Deb C Suffering: Stress Incontinence Mesh Injuring Women Too

Oct 10th, 2012 | By | Category: Patient Profiles

Deb Contestabile

 February 3, 2012.

That was the day that Deb Contestabile says her health took a downturn from which she has still not recovered.

The 46-year-old mother of two boys led a predictable and comfortable life with her husband of almost 22 years who owns a machine shop.

They have busy lives with the two boys in sports and her full-time job as an administrative assistant at the University of Rochester in Rochester, New York. Deb was about to transfer to another department and thought, why not take time first to fix this small, inconvenient problem of incontinence. She believed it would be minor surgery to treat a “somewhat embarrassing problem,” and besides, Deb’s friend had had the same procedure six months earlier and raved about no longer having to wear pads or worry about sneezing.

Deb wanted to start the new job free and clear of the problem and not need to take time off once in her new position.

She went to the same urologist as her friend.

“I had never gone to him before. He was abrupt with zero communication, like he was in a big hurry, he came in and left. I didn’t worry about that because my friend recommended him” she says.

Was she told about complications? In other words, fully informed so she could give her consent to the surgery?

“I didn’t research a lot which is not like me. I normally research and am skeptical, but I thought this was just minor so I didn’t really think too much about it. He gave me a pamphlet which didn’t say much.  He seemed more concerned that my insurance would qualify me to have it.”

The urologist told Deb the time off would depend since everyone is different. The surgery was scheduled for a Friday and she would go home the same day with a catheter which would allow her to empty her bladder through a tube.  She’d come back Saturday to have the catheter removed.

With those assurances, Deb didn’t even take Monday off in preparation for the surgery.

“After the surgery, I found out I shouldn’t be driving for two weeks. The pre-surgery prep at the hospital just seemed like a lot of paperwork, talking about the hospital and where to go. I knew any surgery has risks, but I had no idea how serious mesh complications could be, how common they were, or how difficult they were to fix.”

“I thought, if there was a problem, they’re going to fix it.”

Deb C. and her husband, Kevin

Surgery

So on February 3 of this year, Deb Contestabile had the American Medical Systems, Monarc TOT, transobturator tape (TOT) sling implanted to support the urethra. Using three small incisions, called “minimally invasive” the synthetic polypropylene mesh is pulled into place through two groin incisions, the obturator membrane and around the ischiopubic ramus region.

The procedure is said to be safer than a “blind” needle passage and does not have to pass through the abdominal wall like traditional slings.  AMS has more on the mesh on its website (here).

Transobturator surgery, Miklos and Moore

YouTube has a video of the procedure * Warning very disturbing images (here).

Here is a animation from AMS *Warning disturbing images (here) .

She says it’s been all downhill since.

 

AFTER SURGERY

“I had problems right away. I felt terrible that night. I was so sore I could hardly move, I was bleeding bad. I called my friend that evening and asked her, ‘Were you like this? I can’t move?”  Then I called the surgeon’s after hours emergency care.  An on-call doctor returned my call and told me I was okay to wait until my appointment the next day to be seen.”

Deb was scheduled to come in Saturday morning to have the catheter removed, but when she got there, the clinic was closed.

“I was hobbling around with my catheter and the clinic was closed! I’m in pain right? There was a gentleman there also waiting and I’m on my cell phone calling the after hours care again, what the heck?”

Eventually a nurse showed up, apologizing profusely. She removed the catheter from Deb and told her, “You’re fine.”  Still, no doctor showed up. Deb was told everybody is different and if the bleeding gets worse, call the doctor.

A friend drove Deb to and from work for a couple of weeks and Deb says she felt the stitches. She was still in a lot of pain and thought “Maybe I’m just taking longer to heal.”  Two weeks after her surgery during the follow up she told the surgeon she could still feel the stitches and was in a lot of pain.

Deb and Cleo

“He didn’t even examine me. I asked him what happened on my appointment the day after my surgery when the office was closed.  He acted as if he didn’t know anything. I was concerned by the amount of   pain and how hard it was to walk but he assured me everybody is different. “Give it time”, he said, and quickly ended the appointment.  I called my friend right after, ‘did he examine you?’  I was dumbfounded. I couldn’t believe it.”

Deb was now hobbling around with pain in the groin, left leg and hip area. It grew worse and worse until she felt her leg giving out.

“I started getting shooting pain in my left groin/leg whenever I walked any distance.  The pain stems from what I now know is my obturator muscle area, and then sort of goes out and down my leg.  That same pain just kept getting worse.  I started limping more and more, and by July it got so bad I was using a cane or a crutch.”

Today she can’t walk without using a crutch and regular pain medication.

At work, Deb attempted to hide the fact she felt sharp pain, but the limp was harder to hide. Thinking she might need to get in better shape she tried to walk during her lunch hour, but this just increased her pain and soon any distance at all was impossible.

A visit to her regular doctor at the end of April yielded no answers. She was told she might have bursitis and given anti-inflammatory medication.  Then, at her second follow-up with the urologist in May she pointed to the area where she was experiencing pain. That couldn’t be linked to the sling surgery, she was told.

But that was not enough of an answer for Deb. This pain didn’t just coincidentally start after her mesh surgery.


ROUND OF DOCTORS

By April Deb found herself on the circuit of doctor visits that so many mesh women experience trying to find out why she felt so bad. She visited the original surgeon in May for her second follow-up, and told him she was limping. By this time the internet had yielded some suggestions she might not be fine and that her sudden onset of symptoms since the mesh surgery might be related.

“He immediately said it’s not from the surgery. ‘Everything we did is over here in the abdomen’ he pointed, ‘you wouldn’t be having pain in the leg or hip area’. I said, ‘yeah, but it hurts right here’, pointing to what I know now is the obturator muscle, and said ‘the pain starts here then shoots out and down my leg’. He still looked me in the eye and said, ‘That’s not related’ and told me I should go to a chiropractor,” Deb says today.

Still, she received no internal exam in fact, the surgeon never examined her after his surgery. Later his notes would say she complained of pain “far away from the incision area” and she had no vaginal pain.

Her primary doctor gave her anti-inflammatory drugs and told her to go to an orthopedic doctor, who said she had a mild hip dysplasia in her left hip. All the pain was from that and not the mesh she was told. She had x-rays, an MRI done, received a cortisone hip injection and was referred to another orthopedic specialist. She was too young for a hip replacement but she might be a candidate for a hip osteotomy where bone is cut to change its alignment before it’s put back in the pelvic area. This is major and rare surgery with a long recovery time. She would have to drive or fly to a special clinic in Boston that specialized in that type of surgery.

“They were more willing to discuss that than mesh removal,” said Deb who still suspected her shooting pain must be mesh-related.

Finally, the first confirmation came from a Rochester area urogynecologist that Deb sought out independently and waited months to see. This doctor suggested her pain could be mesh-related, though she’d never seen that complication before. “You’re the first one,” she was told, as so many mesh-injured women hear. The doctor didn’t blame Deb for wanting it out and told her a partial removal might be possible but a total removal wasn’t possible.

Deb and family

Deb’s online reading told her partial removals often left more women in excruciating pain and in need of additional surgeries.  Research yielded more information. The transobturator tape had been known to pinch the obturator nerve and cause groin and leg pain. She watched a video of surgeons doing a Monarc Sling surgery and saw the kit they used. They take a steel hook through the obturator muscle.

“Once I saw that, I thought how could he look me in the eye and say that is not related?” Deb says. Her next move was to call the clinic of Dr. Shlomo Raz at UCLA, hoping for a cancellation appointment. Regarded as the premier mesh removal doctor in the world who sees hundreds of women every month who fly into the clinic from around the world to have their vaginal mesh removed, Deb kept calling and finally got an opening in August.

His comfortable manner made her feel she made the right decision. The Monarc Sling is known to cause the kind of pain you’re describing, she was told. His exam revealed that part of the mesh was thicker than 1 centimeter so it may have bunched up or was shrinking and jabbing her obturator muscle causing spasms. His opinion was to have the entire sling removed, not a partial removal. She might experience an 80 percent chance of recovery and her incontinence may not come back if the urethra stays in place.  If it does come back, he told her she could come back in a few months and they could make another sling using her own tissue – no mesh.

“He seemed to know exactly what I was talking out,” she told MDND. Finally some good news; the bad news –Dr. Raz is so booked up, he couldn’t operate until January.

Insurance will cover the operation, but not the travel and hotel.

“Every day I wonder how I’m going to make it until January,” Deb says but she adds she is one of the lucky ones, not only to have insurance, but a supportive husband and two kids who can do a lot for themselves.

“I can’t keep up with anything -work, laundry, dinner, anything. The other day my 15-year-old forgot his homework and called me to ask if I could bring it to school. I said, okay. Then, I thought, ‘wait. Is there handicapped parking there? How close?’ I pictured the huge steps up the front of school. I started crying, I can’t even bring my kid his homework.

“My younger son said, “I don’t like you like this.” He wasn’t being mean. I told him I don’t like me like this either. I’ve had a lot of friends look at me funny when we get together and see me with the cane or crutch and say things like, ‘I’m sorry, I can’t get used to seeing you like this. It’s so not you’. My husband’s been a saint through this. I don’t know what I’d do without him.”

 

WAITING FOR SURGERY

Deb C.

Deb says she is not embarrassed to tell anyone about what she’s experienced and feels like she needs to warn people. Friends are shocked that she is hobbling with the aid of a crutch at age 46. She has joined the online community of Mesh Medical Device News Desk, the same group on Facebook page, TVT No, Medical Mesh Legal Support and other sites, and has talked to hundreds of other women who are suffering, some in silence.

One women has posted a video (here) on YouTube of her travails getting into and out of a car. Deb says that’s how she’s getting.

Deb plans to let all of the doctors who consulted her know what the real cause of her pain was, after her surgery. She wonders if they were entirely unaware of the two Safety Notifications from the U.S. Food and Drug Administration, or if they just didn’t think they applied to her?   The first in 2008 said the thousands of complications such as mesh erosion, perforation of organs, pain and systemic changes. The second mores strongly worded in July 2011, said complications are “not rare” and questioned whether the use of mesh was worth the risk.

While these warnings involve synthetic mesh used for pelvic organ prolapse (POP), the FDA has not issued a similar warning for the same mesh used for incontinence (SUI).

“The FDA continues to evaluate the effects of using surgical mesh to repair SUI and will communicate these findings at a later date,” the agency said in July 2011.

So far there has been no update, but an expert panel convened in September of last year seemed to agree that incontinence mesh did not pose the same dangers.  See the FDA July 2011 warning here.

As a result, Deb wonders if this is why she wasn’t fully warned of the risks, and vented her frustration in an article she posted in Facebook as well as MDND called, Mesh: Definitely risky for POP, but for SUI? Eh? It might be okay still, right?”

Finding a lawyer willing to take a case of SUI mesh injured woman sounds like another hassle to Deb that she’s not sure she wants to take on currently. At the moment, Deb, like other women injured by synthetic mesh used to treat SUI, is not represented.

“Perhaps one of my greatest challenges now is waiting.  My condition only gets worse.  Everything is getting harder and harder, emotionally now, as well as physically. To me, what I’m going through seems like a little personal hell. I’m normally a strong, independent woman. I hate missing my children’s events… not being able to do things like walk my dog. I loved long walks through the woods with my kids and dog but that’s something I haven’t been able to do lately. I hope that my waiting and going to Dr. Raz will save me a lot of time and pain in the future.

“I had this surgery so I could be more active and not have to deal with the minor problem of incontinence, but now I can’t even walk.  Had I known one tenth of what I now know about mesh, I never would have done this.” ##

Patient Summary

Deb C. 46 years old

Mesh: Monarc TOT transobturator tape, American Medical System to treat SUI

Implanted: Feb 3, 2012

Explanted: Not yet, waiting for January 2013 removal surgery, Dr. Shlomo Raz, UCLA

Catheter: yes

Represented: no

File FDA report: yes

 

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28 Comments to “Deb C Suffering: Stress Incontinence Mesh Injuring Women Too”

  1. DebC says:

    Jane, thanks for sharing my story here, and my “rant” on the OP-Ed page (http://meshmedicaldevicenewsdesk.com/opinion-editorial/mesh-definitely-risky-for-pop-but-for-sui-eh-it-might-be-ok-still-right/)

    I know that compared to so many others dealing with mesh complications, my story is not nearly as horrific. That is part of what is so sad. This is like HELL for me, but I know it’s only a small taste of what so many other women are dealing with. I can’t believe it is still happening… all the time… more and more women coming forward… I do feel like I want to warn others. I know there are too many women out there who will think the same thing I did – whcih was really to NOT think too much about it because they believe, as I did, that SUI mesh surgery is NOT the same “bad mesh”, that it is “really rare” or that nothing so bad could come from it. That is it just a “minor” surgery. The more I DO think about it, and learn about it, the more infuriating it all is. So, if sharing my story helps even ONE other woman to know the facts and to choose NOT to have mesh for SUI, than I will be so glad I shared this. Thank you for thinking it was worth sharing too

    • Liz Reece says:

      Thank you for sharing your story Deb, and I can totally empathise with your pain, and the misery of not being able to lead a normal life. I also know that the wait for removal is agonising – literally.
      I agree with all you say about mesh for SUI – I too have spent hours researching since I had similar problems but with a TVT – Jane reported my story a year ago. I’m in the UK and the situation seems so similar with lack of warning of complications, denials, and NO warning from our devices regulator, the MHRA. At least the FDA gave out a warning.

      I was one of the lucky few who had a full removal and very good (not perfect) recovery. I know women who had TOT complications who spent ages trying to find someone to remove it – thankfully, all went well.

      I hope that you get strength from support through MMDN – Jane is doing fantastic work.
      Liz

      • DebC says:

        Hi Liz,
        I just read your story… We have a lot of similarities, don’t we? I’m so glad you are doing better, and able to have the mesh removed. It seems just getting a doctor to agree it IS the mesh is half the battle, and the other half is to find a doctor skilled enough to remove it. Stories like your offer hope. I am hoping that after my removal in January, I can also offer more hope.
        Thanks,
        Deb

  2. AmyG says:

    Thanks for sharing your story Deb!

    • DebC says:

      Thank you Amy. MDND is one of the first helpful sites I came across when I first started researching my mesh surgery, and I’ll never forget that you were one of the first women to try to help me understand what was happening. It was a confusing time, and I can’t thank you enough for being there for me when I needed help. Seriously. Thank you.

      • AmyG says:

        Thanks for your kind words Deb. I hope you can find some relief from your pain until your surgery. Please keep us updated.

  3. Deb

    Thank you for sharing your story. What a journey you have been through and are still going through.
    I have heard Dr. Raz is so helpful and skillful.

    I to am awaiting surgery and have the same pain in the groin and legs

    I am in the United Kingdom and the stories I receive through my support group meshies united uk are horrendous and yet still The Medicine Health Regulator in The United Kingdom and health professionals are not doing enough about these very serious complications.

    Take care.

    Teresa

    • DebC says:

      Hi Teresa,

      Thanks for commenting. I’ve read about the UK having all the same type of issues as we are here in the states regaring mesh complications. I hope you have found a good surgeon. ?

      I am flying across the country to go to Dr. Raz… not ideal… but, local doctors would only do partial removals and I’ve heard nothing good about that. I was even told it wasn’t possible to remove the part in my groin/thigh… but that is the part that is causing my pain. Dr. Raz , however, told me that the effort should be done to remove all the mesh, including the entrance to the obturator muscles… and that the type of sling I have (TOT/Monarc) is known to causes this type of complication. He has literally done hundreds of removals, so I know it IS possible.

      • JUDY RAMIREZ says:

        I am glad to have read your story i have one too and all these lawyers who are trying to get women to have them represent this is horrific.I have had 5 surgerys and my life is so messed as is yours.The doc took out as much of the mesh he could and then put a bladder sling in how stupid was that.This was in 2007 the last time i saw the dic was in 2011 he was rude lied told me i had to do rehab for 3 months so i could have sex again,they shouldn,t tell you without knowing what there talking about.I couldn,t get outa bed like you said and i hurt constantley.Why hasn,t anything been on tv with the doctors i am gonna contact every media i can for this its insane what the man who invented this has done to us all.May God Bless and keep you well.If you need to talk contact me at yduj1962@aol.com and i will give u my number.Hugs and best wishes Judy

        • DebC says:

          Judy,
          Thank you for the kind words. I’m so sorry you are going through all this. You have had 5 surgeries?? Were some of those to try to get the mesh out? Can’t believe they put more mesh IN when you were already having problems with the mesh in there…. but, I’ve heard that happens too. They really just don’t seem to get that mesh is NOT a good thing in our bodies! What does it take to get that through to people? I don’t understand how this can keep happening over and over… and how horrific it all is… and yet, it is still being used today on some poor unsuspecting women…
          Deb

  4. Dawn brown says:

    Deb, great article ! I remember chatting early on with you about your hip pain.. You were so close to doing a possible surgery on it… So glad you listened to all of us when we told you we really thought it was the mesh causing your pain…it is a long wait till surgery and I know how you are feeling :( hang in there my friend …. Loves ya , Dawn

    • DebC says:

      Hi Dawn,

      Yes…. the first Orthopedic doctor was so sure of his diagnosis, and told me for sure it was NOT related to the mesh surgery. I remember thinking it was pretty hard to argue with an x-ray. But, then when I got the MRI results and read them myself, it was all so NOT sure. Nothing sounded like they found anything serious… it was all, “possible” this, and “no signs of this”… and maybe one “some slight signs of” that… but, nothing that made it clear to me that this was what was causing my pain. Another doctor looked at the same MRI results and said to me, “They recommended you have hip surgery based on THIS?”.

      That, and talking to people like yourself was was enough for me to change my next appointment. The first Ortho doc had referred me to a dif Ortho specialist to do the tests necessary to see if I was a candidate for the hip osteotmy (major surgery!)… but, I changed that appointment to a different Orthopedic doctor that was highly recommended to me by a friend who HAD hip surgery – and, I said I just wanted a 2nd opinion on the hip displasia diagnosis and the recommendation for hip surgery. By the time I saw him, I had researched this much more and was pretty sure the mesh WAS the problem. The next orthopedic doc took more xrays.. which he agreed were also not real conclusive… said it was a hard area to see… and told me flat out that he did NOT know about mesh or the Urological procedure I had, so he could NOT say for sure if that was my problem, or part of it, or not. He said, based on timing and what your’re telling me about the procedure, it sounds like it could be related, but it’s not my area”. At least he was honest! He also said, “to me” your pain seems to stem from your hip joint which would point towards hip displasia”… And, I said, “yes, but isn’t that *exactly* the same place my obturator muscle is?” (where they put the mesh thru with those hooks!) and he said, “well, yes. yes it is”… The fact that the hip cortisone injection didn’t help me at all, also pointed to it NOT being my hip joint, but he said maybe they did the injection wrong and that they would have to do more testing to try to determine the source of my pain, and to see if I was a candidate for the hip osteotomy or not. He agreed it would be wise to wait until after I saw Dr. Raz (which was already booked by that point for a consultation).

      Had I not researched this myself, and talked to helpful people like yourself, I would probably be gearing up for major hip surgery right now, while the mesh made things worse and worse.. and just setting myself up for even more surgeries and pain… So, THANK YOU for being one of the ones to help me when I was so desperately searching for answers….

      Deb

  5. linda says:

    Hi Deb. Your story came out just as I was out at UCLA getting my sling removed. I only just found it. I have enjoyed reading about you and your family and I so appreciate who you are. Thanks for all the help you are giving to other women, even in your time of pain. I appreciate your friendship.

  6. Betty says:

    Oh Deb, I”m so sorry you’re going through this! Our stories are very similar. I was the same age as you when it was put in. SUI mesh is capable of taking your whole life away – no matter what the FDA says. I am happy you found Dr. Raz early on in your search. I was told the exact same things by Dr.’s that you were told. It’s not the mesh. Too high pain, etc. Thank you for sharing. Hopefully someone will read your story before they repeat this story once again. I pray you get the relief you need and your life is restored back to you. The Dr.’s are playing with fire and they know it. It is justified with things such as “it’s the technique-not the product”, this never happened before – how many of us have heard that line?? You’re in the 3% range. It is outrageous that the complications are life changing (removing) and treated as though they are minor and manageable. I can testify with you that the complications are NOT manageable. I lost the use of my leg also. It is more common than we are led to believe. Thank you Jane that you are telling the truth and getting the word out. Hopefully this will end soon. UNBELIEVEABLE! If this didn’t happen to me, I’d think anyone talking about this stuff was a conspiracy theorist. Sad commentary on the world we live in today. God Bless You and everyone going through this.

  7. DebC says:

    Betty,
    Thank you so much for the kind words and sharing a little about your own story and you’re right, it’s so hard to believe this happens, until it happens to you. I hope the more we share, the more words gets out BEFORE it’s too late for some women. They really should make it clear upfront that IF you have a problem, you are basically going to have a really hard time getting help… AND just how devastating complications are. You are right, they are NOT “manageable”. They are completely life altering. That was the basic point of my other “rant” that Jane was so kind to post on here…(http://meshmedicaldevicenewsdesk.com/opinion-editorial/mesh-definitely-risky-for-pop-but-for-sui-eh-it-might-be-ok-still-right/)

    I am thankful to have found Dr. Raz too, really thankful…. but, it makes me mad that I had to find him through my own efforts and research. I mean, luckily I found websites like MDND, and other helpful blogs…. but what about all the women who don’t really go online? They are just at the mercy of their local doctors, who often seem to be happily in the dark on all this…

  8. DJ says:

    Hi Deb, we have so much in common! Including the two boys and a TOT. I continued having severe problems with any walking, standing, feeling unsteady and unbalanced, and falling frequently for years, even after having “all of the mesh up to the obturators” removed in 2007. I could not lie on my right side to sleep, even medicated, for years. When I asked my surgeon if he could remove the “ice pick” that jabbed my inner thigh with each step, he said, “no, too dangerous due to too many blood vessels and nerves in the area”. I decided to see Dr Raz and had surgery by him in 2010. He actually had to cut into my obturator muscle to remove mesh from there and removed it from where it had attached to my obturator fossa/bone, as well as from other areas. The ice pick is, thankfully, gone and I’m much steadier on my feet now. I even now sometimes wake up on my right side! I still have some nerve related issues/pain but I’m so much better than I was! In case you don’t know, I’m also in the MDND Patient Profiles. It’s actually my letter/speech for the Sept 2011 meeting with the OB-GYN Panel that advises the FDA on TVM issues. I left that meeting very upset because I realized they weren’t going to require the “522 studies” for SUI mesh like with the POP mesh because they felt the complications were “manageable”. So how “manageable” have your complications been? They don’t sound like they’ve been very “manageable” to me!
    I am eternally grateful to Dr Raz! You made an excellent decision to see him even if you have to wait for surgery!

  9. [...] So Deb stepped in.  She sorted my blogs into categories and set it up so that those categories could be easily found.  And she did all this while working full time, and raising her own family while suffering daily with her own mesh injuries.  Life is a struggle for her but without going to work she would lose her insurance.  Fortunately she will also be having mesh removal surgery in January 1013 by Dr. Raz at UCLA.  Who is Deb?  You can read her story here  http://meshmedicaldevicenewsdesk.com/patient-profiles/deb-c-suffering-stress-incontinence-mesh-injur… [...]

  10. marilyn brier says:

    My surgery last March was for a cystocele, rectocele,& stress incontinence. My doctor said, “and while I’m in there I could fix the rear wall of your vagina.[never bothered me or was aware it was a problem!] But hey,the doc is the one who knows best, right?

    I need to know what order to proceed! I have vaginal pain [ability to have intercourse] and achey pain in my crotch along with a shot of pain down my leg sometimes. So what now?
    Do I file something with the FDA? {What & How}
    Do I contact my surgeon again or find a new one? {I had many follow up visits for bleeding, infection, intercourse pain and they basically coterized me each time and finally said “sorry- wait a year to let the surgery heal”
    Do I contact an attorney?

    We feel like I’ve had a “loss of limb” since I have way too much pain during intercourse attempts. I did go to another OBGYN and he said that mesh and the sling mesh should all come out. So how much longer should I wait to see if it heals, since the prognosis for recovery after mesh implant seems unlikely?
    My husband and I both appreciate any direction we get on this. We live in the Los Angeles area.

    • marilyn brier says:

      whoops- I mean “inability to have intercourse!” That in and of itself is life altering in terms of our normal quality of life!

  11. Linda says:

    Marilyn, you are in the perfect place and I know for a fact that Dr. Raz and his two associate women surgeons like you to heal six months before any new surgery but you should know things do not get better, they keep getting worse. It takes awhile to get an appointment so the time to start arranging it is now. They cannot promise you that they can ‘fix’ you because it is all about the extent of our injuries but you will be in the best hands possible. You do need to contact an attorney now so that arrangements can be made for where the removed mesh needs to go. You also have a statute of limitations.

  12. DebC says:

    Hi Marilyn,

    So sorry you are going through all this. Contrary to how you felt, you are definitely not alone. I am so glad you found this site. Linda has a blog that you might also find helpful, along with this MDND website.
    You are lucky you are in LA. You are near the best doctors for mesh removal/help!

    Regarding your questions:

    – Do I file something with the FDA? {What & How}
    Yes! Please report to the FDA. They don’t make it easy – but, the more women who do, the better chance we have of them making some much needed changes. There is info here on that: http://teapapers.com/bladdersling/2011/01/report-to-the-fda/

    – Do I contact my surgeon again or find a new one?
    From my own experience, and based on the fact you are right near UCLA – I would definitely say go to Dr. Raz… or one of his associates, ASAP. See info here on him/them: http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery/

    – Do I contact an attorney?
    Totally up to you. Many lawsuits are out there. Most are not willing to talk to much about that, as most lawyers tell their clients not to. I don’t have an attorney as of yet, myself… I think it’s important to talk to one, tough, if you have questions. I found this article interesting: http://www.drugwatch.com/transvaginal-mesh/lawsuit.php

    -So how much longer should I wait to see if it heals, since the prognosis for recovery after mesh implant seems unlikely?
    From what I’ve read, been through, and heard – I would say, get it out. The sooner the better. Again, I would go to UCLA for more information on this. They are experts in this.

    Take care!
    Deb

  13. holly says:

    Do we have any follow ups on any of the ladies who had the hip and leg pain resolved with surgery by Dr. Raz? I saw Dr. Kim at UCLA last week and she said the groin/ hip pain complication is very rare and suggested that she will remove only the top part of the sling and leave the lower part. From everything I gave read this doesn’t sound like a good idea.Any thoughts please?

    • Jane Akre says:

      Holly–That is an excellent question. In many cases we are waiting for some time to pass to see how the women are faring but thank you for the reminder that people want to know the outcomes. In some cases the nerve damage appears to be permanent.

      • Holly says:

        Thank you Jane for your quick responds. I am sad to hear that nerve damage may be permanent as I have had this pain since 2004, misdiagnosed as femoral acetabular impingment and lately it has gotten worse involing both hips now :(.
        What about the partial removal? Any thoughts on that, seeing Dr. Kim thinks it may work yet Dr. Raz likes to remove the whole sling to my understanding. Anyone out there with a partail removal at UCLA with good or bad results? Thank you ladies!

        • DebC says:

          Hi Holly. It has been 5.5 months now since my mesh removal surgery. I am doing much better than I was before I had the mesh out, but am still working on regaining my mobility and getting better. I am surprised Dr. Kim did not suggest full removal. I specifically went to Dr. Raz because he DID recommend the full removal and that is what he did for me. I started a blog not too long ago, and have more info on how I’m doing on the “Deb Who?” page if interested: http://meshmenot.wordpress.com/about-meshmenotblog/deb-who/

          • Kathy says:

            How do they put these slings in us, hear we are having issues and just forget about us ?

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We hope you find this a helpful resource. National News Editor, Jane Akre, began MDND with the hope of providing the latest news, information and perspective from the regulatory, industry and patient point of view, something that goes under-reported in much of the coverage of medical devices. The public is just now becoming aware that many devices do not undergo the same scrutiny as prescription drugs and are instead grandfathered in under an FDA loophole that has gone largely unchanged since the 1970s. As a result, patients become the post-market clinical trial subjects, and many suffer devastating and permanent injuries.