Adding my two cents to the mega mesh mess surrounding transvaginal mesh complications…

Finding the Right Doctor for Surgical Mesh Complications

For those suffering from surgical mesh complications and in need of mesh removal surgery – finding (and getting to) the right doctor is quite possibly as difficult as it is for the surgeons to actually remove the mesh.

Here are some basic questions to ask any doctor that you may be considering using for mesh complications/mesh removal:

  1. Do they recommend, and can they do, FULL mesh Removals? (vs partial removals?)
  2. Are they able to do “Non-Mesh” repairs?
  3. What diagnostic equipment do they use to “see” mesh before removal surgery (if any)?
  4. Do they still implant mesh? 
  5. Are there positive references from others who already used them for mesh removal?
  6. Are they affiliated with, or working for, any of the mesh manufacturers, etc.?

It’s important when looking for a doctor to not only ask questions – but, to really see if their answers check out.

Unfortunately, I’ve heard of too many doctors who claim they will remove “all the mesh”, but then they do not/can not. Experience and positive references are KEY. Mesh removal is NOT easy. If a doctor does not recommend FULL mesh removal to you – there’s a good chance they are not going to do, can not possibly do, and/or WILL NOT do a full mesh removal.  Now, if I went to one of the few doctors that actually does full mesh removals regularly for people with mesh complications – and THEY told me that the mesh could not be removed – well, then that is different.  But, if a doctor NEVER recommends full mesh removal?  That’s a problem in my book.   Even if they SAY they  can/will do a full removal – how many removal surgeries have they actually done? How many of those surgeries were successful?   Do they even consider the “anchors” or “arms” as part of a “full removal”?  What are the odds that you will have any permanent damage or re-occurring issues?  If they still implant mesh, how often do they still use it?  Why?  Does this matter to you?  Are they confidant they can help you with any further repairs necessary without implanting more mesh (assuming you do NOT want more mesh put in)?

When taking other people’s recommendations, take everything into consideration.  Consider the source(s).  Is this an advertisement coming directly from a lawyer or doctor?  Can you find others (in the support groups or forums) that are giving them positive feedback?  Are there comments regarding long-term results vs. short term?   Did they even actually have mesh removed?   When asking questions in any of the support groups, also know that there is a search tool at the top right of any group.  You can use that tool to search for a doctor’s name, or a specific word, and it will pull up any past conversations in that group that mentioned whatever you search for. This can also be a great way to get information.   How about the doctor’s patient satisfaction reviews on  “Vitals” (http://www.vitals.com) and on “Healthgrades” (http://www.healthgrades.com)?  Do those reviews mention anything remotely like what YOU need done?   When you do see comments from others, are those people doing better?    Same goes when hearing negative feedback.  Try to get all the facts.   Is there more positive than negative feedback? or vice versa?

Too often, a woman goes to to a doctor, and thinks they have found a great doctor.  Especially if they have already gone to a few doctors that would not even mention the “M” word.    But, then they have surgery and the doc they thought was so great, winds up not being able to actually remove all their mesh.  Sometimes, they don’t even try to remove it all, and maybe never even intended to.  Worse, some women report that they later discovered their doctor had flat out lied – by telling them that they did remove it all, only to discover later (usually when problems continue to worsen) that the doctor only removed a small portion.   It’s almost as if they believe it’s all in our head, and so if they tell us it is all out, we will miraculously get better.  Sorry docs.  Mesh doesn’t work like that!  Perhaps the worst is when I hear reports from women who said their doctor removed some eroded mesh, and replaced it with MORE mesh unbeknownst to them.   Many of these women who thought they were being helped, wind up having far worse problems, more surgeries, and subsequently may change their mind down the road about the doctor that they originally were signing praises about.

I’m not trying to scare people… but, unfortunately, I’ve seen this too many times and so people should know it happens and that even if others ARE recommending a certain doctor, you still need to do your own homework.  Personally, there are very few doctors that I feel comfortable recommending to women with mesh complications other than Dr. Raz (who I went to).  This is because Dr. Raz was my personal experience, and I not only feel like he saved my life, but have heard positive feedback on him from others as well, repeatedly, for years.  Another doctor that has been getting more and more positive feedback is Dr. Veronikis.   I’m not saying there are not any other good docs out there, or that it’s not worth trying to find them.  We definitely need to … and I’m trying to too…  I just haven’t found too many yet, that I’m personally comfortable backing up.   But, that doesn’t mean  YOU can’t.  If you went to a doc, and they helped you – then, I hope you will share.  We need more people to share their own experiences – good and bad… and their own recommendations.

vitals

Rate your docs, please, on Vitals.com

Matter of fact, PLEASE check the reviews for any docs you are considering going to, AND also leave reviews on ANY of the doctors you have seen on at least these “Vitals” (http://www.vitals.com) and on “Healthgrades” (http://www.healthgrades.com).  Please share your good and bad experiences.  More and more people are using these tools when searching for a doctor, and they also feed into other review sites. The “Vitals” one is especially nice, because it allows you to leave actual comments.  This sites feed into other doctor “rating” sites… along with healthgrades – but healthgrades doesn’t allow comments. So, try to use VITALS, and mention “mesh” in your comment. You do NOT have to give details, or your real name, if you don’t want to.  Do not be defamatory… just state facts… and would you reccomend or no?  I think this website could be a great tool, for all those seeking desperately for doctors to help with mesh complications.  Plus, if we all made comments, it not only could warn people of doctors that didn’t help, recommend doctors that DID help, but it could ALSO raise awareness to just how many of us are out there with mesh complications.

But, back to choosing your doctor – Of course, it’s always an individual choice, and people need to do their own homework as best they can (I know “they” don’t make it easy”), and go with their own best personal options.  Every person’s complications and issues are unique – and so YOU need to choose the best doctor for YOU.  Often, you may need to go to a few doctors before finding the right one.  Frustrating, I know, but better than settling.

Sometimes, the best doctor, is not the most convenient option.    Not everyone can travel for surgery, but before you automatically rule that out – you should look into all options and think of the big picture.  This also goes for local Primary care docs, etc.  The best doctor is one that will listen to you and take your side… not necessarily the one closest to your home, or that never makes you wait longer than a few minutes to be seen.  I love my PCP because he does actually listen and takes his time with me, but this also means when I go to him, I usually have to wait well past my appointment time.  Sometimes, hours.  But, I decided he is worth the wait, because when it is “my turn”, I know he will give me the time and attention I need as well.

Also – it is helpful to know if the doctor you are going to is working for, or is affiliated with any other companies. Many are paid consultants, speakers, and trainers for mesh manufacturers, or other medical companies. If they are helping to sell/market something, most likely, they are going to be supportive of it. It could also mean that they are an “expert” in something, and not necessarily be a negative thing – but, it is good to know either way.  Check their faculty pages at whatever hospital they work at. Often, other affiliations are listed there. If you look at articles they may have published recently, they can also be very informative to see what kinds of research they are doing, and what they believe. Also, usually a published article will state if there’s any conflicts of interests right on it.

It is sad that we have to be so careful – but, I know too many who have found out the hard way that you have to be very very careful who you trust. Besides, a good doctor will have nothing to hide.

==============Related Mesh Me Not Blog Posts================

==============Related OTHER articles/Posts================

==============Support Groups================

Perhaps even more helpful than articles, is talking to a variety of others who are suffering from mesh complications, and are in various stages of treatment.   Three of the larger support groups I found helpful are: 

 

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Categorised in: Mesh Complications, Mesh Removal

21 Responses »

  1. I would like to ask this: What is wrong with going to a Doctor to have your mesh removed and this Doctor still uses mesh in procedures? I went to see this young Urogynecologist/Pelvic Reconstruction Doctor with several issues: hardening of the uterine lining and of course many issues with mesh. He told me he had not seen these kinds of problems associated with mesh. I told him that he has now and it is happening to me now and who would help me to rid my body of this mesh? I said this is happening to 10,000’s of women and we need help. Well, he took care of my uterus DNC and a huge polyp that he would of bet the farm was uterine cancer do to the weight gain and swelling in my abdomen and legs. But it was not cancer. It’s the Mesh, I said. I am mesh free now because of this highly skilled Doctor that understands the anatomy of a women’s pelvic system. He had the patience and worked his skillset to remove the evil mesh from my body. As mesh will do it was not finished torturing my body for infection set in and the incision was opened to treat the infection. This Doctor has been by my side 100% and I have received outstanding care from everyone involved. I am 7 weeks post mesh removal and my wound that was over 10cm deep and 9cm widex5.2cm wide is nearly closed. My healing will continue for weeks to come and will be followed by Pelvic Floor PT. He told me the truth unlike the implanting Doctor who still is in denial of what the mesh did to my body. I would recommend him for mesh removals.

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    • Hi “jurbs” – welcome here, and thanks for commenting and sharing. Much appreciated. Your question is a legitimate one… “What is wrong with going to a Doctor who still uses mesh?”. There’s nothing “wrong” with it… choosing your doctor is a personal choice, which I also said. You have to do what will work the best for you. This is also why I said:

      ===“If they still implant mesh, how often do they still use it? Why? DOES THIS MATTER TO YOU? Are they confidant they can help you with any repairs without implanting more mesh (assuming you do NOT want more mesh put in)?”===

      I said, “Does this matter to you” – because, for some people, it may not matter. For others, it does make a difference and they would prefer the doctor actually believes mesh is dangerous and a problem as they do. Either way, I think it’s good to know if the doctor does or doesn’t, because it brings up very legitimate concerns and questions like:

      – If the doctor does use mesh regularly, do they just think your problems are unique? IF yes – will they even recognize or acknowledge the mesh is causing your problems and treat it as such? Too many do not.

      – If they still use mesh, will they be able to make your repairs, if needed, without putting in more mesh? This is a big one. Too many doctors are not even trained anymore on how to do repairs without mesh. So, this could be a problem. Besides, IF they seriously don’t think mesh is the problem – why wouldn’t they put more in? Many women have wound up with multiple slings and mesh because doctors kept adding more. Ultimately, the more mesh that’s in, the harder it is to remove, if/when necessary.

      – I also have to wonder, if they do still use mesh – and have “never seen any complications” (hard to believe in this day and age, but ok) – this means they also never removed any mesh, right? So, I would have to question if they were even capable of removing it, without causing more damage? Full mesh removal is a very difficult and often risky surgery. In your case, you said this doctor was able to remove it all, and you are very happy with them – and that is awesome. However, many other doctors have “tried”, and failed miserably a the patient’s expense.

      – If a doctor DOES believe that the mesh is causing major problems, and maybe they are doing more and more partial and/or even full removals – BUT they also still implant mesh regularly – what does THAT say? To me, this is perhaps even more frustrating. I don’t get why any doctor who sees all the problems up close and personal, and knows how difficult (if not impossible) mesh is to remove – WHY would they keep implanting people with it as well?? Especially, when the FDA says there is “no evidence that mesh repairs have any clinical benefit over non-mesh repairs”? To me… this is just more of a moral thing, and I would have to ask myself if this is just about the $$ for this doctor? And, do I want to go to a doctor like that? Trust and confidence come into play.

      All that said, I realize there are NOT many doctors out there who do not use mesh at all. Many are starting to, at least, use it more sparingly. (Which is what the FDA has asked them to do some time ago). However, many are still thinking it’s the “gold standard”, especially for SUI, and putting it in left and right. Again, frustrating. Maybe more doctors, like the one you went to, will start changing their opinions… ?

      So, I do believe it’s something worth knowing, and can matter a lot. However, again, everyone has to chose the best doctor for their own unique situation. And, if you find a doctor that WILL actually listen to you, believes you, AND has the skill to actually remove the mesh and they CAN and HAVE actually helped you? Well, that ultimately trumps all. You actually getting better is what matters most!!

      And, I am SO HAPPY that you found a doctor who you like, and that ultimately helped you. Matter of fact, I hope you filled out the online reviews on him.. AND, would be happy to have you share their contact information on this post, or to me in a private message (meshmenot.wp@gmail.com). Best of luck to you as you move forward with your recovery, and PT. =) ❤ I do hope you will keep us posted on your long-term progress. Take care.

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  2. Reblogged this on cindylouburwho and commented:
    Deb, I am from the medical-legal community and reblogging this for you on wordpress.com You are not alone.

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  3. Can I post this blog on my website?? If not, no problem.

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  4. Has anyone suffered from chronic infections (post partial mesh removal) – with an onset of neurological issues? I have traveled all over, referred to specialist after specialist, with a great deal of head scratching. My labs are all over the place, my speech is slurred, my balance is off and I am having horrible coordination issues. Could all of this be mesh related? Immune system issues? HELP – my life is forever changed – fear losing the little I have left, including my marriage. MEANWHILE C.R. Bard makes money………

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  5. I had the mesh removed about 4 yrs ago. He said it was eroded. I suffered since it was used for a bladder tackup, but I did not know it was used. It hurt my marriage greatly. We have moved to a small town in Ga. since it was removed in NC. I have been to 2 urologist with continuing problems & they can’t find the reason. I called in to one of the law firms on TV & nothing is being done. Can’t afford to travel to Calif. Were on SS only.

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    • Sina –

      I’m so sorry. Your story sounds very familiar. I know it’s not always possible to travel so far… Initially, I did not think I could either – but, then I did. There are more doctors that are doing removals now… but, not many that do full removals. If they only remove a small piece, then the rest of the mesh often continues to erode and cause problems. That may be what is happening with you. A doctor who specializes in mesh complications is probably the only doctor that will recognize this.

      Did you check the links at the end of this article? There is a listing of sorts of docs that others recommended. Just be careful, and ask questions before any procedures.

      List of doctors who remove TRANSVAGINAL mesh (USA) by Mesh Problems Group:
      (https://www.facebook.com/notes/mesh-problems/list-of-doctors-who-remove-transvaginal-mesh-usa/971282612902683)

      You might want to ask in the larger support groups too… Maybe there are others in your area. (links to them above also, at end of blog post).

      Like

  6. Does anyone have a recommendation for hernia mesh removal in the UK?

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  7. Hi Deb, I am getting closer to my visit to Dr. Raz, a couple weeks, 🙂 can u tell me will he do that translabial ultrasound on your 1st visit? Also, how r the prices at Tiverton? I would so appreciate a response, my husband is trying to find info but nothing like knowing of someone that has been thru it. I am soooo soooo glad for u that u r doing sooo well. I hope Dr. Raz can help me! Thanks Deb,
    Pam Young

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    • Hi Pam. He did not do the translabial ultrasound at first visit for me. He did it just before surgery… I think, to have a better idea at time of surgery of exactly what they were dealing with. I did stay at the Tiverton. They offer a discount for patients of UCLA. It’s still not cheap, but worked out. They have a shuttle to UCLA and all that helps. Please see this photo album in my public FB Page, with info on each pic….

      http://www.facebook.com/MeshMeNot/photos/?tab=album&album_id=304027056398512

      SO GLAD you are going there soon!! I ❤ Dr. Raz!

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      • Thank u Deb, I was hoping he would do the translabial ultrasound on my first visit only because my doctor that put my several meshes in, 😦 says he will NOT take them out because its too dangerous! So I am very scared! I’m so grateful for your response!
        Thank u again,
        Pam

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  8. I have several ME I’d and Catscans and ultrasounds having extreme pain in abdomin and right testicle and at right hip Dr.are saying they would be able to see mesh which I find untrue.I need someone to remove this mesh so Hopefully I can go on without this pain I’m having.I’m in NC please help.

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Trackbacks

  1. Partial vs. Full Mesh Removal Surgery | Mesh Me Not
  2. Partial vs. Full Mesh Removal Surgery - Transvaginal Mesh
  3. Are you a GOOD mesh? Or a BAD mesh? | Mesh Me Not
  4. Searching for Docs Experienced with FULL Mesh Removal, and/or NON-Mesh Repairs | Mesh Me Not
  5. Sometimes, it seems the only ones listening ARE the lawyers | Mesh Me Not
  6. Is it ok to jump right into “minor” surgery for SUI? – Mesh Me Not

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