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

Partial vs. Full Mesh Removal Surgery

The person who says it can't be done should not interrupt the person doing it.Women suffering from mesh complications often have difficulty finding a doctor who will acknowledge that their pain IS being caused by the mesh.  When their pain and problems are finally acknowledged as being mesh-related (often when the doctor can actually visibly see the mesh eroding into their vaginal wall and there is NO denying it), what they are usually offered as treatment is a “partial removal”, or a “revision”.

A partial, revision, can also sometimes be called a “trim”, that the doctors will do right in their office, as if it is not any big deal.  Even when they do removal surgery, most doctors will not even attempt to remove all or most of the mesh.  Most patients are told removing all the mesh is “impossible” or “too dangerous”.  I believe they are told this because for that doctor it IS impossible.  Most doctors will only offer partial removals because that is all THEY know how to do. Somehow, the fact that most docs do not know how to remove implanted mesh, does not stop them from putting it in people anyway.

Doctors who are experts on mesh removal, like Dr. Raz, have told patients that getting partial removals only makes it harder to find and remove the rest of the mesh when complications continue (as they usually do).  When the mesh is “cut”, it allows the remaining mesh to fray and fall apart – eroding further, into even more areas, and cause more complications and infections.  This is why many women have surgery after surgery for mesh removal, unless/until they go to one of the experts at removing mesh.  And, we NEED MORE EXPERTS on FULL mesh removal,  AND on NON-mesh repairs.

So, unless you ask your surgeon, they may not even tell you upfront that they are planning on only removing part of the mesh, or that this is all they can do.  Apparently, even when you do ask, some will tell you one thing, and do another.  Many women wake up from surgery to hear, “We could not get all the mesh”.  Or worse, women who were told that all the mesh WAS removed, only to later discover it was not.  Some doctors even put more mesh IN when doing the revision.  It really helps to know what kind of experience they have. Getting recommendations from other women who had mesh removal is invaluable.  This was a big part of why I went to Dr. Raz – he had excellent feedback from the women who actually went to him.

Initially, one local doctor told me they would remove my mesh, and didn’t blame me for wanting it removed.   At first, I was so relieved.  I just thought, “great!  Lets get this crap out of me!“.  However, when I started asking questions, they told me they would only remove the middle portion of the sling. They said, it was “impossible” to remove the parts down in my thigh/groin, which was where my pain stemmed from.    I didn’t see how removing just a small piece in the middle would help me.  Especially when I  did not have vaginal erosion (yet) or vaginal pain.  The doctor also did not sound so sure it would help, but made it sound like no big deal and we could “try it”.  Well, I not only didn’t see how it would help, but I feared it could make things worse.   When I told my doctor I had heard of some doctors doing full mesh removal,  and mentioned Dr. Raz, the doctor said they had heard of Dr. Raz, but that THEY thought it was too dangerous, and would not recommend it.     Well, there’s a big difference between “impossible”, and something they don’t personally recommend, isn’t there?

Fortunately, when I went to that local doctor, I had already been researching (a lot)  on my own and did not just agree to the partial removal.  I heard from other women in support groups that partial removals were not helping them.  In fact, many were saying how they were only getting worse.   One woman, who’s case went to court, had 18 removal surgeries.  Eighteen!    Luckily for me, I heard about Dr. Raz, and even though he was across the country I decided to go to him for a consult.  When I met with Dr. Raz, he told me he had removed many many TOT slings, and that because I had NOT had any partial removals, removing my sling would be easier than most.   Not easy, but “easier”.   He told me that while full mesh removal surgery, even for the experts, is still difficult – removing it completely, or as close to that as possible, was my best bet at full recovery.   Unfortunately, there are not many doctors like Dr. Raz that are experienced with mesh complications or removal surgery, so often women have to travel.   While traveling for surgery is not easy, in the long run,  it can help avoid further surgeries and complications.

I am not sure why most doctors will not refer patients to one of the experts that can do full removals or even mention that as an option before doing a partial removal, but most do not.   If you are planning on having mesh removal – please do some research first.   Ask a lot of questions. 

Perhaps even more helpful than articles, was talking to a variety of others who were suffering mesh complications, and were in various stages of treatment.   You can find support groups  and invaluable information at:

Please remember that mesh complications vary greatly, along with unique individual circumstances and opinions.   Often, there is permanent damage that even full mesh removal can not change, but at least, once removed, the mesh isn’t still eroding and causing even more complications.   Yes, even with full mesh removal, further repairs are often needed, but with the mesh out, you are more likely to be able to heal rather than be fighting chronic infections, and inflammation from FBR.  This is, of course, my opinion based on my own research and experience, and no, I am NOT a doctor.

I know that there is not one cookie-cutter answer that will work for everyone and while I highly recommend full mesh removal, and Dr. Raz, I also recognize that everyone is different.   Perhaps, in some cases partial removal IS the best option.  ??  However, unless I heard that from an expert, who also believed in and was capable of doing FULL mesh removals, I would question that opinion.   You have to remember, the doctors are also being mislead by the mesh manufacturers, and they also do not have all the answers.

In the end you have to make your own (hopefully educated) decision, and go with the doctor and treatment that seems will be the best fit for you.
==============Related Articles=============

Finding the Right Doctor for Surgical Mesh Complications: 
https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/

Searching for Docs Experienced with FULL Mesh Removal and/or NON-mesh repairs: 
https://meshmenot.wordpress.com/2015/01/06/searching-for-docs-experienced-with-full-mesh-removal-andor-non-mesh-repairs/

Mesh-Injured People:  Not rare. Not going away. NOt getting support! :
https://meshmenot.wordpress.com/2015/03/12/mesh-injured-people-not-rare-not-going-away-not-getting-support/


==============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

28 Responses »

  1. My white blood count stays up so could the mesh be the cause?

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  2. Want to see how a Dutch journalist got a mesh implant made from a mandarin fruit bag aporoved with a CE marking for production into a human body ?

    Watch this:

    Implant regulation a farce (or something to that effect):

    Mandarijnennetje als implantaat: Goedkeuring implantaten is een farce

    Implant regulation: Part 2

    http://www.radartv.nl/uitzending/archief/detail/aflevering/08-12-2014/inwendige-medische-hulpmiddelen-deel-2/?tx_comments_pi1%5Bpage%5D=2#tx-comments-comments-3066

    Tangerines Hats as implants: Implants approval is a farce
    Monday, December 1st, 2014
    Internal medical devices, patients should help, but instead they often provide a lot of damage, and severe (pain) complaints. How such implants come over anyway into patients? And how easy is it to develop a medical device and sell? Radar shows it on the basis of a mesh bag mandarins as an implant.

    http://translate.google.co.uk/translate?hl=en&sl=nl&u=http://www.radartv.nl/nieuws/archief/detail/article/mandarijnennetje-als-implantaat-goedkeuring-implantaten-is-een-farce/&prev=search

    Video message Glenis Willmott MEP
    08-12-2014
    Do you soon have a conversation with your doctor about the introduction or use of medical devices? Prepare yourself well with this checklist and associated forms.
    Do you find it difficult to ask the assistance of your doctor? Let MEP Glenis Willmott do it for you.

    http://translate.google.co.uk/translate?hl=en&sl=nl&u=http://www.radartv.nl/uitzending/archief/detail/aflevering/08-12-2014/videoboodschap-europarlementarier-glenis-willmott/%3FL%3D1&prev=search

    Video message dr. Marcel Daniels, chairman of the Quality Association of Medical Specialists
    08-12-2014
    Do you soon have a conversation with your doctor about the introduction or use of medical devices? Prepare yourself well with this checklist and associated forms.
    Do you find it difficult to ask the assistance of your doctor? Let dr. Marcel Daniels, president of the Council Quality of the Order of Medical Specialists do it for you.

    http://translate.google.co.uk/translate?hl=en&sl=nl&u=http://www.radartv.nl/uitzending/archief/detail/aflevering/08-12-2014/videoboodschap-dr-marcel-daniels-voorzitter-van-de-raad-kwaliteit-van-de-orde-van-medisch-special/&prev=search

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  3. I know that I am so tired of infections hurting in my back my side, bottom of stomach having chills nausea problems holding my urine.

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  4. I researched and researched who was the most knowledgable most regarded surgeon for a 100% TVT-O removal in England. I found that person, got independent funding to be able to go to this person and months before the operation researched and wrote detailed list of questions to ensure I was getting a 100% removal. I got to ask these questions 2 days before the operation. I recorded the conversation which gave detailed description of a 100% removal, though I was told that if it was taking to long or my well being threatened I might have to be brought out and it tried again after recovery. I went in believing I was getting a 100 % removal and when awoke believed all but a small section was left on my pelvic bone – but when I got the photos I had asked for only 6 cm of the 22 cm was removed. After a recovery period and observing still nerve pain, lack of mobility in my leg and fighting infection, shivers, sweats – I tried to remain optimistic. When my letter arrived it appears the part of the operation to remove mesh from the leg or pelvic area is not done at the hospital , which I was saddened by because I had been assured before that was what was going to happen.
    I still believe I got the best possible care available to me in England, and cannot fault the care I got, what they did they did well, I still have to ask the question of why a full removal was not done the way it was described before the operation – but the follow up app is another 2 months away –
    After speaking to Dr Raz I believe the expertise is not the same in England, and that only a handful of surgeons are free from the corporate hand/ (partnership with pharma) of the trust or organisation they work for – to offer the care we as meshed up women deserve.
    I am saddened that having the mid section removed it will be more difficult to remove the rest – that another year and another painful operation is ahead for 2015 that is now more difficult – when I was so hopeful my ordeal had ended.
    I now have to consider how to raise money to see Dr Raz to have the rest removed….. And part of my life back.
    The moral of my story is even when you ask the right questions and do the research – you can be end up not getting the 100% removal you were hoping for.

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    • Ugh. That is terrible, Suki! =( I know you are not the only one, and that makes it even more horrific to me. How can they keep doing this?

      Your point, that “even when you ask the right questions and do the research – you can be end up not getting the 100% removal you were hoping for.” – is well taken.

      There is something really to be said for being able to talk to other women who have gone to the same doctor, and getting real feedback. I really hope you can find a way to Dr. Raz. I went to him after talking to many women who had already gone to him and were glad they did.

      Thank you for sharing and commenting here.

      Like

    • Would you possibly share with me what
      Options are out there for me to start finding funding to help me get to California to see Dr. Raz. I have hit nothing but deadends with the doctors for hundreds of miles around me. The pain Ive been enduring for over a year now is very debilitating. I cant imagine being in this chronic pain the rest of my life:( Thank You for your time. Lisa Roy

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      • Hi Lisa… I wish I had better answers for you. It is not easy. That is for sure. I was lucky, and my insurance covered Dr. Raz… not the travel.. and still had large deductible, but still… I was lucky. I also was fortunate that a friend of a friend donated me their airline points. I have heard of many waiting until they could get medicare… or doing fundraisers. I know there are breaks you can get on hotels and airfare… but, the surgery costs? That can be an issue. Some lawyers will lend money – but, often that is IF you go to the doc they connect you with, and often those docs are NOT the answer. Also, you can wind up owing a lot of money to some of these lending companies that are supposedly helping. So, be careful. There are some suggestions on Linda K’s blog at: http://meshangelnetwork.com/2012/11/mesh-removal-no-money. You could also try asking in the groups… and see what others may have found helped.

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    • I know this is couple of years ago now, but I went to see who I believe is the same top woman surgeon in the UK to remove TOT mesh privately and was told she never removed mesh partially and then was referred to her NHS list, where again when I saw her in NHS consultation she said she only did full removal of mesh. On the day of my op in April 2016 I was seen by someone I had never met before a nd told I was having a partial op. I know that if you cancel an operation on the NHS you are not offered another one, and I felt completely compromised but felt the surgeon must know what she was doing. Anyway I had the partial removal, was fine for the first 3 months but since then I have had the worst groin pain, vaginal pain and muscle fatigue possible, and I never had this pain before the removal. I know the operating list ont he day was so packed out that I dont think the surgeon could spend more than and hour or two with any patient, also most of the other patients all had cancer, so as mesh is seen as an elective procedure I was way down on the list of priorities. I feel so angry, not only with the NHS for putting it in but with this renowned surgeon for telling me one thing for months, then being told something completely different on the day. I am also unsure if she actually performed the operation or if her new assistant did it. I have recently asked for my notes from the hospital who put the mesh in 8 years ago, to find out they put 44cm of mesh in me, and I was told by the removing surgeon that she took 11cm of mesh out of me. I had a translabial ultrasound which showed no mesh left……..so where is the remaining 33cm, I dont feel the woman who did the translabial scan was experience.d enough to know how mesh shows up on TOT/ I am now selling my house in order to fund removal in the US…….I feel so let down by the NHS I have lost all trust in even the top surgeons over here. I would be interested Suki to know how your follow up appointment went and where you are now after a couple of years re. removing the rest of your mesh and your pain/health levels.

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      • Madeline – thanks for sharing. I’m not sure which doc you are talking about… but, I’m so sorry you are now having more pain and problems. =( Please do keep looking for answers. This blog doesn’t get all that much traffic, so I hope you will also check out some of the support groups, etc. (listed in footer of this blog). Hang in there. ❤

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      • Hi Madeleine,

        I am very interested to read your story. I think I had the same mesh removal specialist as you who told me she would remove 99% of the mesh. After my operation to remove a TOT she had only removed 7.6 centimetres and the operation took less than one hour. This was 5 years ago. Recently, I have felt pulling sensations in my pelvis and numbness in my leg and arm as well as developing an autoimmune condition. I was on an NHS waiting list of one year before my operation and I don’t know if I have the fight left in me or the money to arrange to get Dr Raz to try to remove it.
        Please can you tell me what you have decided to do about further mesh removal and how you are.
        Thank you
        Elizabeth

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  5. My doctor never explained the dangers of mesh, he never batted an eye as he told me he would use MESH, then when he told his nurse that he would probably need two of the big 12×15 in sheets, I kind of wondered. I had four-1cm hernias, where i had a aorta bi-pass done in 2002…would’ve gotten it earlier but being a “lab rat” I had a back surgeon tell me it was a herniated disc making my thigh muscles burn…but in hospital chart it stated ABNORMAL AORTA FOR PERSON OF THIS AGE…but anyway I always thought that small holes heal better than obsessive holes. I still remember waking up Nov 5, 2010 with a football sized hole where my breast bone ended to where my belly button used to be. Look down in and you see the intestinal muscle, with a green spot of infection on it. My life ended that day as i knew it… soooo much pain, still to today…I want to know why we are not entitled to pain and suffering…. why can’t we get law to cover us??? My family, my husband, shouldn’t have to suffer as I do, everyday…. i have lost all sights of freedom from the pain that i feel every hour of everyday….

    Liked by 1 person

    • I’m so sorry Denise. While most of the media and lawsuits are focusing on tranvaginal mesh, you are certainly NOT alone either. Many MANY people are reporting just as severe, if not worse in many cases, complications caused by hernia mesh. It is not fair. The poster on the bottom of this page: https://meshmenot.wordpress.com/2013/04/19/were-you-told-that-you-were-the-only-one/… If you glance at the pics and name – many of them are hernia mesh patients, and this represents just a handful of people suffering from mesh – all kinds of mesh.

      There are more and more people coming forward with hernia mesh complications. I think, some lawyers may even be taking on their cases – but, I do not know as much about the hernia mesh situation. I do know that while there are over 100,000 lawsuits now against 6 different mesh manufacturers for transvaginal mesh, and I have heard of a few women who have won their cases – that I still have yet to hear of anyone actually getting any money from their lawsuit. Maybe, they just don’t advertise it – but, I know the big cases we heard that one millions usually drag on with appeals, and most women are desperate for help, even if they do have a lawsuit pending. Hopefully, eventually, we start hearing of some actually receiving compensation, even though no amount of money can give people their lives back.. their health back.. and all the things they lost in the mean time.

      There is a support group in Facebook, for hernia and transvaginal mesh, you may want to check that out if you haven’t already – they may have more information, and they definitely will understand and offer support. The group is called “Fighters and survivors of hernia & all vaginal pelvic surgical mesh (Closed Group)”, it’s at: https://www.facebook.com/groups/111893665491196/

      Take care and please hang in there. ❤

      Like

  6. Love the qutoe! Will share your link!

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  7. Dr.Raz removed mesh but the arms he couldn’t get out also he is the one that put it in 2003. I still get many infections and chronic fatigue now my glands are always swollen. Had surgery Jan. 5, 2015 2nd surgery that was second surgery 1st surgery Dr. Kim .

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    • Kathy – I know Dr. Raz use to use mesh years ago… but, then stopped. At least he stopped using it. Most are still using mesh for repairs today.

      I’m confused by your comment – do you mean, he implanted mesh in 2003? And, then he tried to remove in 2015, but couldn’t? And, then Dr. Kim tried again? Or did Dr. Kim try first, and then Dr. Raz?

      I have hear that the longer mesh is in, and the more partials that have been done, the more difficult it can be to remove. So much can vary depending on where/how the mesh has eroded and what kind of damages have been done. It’s horrific.

      I have heard from so many others who were told by other doctors the arms or anchors were impossible to remove – and then Dr. Raz (or Dr. V) was able to remove them. That was my experience too – other docs said it was impossible to get the arms – but, then, Dr. Raz was able to do it. I suppose, no doctor can have 100% success… but, Dr. Raz seems to have the most success stories that I have heard so far, and I like that he no longer uses mesh for repairs.

      Regardless, I’m so sorry you are going through all this. =( Sucks. It must be difficult for you to hear others say he was able to help them, but that he was not able to help you. =( Are you suppose to have even more surgery? Ugh. Must be so difficult.

      Even when people do get full removals, I know so many women still have some kinds of permanent damage or issues. Mesh seems to be the gift that keeps on giving. =(

      This is all why it makes me so mad that so many docs are STILL implanting mesh today, in spite of all this.

      Please hang in there. ❤

      Like

  8. Wonderful information Thank you very much

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  9. Did you find any other doctors that don’t use mesh for pelvic floor prolapse besides the one in CA? I live in NJ and am trying to find a doctor that will not use mesh.

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    • Hi Pam. Believe it or not, it’s actually easier to find a doctor that will do traditional, NON-mesh repairs – than it is to find a doctor that can do full mesh removal. It’s still not easy – because most docts are using mesh – but, it’s easier. Full mesh removal seems to be much more complicated and tricky, and not something many docs are willing to do. But, there are many who were trained to do repairs without mesh.

      I found a very nice older OBGYN near me, in Rochester NY, that has never used mesh – and only does non-mesh repairs. He doesn’t so mesh removal – but, at least if I needed more surgery – he could help without mesh. (Dr. Olander, Rochester, NY – http://www.vitals.com/doctors/Dr_Roger_Olander.html)

      Please see the info, and short list provided in this other post as well: https://meshmenot.wordpress.com/2015/11/29/doctors-who-do-not-use-mesh/

      And, if you are on FB, consider joinging my NY Support group.
      https://www.facebook.com/groups/MeshMeNotNY/

      I know you are in NJ – but, that’s pretty close. There are a few more doctors being mentioned in there, and others trying to find doctors locally that may have some pointers for you.

      Like

  10. I’m looking for a surgeon that will do a non Mesh. hernia procedure for .umbilical hernia

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  11. I have just begun researching this topic on behalf of my husband. I noticed you mostly refer to this as a female issue. Men (and women) who have had hernias repaired with mesh have a high incidence (20-30%) of chronic pain that affects quality of life. My husband was a fit, energetic man when he had his surgery for years ago at the age of 52. Now he can hardly stand or work around the house, his sexual function has been affected, and of course with chronic pain comes other issues like depression. Thank you for your blog!

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    • Hi Tammy. Yes, it is definitely NOT just vaginal mesh. Originally, I didn’t know anything about hernia mesh – and my blog and info is largely based on my own personal experience. As time went on, I heard more and more about people with hernia mesh having similar problems, and started incorporating and sharing some info on that as well. We need more people to speak up with their own personal stories.

      The lawyers also mainly are focusing on TVT mesh, because of the way it was marketed allowing them to have more of a case than hernia mesh that was used for longer. But, it IS the same material, and MANY are suffering from hernia mesh too. There are some lawsuits coming forward now for hernia mesh as well.

      Please check out this OPEN/public group for all: https://www.facebook.com/groups/meshproblems/,

      and/or this support group for people with hernia mesh and TVT mesh: https://www.facebook.com/groups/111893665491196

      I know there are a few doctors specializing in hernia mesh repairs… I know Dr. Petersen does… and many seem to like him. https://www.facebook.com/noinsurancesurgery/?fref=ts

      Like

  12. Had mesh put in for hernia repair 2010….been having pain since.the surgeon who did this refuses to see me…said learn to deal with it. Have had injections for psin..did not work,got sent to pain managemen…told me cognitive behavioral management and opioid would help…hot out of there fast…does no one want to take liability for the truth?

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  13. my insurance is sending me to Cedars-Sinai in Los Angeles I wanted to go to UCLA but they’re not contracted with them does anyone have any information on the doctors at Sinai I need a complete removal thank you

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Trackbacks

  1. Searching for Docs Experienced with FULL Mesh Removal, and/or NON-Mesh Repairs | Mesh Me Not
  2. Dr. Shlomo Raz | Mesh Me Not

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