Kathleen: Questions to Ask Before Mesh Removal

Apr 2nd, 2012 | By | Category: Your Turn

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?) To understand what this equipment is, please read this blog.

http://teapapers.com/bladdersling/2012/02/mesh-complication-education

*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?

 

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14 Comments to “Kathleen: Questions to Ask Before Mesh Removal”

  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.

  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.

  8. Kelly says:

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

  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!!!!

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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.