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Kathleen: Questions to Ask Before Mesh Removal

Mesh after removal

Mesh after removal

‘Kathleen‘ (not her real name which she doesn’t want to use because of litigation)  is a regular reader of MDND and has some suggestions on the questions to ask of doctors before a mesh removal procedure.  She has had her mesh removed and met with many doctors before choosing one.

Since there are so few full mesh removal doctors around the country, or around the world, for that matter, she suggests you sharpen your interview skills – this is a matter of your life and not time to be polite.

Kathleen says she’s heard from many women who have gone to doctors who may not be completely forthcoming about removal, so she, along with a friend who has had removal and reconstruction, compiled a list of questions to ask before surgery.

These are suggested questions. MDND does not offer medical or legal advice.

“Be aware that by not understanding mesh removal, you are at the mercy of doctors who will snip away a small piece and then tell you he/she removed it all, or you can wind up worse off than you were before removal.

“Here are the questions you need to ask.  DO NOT be afraid to ask them.  If your doctor acts offended or uncomfortable, then more than likely it is because he/she is not experienced in removal.  You cannot afford to be practiced on.  Your future and perhaps your life is at stake.”

*Do you remove the mesh completely?

*How many have you removed?

*Can you remove it off the bone?

*Do you remove the arms, anchors?

*What diagnostic equipment do you have ?  (trans vaginal ultrasound that digitally shows the mess, pelvic mri that shows degrees of prolapse/cystocele?)

*How long is the recovery?

*Can you repair and reconstruct me using my own facsia tissue graft within 6 months of removal if needed.

*Do you agree a partial removal only leads to more problems?  If the answer is no, RUN!

*What is done in my aftercare, catheter, pain management and follow ups?

 

40 Comments

  1. Noreen Wideman says:

    absolutely well said!!!!!! thanks from nonie (noreen)

  2. EJH says:

    Partial removals are not acceptable. They lead to more devastation, I know this, I’ve experienced this. I’ve been lied to and so many Dr.’s still believe they only have to remove the part that hurts. Thanks for your questions, they are absolutely right on and necessary!

  3. tina says:

    I just found this website and now I am feeling very worried about the mesh sling that I have. It has eroded info the vagina and I am scheduled to have a “revision” surgery on Monday Oct 1. The doctor makes it sound like such a simple process , just cut , snip, sew and out ya go, but reading many of the articles I am no confused. Has anyone heard of “revision” surgery. I was under the impression that the doctor would just be removing the mesh that has eroded through the tissuee. Any feed back would be appreciated. Thank you.

    • Jane Akre says:

      Tina-

      Before your procedure, please post your question also at these Face Book places, because many of the women have experienced partial removals.

      FB group
      http://www.facebook.com/groups/142368339207055/

      FB Page
      http://www.facebook.com/pages/Mesh-Medical-Device-News-Desk/108924532565482

      Medical Mesh Legal Support
      http://www.facebook.com/groups/209955715772164/

      TVT-No Mesh Survivors
      http://www.facebook.com/groups/158270334301550/

      • Jill Wibbenhorst says:

        Thank you for all the great information. Let me start with, I’m petrified! I had my bladder sling put in during my hysterectomy in 2009. I no longer have a uterus, tubes, ovaries or cervix. My mesh has eroded and can be felt by my husband during intercourse and the GYN can feel it when she examines. I have an appointment to see Dr. Anna Frick in Orinda, CA on January 21. After reading several responses from other women I’m now wondering if all the issues I’m having with my legs, hips and feet are not also related. I cannot walk for any distance, like around my block without my legs getting terribly weak and having to rest for a significant period of time before finishing in order to make it the rest of the way home. I was ignorant to the fact that the mess can effect or damage the nerves. I am now seeing a Dr. Regarding the nerve issue (leg weakness) and am wondering if it is useless to go on because it may be related to this mesh issue. Boy, how I wish I had never opted to have it put in. Looking back I can now see, that is where all my issues began.

  4. […] -Questions to Ask Before Mesh Removal -Transvaginal Mesh Lawsuits -Federal Lawsuit Against C.R. Bard says Mesh is Not Inert […]

  5. Maria says:

    How long was your recovery? I followed this steps since i had a partial removal before with little improvement at the beginning and progressively after 4 months or started with same erosion and awful symptoms and pain

  6. Betty says:

    Do not have a partial removal. It leads to multiple surgeries. I do not understand why the Dr.’s are just not getting it. Some of them believe that mesh is inert (even the FDA has studies showing it’s not), some believe our scar tissue goes through it and holds it in place, then how did it move in the first place? How did it erode? Some erosions are not felt because they haven’t hit a nerve bed. If they do – you’ll know it. Some think it’s their “technique”. I’ve had too many surgeries, read too many studies, talked to too many women to believe this. If the mesh is eroding, this will continue. Get it all out in one surgery – very hard surgery – but worth it. I wish I’d have known that back then. I have a theory – when the mesh is cut – or revised (moved, cut and/or put in a different location) it changes the dynamics of the total mesh. There are forces on the mesh from the pelvis in different directions. Usually the arms are put into the obturator fossa – which holds all the blood vessels and nerves to the legs (there are new meshes on the market that don’t enter the obturator). Our legs move in many directions and dynamics change – especially when walking. Then the urethra and/or internal organs (depending on the mesh) put forces on this polypropylene in other ways. If we’re bending, stretching etc. there are other forces. The pelvis is really a very complex design, which works very well. Even though the polypropylene is usually woven (like fabric, it has an ability to stretch and move, which is very limited), it is still designed to be a stable force to hold the urethra (or other organs, again depending on which one). If it is cut, moved or changed once it is installed the forces against it change. This is after scar tissue has a chance to grow (unless mesh eroded immediately – which is also the easiest time to get it out) which causes the installed mesh to pull in different ways which causes pain. My own mesh shrank, I loss the ability to urinate, it was cut and even the Dr. noted it moved at least 1/8″ on both sides. Then it went in it’s own direction, each subsequent surgery to remove the part causing issues thus changing the dynamics. And more erosion into different areas. There is also FBR (foreign body reaction), which means your own body is trying to remove it – much like it would push out a sliver, this is a huge sliver and a lot harder for the body to remove. If this is the case then cutting it would change the overall stability and it would be easier for the body to push a smaller piece. One problem being that it doesn’t always erode out of the body. It erodes into organs, blood vessels, etc. If the mesh is close to the skin, it is easier for it to erode out. I am not a Dr. I have been personally affected by mesh. I have watched myself and others describe what is going on. We have seen a pattern – get a partial removal, the immediate great pain is much lower or even gone, at least for the amount of time we’re resting for recovery, following recovery and increasing activity, pain returns, often worse than the beginning problem. It is not until the mesh is all out that pain gets any better. But by then there are so many other issues from several surgeries. Even nerve damage, which is extremely painful. The mesh is also easier to remove when it is in one piece. It is very hard to find in pieces. It takes a very skilled surgeon to remove it. I have been told by an expert that the requirements for schooling dropped when mesh came on the market. Before mesh there was a requirement for an extra 3 years of training in order to know how to put in the burch procedure or the MMK (other cystocele repairs, the old-fashioned way). Mesh doesn’t require that education. It is a blind procedure and being an OB/GYN or a urologist is sufficient. It only takes measurements to install. Which is really questionable, it is assuming that we’re all built the same. It does not allow for anatomic anomalies. This is my theory, as I said not medically trained. I pray that you will get the help you need.

  7. Michele says:

    Betty, thanks for your forthcoming and honest answers to many questions I have had. My doctor told me he could only remove the mesh in my vagina and not in my legs. He was only going to partially remove it. But I am having a lot of pain in my hips and groin so I’m assuming the surgery he suggested, begrudgingly, will not fix those issues. My doctor would also not confirm that the mesh was causing me any of the problems I am having. He thinks the pain could be coming from something else, but was unable to tell me what or where. I don’t want to end up worse than I am now. Unfortunately the only doctors who seem to be experts in mesh removal are either in Atlanta or California. And they do not accept insurance and the quote I was given was quite high. I live in New Jersey so either trip will also be expensive. I don’t know what to do. I’m afraid to just go to any doctor in my network even if they say they can remove the mesh.

    • Roslyn Bourgeois says:

      Have read on tvno site about a dr in ST Louis who does mesh removal.

    • Tonya says:

      I too had a complete hysterectomy in 2005 with a bladder mesh and rectocyle put into place and it’s been a nightmare to say the least. My gyn doctor did a revision surgery in 2013 and 6 months later I could feel the mesh again in the same area. So I changed gyn’s and he is wonderful after he examined me he wanted to go in and do another revision surgery but he wanted my Uro doctor to be in there with him to address the bladder issue. The Uro doctor said no and referred me to Atlanta Ga to a Urogyno specialist. He is an awesome doctor and he has done multiple test on my bladder and he showed me and my husband on the cystoscopy video where the mesh has eroded through the vaginal wall again. It looks like two big rusty nails and it is very painful to sit, stand, cough, laugh or anything. And there has NOT been any sex with me and my husband since early 2006. Needless to say I want alllllllllll this mesh out of me. So I am scheduled for vaginal mesh removal on 09/28/2016 at Emory, not looking forward to it but it has to be done. This mesh is the worst thing that has ever been put on the market, if I had been told of the risk I would never had allowed my doctor to use it. Oh and did I mention I have two different kinds of mesh inside of me? Yep you heard me right. I am not using my name because I have a lawsuit going on that has been going on for 5 years now. I am beginning to wonder if any of us with the lawsuits will ever be compensated for this mess.

  8. Kelly says:

    Can anyone give me a list of Drs that do the mesh removal? Thank you!

    • Tonya says:

      don’t know where you live but Neil Gallaway at Emory Hospital specializes in the removal he is a unogyno dr. He is a very nice man who is very good at what he does and he has a great bed side manner with his patients.

  9. kathy says:

    i hve had 5 surgeries for one arm of the mesh coming thru my vagina..,now it is coming thru in another and i am in pain…are there doctors calif. that will remove it? i will not take a blood transfusion and the last surgery the doc clipped a small vessel which caused alot of blood loss and my blood pressure to drop to 51/35…i came out of it ok without a transfusion but won’t go back to that doctor again…now i’m without a doctor and need some advice.

    • Jane Akre says:

      UCLA is generally regarded as the best in the world at complete mesh removals, specifically Dr. Shlomo Raz.

  10. Linda Springer says:

    Can anyone tell me or even suggest what I should do? I have been having problems ever since they installed my mesh implant 5 years ago. Everything from total incontinence to having the Monarch put in. The incontinence is an inconvenience, but the continual UTIs that I have every two to three weeks is not only painful, but a true pain in the butt!! I went to a Urologist and had an ultrasound done on my only kidney, and a procedure that was very painful where they took a probe and looked into my bladder to see if there was anything wrong there. I am very grateful for the prognosis from the Urologist, but I am still having chronic UTIs. The lawyer that I am working with suggests that I have the mesh removed, but after reading some of the comments, I’m not sure I should have it done! HELP!!! After 5 surgeries to try and fix this, I am not kidding, but my Husband wants nothing to do with fixing or even talking about this anymore. According to him “he’s done”, and I don’t blame him. Our sex life has suffered tremendously and we’ve been married 42 years. Everything was fine until I had this damned surgery done!!!!

  11. […] unless you ask your surgeon, they may not even tell you upfront that they are planning on only removing part of the mesh, or […]

  12. […] unless you ask your surgeon, they may not even tell you upfront that they are planning on only removing part of the mesh, or […]

  13. Kim E says:

    Very Confused.

    Yesterday – I went to see GYN and complained about feeling the stitches from the mesh surgery from 2007… how it is painful at times during intercourse and yes my husband feels it both with fingers as well as during intercourse. Anyway she looked, and thought yes they should be removed. Brought in another doc and he said sure no problem, we can resect that out. Very simple, no recovery. I get the paperwork and it states clearly – mesh exposure – remove mesh — not remove stitches but remove mesh. I have called to speak to doc and am waiting. From reading online I am panicking. WTH are they talking about?????

    • Jane Akre says:

      You are wise to read all of your notes from a medical visit to see if they reflect what you said during the visit. Insist on the notes! Remove mesh mesh there is a mesh eroded into the vagina most likely. (Im not a doc) They will do a partial removal, that is, snip the offending portion. Ive not heard of that working to anyone’s satisfaction.. you might check with a removal doc in your area. an expert in removals, not trimming a mesh erosion. You should have a consult with an experienced doctor in this area. There are several interviews on Mesh News Desk with doctors who do a great deal of these procedures.

  14. Tag says:

    I had the mesh sling surgery in 2007 & am having surgery 8/4/16 to remove it. It has gone through the vaginal wall & can’t be felt during examination. I just read that someone was having hip pain…is the mesh associated with this? Within the last few months I have developed a severe pain in my left side of my buttock area. Should I be concerned about that?

    • Jane Akre says:

      There are many people who experience pain in the hip that shoots down the leg.The pelvic region is rich with nerves, ligaments, muscles and is a dangerous area to do surgery. You should probably consult with an expert… someone who deals with and recognizes mesh related complications.

      • Tag says:

        My doctor is a uro-gynecologist in the Austin area & is supposed to be great in this field! Of course, I’m scared to death to have this done! But…I’m scared not to with all the problems I’ve had!

  15. Michelle H says:

    I am currently in the process of seeking a Doctor in the Chicago area willing to do a full removal. I have the TVT tape from 2009, and while I have had some pain and complications, the most recent are inability for intercourse without massive and long term pain and bleeding. Last time I checked, bleeding was a sign that there is something BROKEN….although no one seems to want to admit that. I have had 2 Urodynamic bladder tests with two opposite conclusions. I have been told I have and DO NOT have pelvic floor dysfunction. I have been told to use vaginal Valium suppositories, to allow for vaginal Trigger point or Pudendal block injections, and even exploratory surgery, where I have been assured that in no way shape or form, will the Doctor even attempt, or have the ability to remove all of the mesh. While I am infuriated by the idea of my sex life literally being murdered, I am not so uneducated as to let anyone perform any other invasive procedure on my body unless I am literally dying. Even the best Doctors are only trying to mask the pain. If I wanted to do that I’d buy a bottle of vodka…….much cheaper.

    • Jane Akre says:

      So sorry you are going through this. Chicago, there is Bruce Rosenzweig who is an expert in many trials. He is at Rush University. Or you may want to travel outside of your area…… you do not want too many surgeries since they are all potentially dangerous in a delicate area of the body, not to mention multiple anesthesia. (I’m not a doctor or a lawyer) Please write me and I will give a list of docs who might help. janeakre@meshnewsdesk.com

      • Michelle H. says:

        I have seen him. I actually had hope until I saw him. He and his office are running me through all the same crap, every other Doctor has done to every other woman. Let me just say, if I EVER find an honest Doctor, who really does care (Other than the Dr. Raz I have read about at UCLA) everyone will know. Thanks anyway.

  16. Bonnie says:

    Dr twiss on Tucson Arizona

  17. Lori says:

    Dr. Emily Webber at Shands Hospital in Gainesville, Florida does full removal of mesh

  18. Brenda says:

    I’m due to have mesh removal Aug. 18th Dr. said they would remove as much as they safely could without causing more damage. Dr. is in Augusta Ga area.
    How many experts sre there in Augusta Georgia?

    • Jane Akre says:

      I’ve not heard of any but that doesnt mean they don’t exist. Anyone know from Augusta?

      Hi Angel…. I wish there were as many docs dealing with complications as there were putting in mesh. Here is a partial list from folks who have had good outcomes. It is NOT a guarantee this doctor will work for you however. I have no financial relationship with any of these docs!

      Dr. Charles Butrick in Overland Park, KS.
      Dr. Michael Hibner in Phoenix. (602) 406-6017. Dignity Health
      Dr. Raz, Urology Department, UCLA. 310-794-7700
      Dr. Lennox Hoyt, Tampa, 2 Tampa General Circle, 4th Floor Tampa, FL 33606 (813) 259 – 8500
      Dr. Christopher Walker in Orlando, private practice, UroGyn Specialists 407-648-9400
      Miklos and Moore in Atlanta, 770-475-4499,
      Dr. Veronikis in St. Louis – dveronikis@stlgynsurgery.com (He works with Sara Wood MD, also doing pelvic mesh surgeries)
      Dr. Phillippe Zimmern in Dallas. U Texas Southwestern Medical Center, Professor Urology, 214-645-8765, 214-648-4765
      Daniel Elliott, Urology at Mayo Clinic, MN 800-446-2279, referring a pt 800-533-1564
      Dr. Ali Azadi in Louisville, Norton Healthcare, U of Louisville School of Medicine, Ob-Gyn, 502-409-5600
      Dr. M. Tom Margolis in SF Bay area, private practice, Bay Area Pelvic Surgery, 650-228-4052
      Dr. Bruce Rosenzweig, Rush University, Chicago, Ob-gyn, 888-352-RUSH (7874)
      Dr. Jerry Blaivas, New York City Urology, 212-772-3900
      Dr C. Y. Liu, gynecologic endoscopic surgery, private practice, NYC 212-988-1444
      Dr. Robert Furr, Women’s Surgery Center, Chattanooga, TN 866-899-0679.
      Dr Una Lee, Virginia Mason Clinics in Seattle, 206-341-0560
      Dr. Greg Vigna, 318-548-2649, pudendal neuralgia damage
      Dr. Christian Twiss, Tucson, U of Arizona
      Dr. Jeffrey Snow, Pembroke Pines, colorectal surgery and hernia mesh http://www.jeffreysnowmd.com/ 954-450-1617
      Dr. Francisco Orejuela, Baylor Hospital, Houston, Tx

      Docs I’ve heard reports on:
      Dr. Robert L. Summit, urogyn, Memphis
      Dr. Val Vogt, Memphis
      Dr. Bob Shull, a urogyn from Temple, Texas.
      Antonio Pizarro. Shreveport, LA 318-221-0021. http://www.pizarromd.com/ Excellent doc says TJ
      Dr. David Ellington, U Alabama says DJ, http://www.healthgrades.com/physician/dr-david-ellington-gcjpc
      Dr. Colleen Fitzgerald, Maywood, Chicago says DJ, physical rehab and MD http://www.vitals.com/doctors/Dr_Colleen_Fitzgerald.html
      BM says anyone in Oregon and Washington I would highly recommend Dr.Susan Hobson and Orthpedics Dr Freeze they were amazing and very gentle with my body

      • Michelle H. says:

        Hi.
        My sister went to Georgia Incontinence & Pelvic Health, Dr Michael Hulse. (706) 276-6374.
        He found her bladder hanging half out of the sling after years of suffering and run arounds. He did a removal and she was home in 2 days.

        I saw Dr. Rosenzweig at Rush, Chicago, whom as a last resort, suggested “exploratory surgery.” I have not decided that “exploring” my insides is what I want.

        I will be seeing Dr. Kimberly Kenton at Northwestern in Chicago next week. I will say that her colleague, Dr. Sarah Collins, is one of the most unempathetic people I have ever met. I am not very emotional and cannot remember the last time I was offended, but she had me in tears with how uncaring she was. She walked out on me after ignoring every fact I presented to her.

        I wish everyone luck…seems that’s all we have here.

        • Michelle H. says:

          UPDATE:: So after my literal breakdown in the office, I got a call from Northwestern, Dr. Kenton’s office, on Friday, telling me she had to cancel my appt on TUESDAY for emergency surgery………emergency 5 days from now?
          AND after expressing in every way but on my hands and knees, the pain I have been in and the loss of quality of life both physically and emotionally, was informed I couldn’t be seen for another month.
          NOW IT’S ON!
          My daughter just got a job with the Arizona health department, and WE WILL find answers! Any info found will immediately be shared publicly.
          Wish us luck!!!

      • Judy says:

        Do you know of anyone who has had full mesh removal by Dr. Francisco Orejuela and what their experience was like with this doctor. I have contacted Dr. Veronikis is St. Louis but he has a pretty long waiting list since he’s one of the best in the U.S. besides Dr. Raz.
        So, I’m trying to decide if I should go to Dr. Francisco Orejuela instead of waiting for Dr. Veronikis.

  19. wanda t says:

    I had a mini arc sling installed in 2011. For the past year I have not been able to empty my bladder and have had numerous infections. I went to a local urologist who cut my mesh in the center thinking it would help…it did not. She went in again thinking she had missed something. She scoped me twice …couldn’t see anything. She said she guaranteed there was nothing there. I knew differently. I finally remembered a really good urologist I had known from years ago in a town 100 miles away. He was very upset with the other doctor. He scoped me again and found mesh that had eroded through my uretha into my bladder neck. I have an appointment with a university in ky. I’m very apprehensive about her. I am taking all these questions with me Monday plus more. I have also contacts a doctor in St Louis. ..I’m thinking he may be the one to do it. I really don’t have a lot of time to get this fixed. I’m cautiously optimistic. If there is any advice anyone can give me I would be grateful.

    • Jane Akre says:

      Dr Ali Azadi at U of Louisville and Dr. D. Veronikis in St. Louis. A doctor says there is nothing there and another found eroding mesh. Why not stay with that second doc? You know when there is a problem despite what you are told.

  20. E says:

    I know this is an older blog but I hope someone will comment. I just had mesh removal last week Wednesday. The dr really had to dig to get the mesh out. I just had my follow up yesterday and he said everything looked good even though I’m still bleeding from time to time. Has anyone gone through removal? Can you tell me how long you bled for? Sometimes it’s just a little but this morning was quite a bit with a clot. I’ve called my dr and I’m waiting for a call back but I would like some of your advise because you’ve gone through it.

  21. jodi says:

    I just had a hysterectomy and the sling surgery 2 months ago. I could feel what I thought was stitches from the second week post op. My doctor felt it at my 4 week appointment and also thought it was still stitches. At 8 weeks I called because nothing had changed. He told me it was not stitches after all it is the sling through the pelvic wall and I need to have that area of the sling trimmed off and then he will stitch me back up. I’ve read so much this weekend that scares me to death about that. After reading all this I’m thinking removing it completely would be the thing to do. I’m hoping it won’t be as bad since it hasn’t been in that long. Can my doctor actually do this surgery? He did say if trimming it up didn’t make it heal correctly we would have to look at removal anyway.

  22. LJ says:

    What is the length in cm of the mesh that is used for urinary incontinence?

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