been used? How do you know if the doctor used it? Is it used for other surgeries like bladder repair?

    • Jane Akre says:

      Hi Kim- Mesh has been around since the 70s mostly used for suture repair. The difference is when it was fashioned into mesh for pelvic organ prolapse or to hold up a bladder/urethra, much more mesh is used. That happened beginning in the late 90’s 97 and 98 for the TVT. Often industry says “mesh has been around for 40 years and safely used” but comparing the quantities used for the different applications is like comparing apples to oranges- there is NO comparison. Kim- you must obtain your medical records. They belong to you and you should have no problem insisting you receive ALL of your records including nurses notes and insurance records. That is often how people find out they have been recipient of mesh. so much for informed consent!

  39. Pearl says:

    Hello ladies, I have been reading all of the comments from you who have had the mesh implanted over the past couple of years and it terrifies me to know that I am a part of something this serious and that the medical providers are taking this so lightly…. I too like others are having a difficult time with finding a provider who is willing to take this thing out. The two so called experts in my area are both saying that they do not see any problems with my device. I am contending that it is inevitiable that I will encounter more serious issues down the road. I have been experiencing pain amongst other problems on my lower right side since the sling was put in December 2012 and it is getting worse. One medical provider said that it is the muscle and the team that I saw on Friday, May 2, 2014 said that it is the nerve and prescribed me medication ($285.00 for a 30 day supply along with sleep medicine) and wants me to return in a few weeks for an injection in the nerve. This is unbelievable, I am extremely upset and confused as to which way to go. I feel that the providers are sticking together on this so that they will not be liable. I am seeking a provider who will take this mess out of me. Thanks for the info on Dr. Lee in Seattle I will try and contact her office today. My family who lives in the Seattle area is in the process of making arrangements for me to come there for the reversal surgery since the doctors here in NC are hesitant to remove it. It is extremely frustrating to know that we have to go to this extent to have a this device removed and I appreciate the comments that are out there, this gives me an idea of what others are going through and a little more information for rebuttle when I am dealing with the medical providers when I don’t feel like I’m getting the whole story on this pevlic mesh. This is costing all of us time, money and possibly job losses. I appreciate any feedback from anyone specifically in the Durham NC area to compare what the providers here are saying.

  40. cathy says:

    Hello to everyone! I would like to ask if anyone knows of a Dr. in Colorado that does the mesh removal? I’m desperate! I have two,one for hernia repair and the other one is a transvaginal taping which is attached to my spine. I can stand the pain!

    • cathy says:

      continued…I can’t stand the pain! If anyone could point me in the right direction of a Dr. close to Colorado I sure would appreciate it. I had revision surgery on the 2nd of July, the mesh was too tight . I had problems urinating and emptying my bladder. The Dr. had to go back in and cut the mesh, to loosen it. I’m now on the third bladder infection since this surgery, taking yet another antibiotic….I need help!

      • Jane Akre says:

        Cathy- I wish it was more convenient…. I will post your question in the Facebook page to see if there are any responses. You may have to travel though….

  41. Jan S says:

    Does anyone know about the following doctor in St. Louis regarding removing TVT for SUI? Want a complete full removal and not a partial. Thanks!
    Dionysios K. Veronikis, MD
    St. Louis

  42. Alina K says:

    Hi ladies!

    First of all, I am so sorry to see so many of you have had such a nightmare with the mesh implant! I am writing because my mother got diagnosed with advanced prolapsed bladder and we are trying to decided on what would the best procedure for it. I clearly see that permanent mesh is something we want to stay away from but I have read the other option would be having a repair surgery which means stitching the bladder back into place as well as stitching the tissue to help support it. Have any of you tried this prior? or after? Has that not worked and that’s why you went with the permanent mesh? For the once that took the mesh out, what did you end up doing to fix it afterwords, once the mesh was out? I need some help since it seems that making the wrong choice can have terrible outcome. We are in LA unfortunately my mother’s insurance does not cover DR Raz, who seems to be the best at this, and even though we wanted to pay cash for at least a consultation with him to give us the best solution and maybe a referral to another good surgeon and pay cash, he is so over booked that the first date he could see her would be end of November. Her prolapsed bladder is very advance and she can’t wait that long, need attention ASAP.

    I appreciate all the advise you can give me!!!

    Thank you and again sooo sorry for all the problems you’ve been through!

    • Jane Akre says:

      Alina- you are a good daughter… while mesh works from some, there is no way of know which women will have a disastrous outcome. Some of it is doctor skill, apparently a lot of it is the polypropylene mesh itself. The conservative approach (I’m not a doctor) is to harvest fascia and create a sling out of her own tissue or to do a burch procedure of sacrocolpopexy. Fortunately there are alternatives for many women. If your chosen doctor does not know how to do these procedures (burch, sacro, fascia) you might want to seek out a more skilled surgeon, usually a urogynecologist or a female pelvic surgeon who can offer you more options. This is what I”m understanding from talking to the most highly trained doctors…. good luck..and thank you for advocating for your mother.

      • Alina K says:

        Thank you Jane for your reply! You’ve given me some good information on other option if stitching would be the enough for her! I appreciate the time to reply! Obviously I am trying to do find what is best for her, she is my mother and as I grew up she always done the same for me, is just time for me to help her now that she’s 73 :) and I’ll never be able to pay her back for everything she’s done for me, she’s been the best mom anyone could ask for.
        I was also interested in seeing what did Dr. Raz do for any of the women that went to him to remove the permanent mesh after he removed it. I am still trying to see if I can get her in for an appointment with him sooner.

        Thank you!

        • Jane Akre says:

          Alina- Tell me again where you are located. I might be able to direct you to docs in your area who are proficient… just based on the recommendations of others. I have no personal experience. ~ ja

  43. Karen says:

    I’m in so much pain from my mesh implant for incontinence. I had this done in 2008 and I’m now on 2 antibotics twice a day and always pain in my abdomin, my left leg, and my rectum has a dull ache . I’m depressed and miss work from this. I have tried to back off meds and go to 1 pill a day but in a matter of couple of days I can feel the infection coming back. I’m sick on my stomach everyday and cannot lean on anything w/o pain. There many other complications I don’t want to share that are personal. I went to Dr. Chris Walker in Orlando and was set to remove the mesh and they wanted me to go to a finance company to pay for the removal of the mesh. I have insurance, but they would not accept my insurance. When I pushed for an answer, they said I’m in litigation and if I lose then my insurance company could pull back the funds already paid to the doctor. I contacted my insurance and they advised, no, if I’m having medical issues w/ the mesh then they will not pull back the funds from the doctor at a later date. When I advised Dr. Walker’s assistance I would rather use my insurance, they adv I have to go through the finance company if I wanted to have the surgery. I backed out of the surgery, I can’t see paying a finace company to pay for the surgery when I have INSURANCE I pay for monthly. I’m in constanct pain and no one wants to help me. I guess when I die from this, this is the only way I will be out of constanct pain and maybe then someone in the medical field will listen. I hope any woman considering having a mesh implant, please stop & don’t let these Dr’s put this garbage in you . I cannot believe the FDA has not recalled this. I have been to so many urologist and they say, “It’s not the mesh” and then run a lot of test I don’t need. I hope there is a Dr. out there, hopefully, I will find and they will remove this poison inside of me.

    • Alina K says:

      Hi Karen,

      so sorry to hear about your issues like many others here. It seems the best doctor that can remove the mesh 100% is Dr. Shlomo Raz in Los Angeles. I don’t know if your insurance will cover him but look him up. Good luck!

  44. Jeanne says:

    Jane I could use some recommendations do any ladies who have posted experience with Dr Veronikis in MO ? I am in the Chicago area Any drs more locally that are of help with this TVT fiasco? I am so confused and so utterly betrayed I had minimal leakage but my dr asked about this in prep for hysterectomy in 04 I had the urodynamics test and a urogyn put in the TVT I had no idea what this could mean for me now I can’t get medical records to even see what is in me as over 10 yrs If I had known before Feb of this yr, I would have that!
    I have had urine retention for yrs and this dr told me it was not related to the sling I can feel the pricking of the mesh with my finger in the vagina Dr Veronikis called me personally and mentioned clipping this back and fixing the tissue to mend over it He said that using estrogen cream will not fix the problem and the sling is put in wrong -too tight He said maybe trimming this will be enough to help the bladder I am really worried as I also had stitches bleed and some granulation 4 yrs ago Dr V said that this was the first indication of erosion NO dr here has called it that They told me to use estrogen cream but NEVER explained why… maybe this would not have started to erode if explained about the vaginal wall thinning 2 yrs ago the dr mentioned this and never gave me a script so I let it go I have no idea what to do I don’t have pain YET When I had the stitches repaired I did have spotting and some discharge then I don’t know what I should do and so afraid I can give myself a lifetime of pain doing something or not doing something doing partial or doing full removal I don’t even know if I will have a bladder that will function after all these yrs I am so upset as did not need this sling I remember looking online about them but I don’t know if women were having huge problems with them back then I don’t even remember the dr telling me there could be complications I hate to go to MO for this but I can’t see letting anyone touch this but someone with experience I am a bit surprised this dr did not talk full removal I already have a deteriorating back and idiopathic neuropathy I don’t know why now I have to have another condition that can give me pain. I will have it from head to toe Why or Why did I not think putting something like this in me was not really necessary or a bad idea. So much stress worry and fatigue Thanks
    by the way does what happens if Raz takes out the sling and there is no bladder function and you live miles away does he do that fascia surgery at the same time ?

    • Jane Akre says:

      Dr. Bruce Rosenzweig at Rush Medical Center, Chicago, for an expert for the plaintiff in the recent trial in WV.

  45. Lisa Reed says:

    I really hope I can find someone who can help me March of 2010 I had a incarcerated ventral hernia in the subxiphoid region fixed with a 6×8 Sepramesh. Immediately I started having problems first thing was I couldnt eat eggs anymore of all things 4 days after surgery just one bite of scrambled eggs doubled me over in so much pain it was like a severe gall bladder attack the nasty bile and the acid burning feeling and I felt it work its way all the way thru my body very painful. i even asked if i was having an allergic reaction to the mesh and was told no. From then on I suffered from severe constipation always passing watery stools once i broke loose nothing i repeat nothing helped me get relief and the pain so bad I have to have a bag to puke in while trying to go to the bathroom I’ve had numerous testing done 6 colonoscopys in one yr I’ve had upper scopes and other testing done to rule out chromes to cancer, I’m been treated for IBS, diverticulitis and belly full of bleeding ulcers at one point i got so mad because i knew something wasn’t right and my gastroligist kept telling me I was too young fed up and life getting more complicated I put myself on the back burner and dealt with my sickness because my mother was dying and needed me. Well I got worse bout every other wk sometimes once a wk these flu like systems i was having got worse bad sweats chills puking nasea chest pains constipation then watery stools accompany with severe pain until i finally went to the bathroom. My mom passed and I got even worse I have lost over 60 lbs the pain is so bad when i eat my belly swells I feel like theres a fist being shoved into my sternum the pressure in my ribs chest and back I can’t breath which triggers panic attacks. About a month in a half ago I had an attack that was so bad I ended up in the hospital for 3 days had another colonoscopy because my ct showed a mass on my small bowel but i was told out of all those colonoscopys they never been able to get me clean out good enough to see my small bowel that didn’t surprise me what surprised was this whole time they had me scared to death thinking cancer and never bothered to tell me they couldn’t see all my colon, they couldn’t tell me what was wrong I was mad at this point and asked them why they feel like they have too keep looking up my arsh when obviously its got to be something else, well they sent me home and a week later did exploratory laporscopic surgery.
    There finding was and I quote a whole bunch of scar tissue on that mesh I was told he pulled it down cleaned up the scar tissue and put it back, he said that scar tissue shrinks and can cause sever pain if it gets twisted around your bowels, well for two wks the pain was gone I was fine with him putting the blame on just the scar tissue, the day before i had just started eating more of a solid food i had a sandwich instead of mashed potatoes or soup the day after my sweats and chills started along with my stomach swelling up the pain is back but its different as long as im sitting still and not eating i’m fine as soon as i move around or eat it hurts it starts the chills sweats vomiting, I can’t even hold my grand daughter for very long before I’am in so much pain in my back and ribs i’m in tears. I ended up back in the ER and was told I need to see a GI doctor and start being treated for chronic pain and from too many surgery’s and go on a blend diet. once again I ask about the mesh and all I got is a attitude. I m sick and I cannot function like this Iam only 46 years old there is no other explanation for what i’am going through other then what i have been reading online about the mesh please I’am willing to do what I have to do to get this out of me I WANT MY LIFE BACK, this is not stress or in my head and i’am tired of being treated like such. please I live in Louisville Kentucky is there anyone close that will hear me out look over all my medical records there’s so much more, I’am so depressed I don’t even want to go on living anymore………….

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