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Is Mesh Removal the answer to my growing systematic and hernia site issues? HELP!

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  • Is Mesh Removal the answer to my growing systematic and hernia site issues? HELP!

    Hi, I am glad I found this board, it is a wealth of information and I appreciate all the surgeons and people who share their advice and stories. I will now tell my story in the hopes to see if others have similar stories and if they can share if they chose to remove their mesh and if the symptoms went away and the general outcome of the removal. I am very close to deciding to move forward with the mesh removal due to the progression of the symptoms that I will describe below I feel I have no choice now. Thank you in advance for your help, this has been a developing nightmare over the past 7 years.
    I will try to keep this short. I severely pulled my right groin in 2009 from playing softball and it eventually developed into a small direct left inguinal hernia. I tried to manage these injuries conservatively for 2 years but the pain\burning in this area and down my leg was too much to bear and it was not getting better and I feared, according to literature in surgeon offices, that it could become strangulated. I went to 3 experienced AHS hernia surgeons and mesh was recommended due to it now being the GOLD Standard and having a better reoccurrence rate (arguably by some). I was NOT offered a non-mesh technique and when I brought the idea of a non-mesh technique, like Shouldice etc, they just ignored it and referenced better reoccurrence rates and that the industry now uses mesh. No mention of potential quality of life due to mesh issues like allergy, chronic inflammation, systematic\autoimmune conditions which I now know I am now experiencing from the polypropylene mesh.
    The skilled experienced surgeon selected was from a well-known ďhernia instituteĒ and I do not question his skillset, only his lack of a pure tissue option. He successfully implanted the Ethicon Ultrapro hernia system into me using open method in June of 2011 and after a few weeks I was healing OK and walking then started running again a couple months later as I am an avid runner. The burning was gone, all seems to be ok the first year as I healed from the surgery.

    The next part is hard to describe. In the next few years, I started to experience on and off ache\discomfort\burning\pain where the patch was located. When this happened, it was accompanied by intermittent dizziness spells\off-gate\fatigue and episodes of general malaise and occasional rashes and burning feeling in stomach lining among other strange symptoms\feelings like I was being poisoned. At first, this would only last a couple days and then I would be fine for 1-3 months. It was not enough to stop my activities so I just worked through it. Then it would come back for a little longer - a few days - and then be ok for a month. This has gone on now for the past 5 years or so progressing slowly to the point where most every day I now experience these symptoms. Last year, the rash covered half my body along with a burning tongue that developed. I went to a dermatologist and had a patch test and now I am allergic to Balsam of Peru, Cocamide DEA, Fragrances, propylene glycol, Sodium Benzoate.

    So, I did go back to the original surgeon and he just said the mesh is intact, no sign of reoccurrence and you must be in the 5% of cases that have these issues and just to keep taking Advil and that I should not remove the mesh! I also went for a second opinion with a different hernia specialist and confirmed no reoccurrence. I had a battery of blood work done and all came back clean except the ferratin level was elevated and since the iron levels are fine my GP said this was likely due to rash\inflammation. Advil seems to help calm symptoms down and, since this is an anti-inflammatory, I think chronic inflammation from the mesh is the main cause. I also suspect polypropylene oxidation over time as a possible cause for many of the developing systematic issues.
    I would now like to ask the community if there are similar stories like this and if they opted to remove the same type of mesh, the outcome, who did it, and if the symptoms went away. I feel at this point that I do not have a choice except to remove the mesh and I am looking for the most experienced mesh removal surgeons to get an opinion and plan to remove the Ethicon Ultrapro Hernia System that was installed in me for an open direct hernia. I do have the surgery report in hand. I live in the Philly area so Washington-Philly-NYC area would be preferred but would consider traveling for the best outcome\surgeon for this specific mesh case as I understand this is a very specialized area. I sincerely thank everyone in advance for their replies and advise and hope to update everyone as my story moves forwardÖ

  • #2
    I am sorry you're going through this. Here are a list of hernia surgeons who are frequently mentioned on these forums and elsewhere that may be helpful to you as a starting point, but be sure to do your own research:

    - Dr Brian Jacobs in NYC

    - Dr Igor Belyansky, MD

    - Dr William Meyers in Philadelphia PA

    - Dr David Grischkan in Ohio

    - Dr Bruce Ramshaw in Tennessee

    - Dr Yunis in Sarasota FL

    - Dr Robert Tomas in FL

    - Dr Shirin Towfigh in California

    Best of luck and keep us updated on your case.

    Comment


    • #3
      Here is something that I would add to Chaunce's advice - get a copy of your medical records. Then write a clear and concise letter describing your situation. Send a copy the records and the letter, in paper form, to whichever surgeons you would like advice from, with phone and email address included.

      I found that I could go to an in-person appointment with a clear picture in my head of what I wanted to say but, typically, the surgeon or doctor would, it seemed, not really hear what I was saying. Written words are clear and can not easily be "not heard". It's easier for them to read and ponder what you're saying. Plus they have time to think about how they might respond and if they want to respond. In a clinical setting, the training is to get in, listen, make a diagnosis and a recommendation, then get out. It's just the way the system works these days.

      Good luck. My surgeons have all responded to my written letters. The responses were more productive than the result of the typical 10-15 minute phone or in-person meeting. Make sure the letter is short and to the point though, They will have more time to read, but still be time-constrained.

      Comment


      • #4
        Thank you both for the reply. I have reached out to a couple on the list to further assess my situation. Good advice for the letter, I will work on a concise summary.

        Question: What imaging test and other medical results (type of specific blood work etc.) would most of these surgeons like to see with a summary? I would like to reach out to most of the list with a packet of information and get multiple opinions on this before deciding to move forward. I have seen ďDynamic MRI anterior pelvis with valsalva without contrastĒ mentioned here but not sure if this is best for my situation. I have also read that CT scans may not be best to use for polypropylene patches as it could potentially help to degrade it, not that it needs anymore help there as from what Iím reading it will erode/oxidize in time. Is there any truth to this?

        I am not taking this lightly. I am in a situation where Iím not in extreme pain fortunately so have some time to research but I am dealing with these reoccurring issues. It doesnít stop my daily activity but it definitely affects my quality of life in too many ways now. Thank you again for Everyoneís input and compassion it is humbly appreciated!

        Comment


        • #5
          Hello Khernia,

          Just read your post, feel sorry about your issues you are having. Might not be entirely relevant to you, but wanted to ask you a question. I'm in a similar situation to you in terms that I am wery active, and have recently developed hernia, most likely caused by excercise. I had a scan done and it is inguinal hernia, but am also having really weird symptoms as well. I am getting pins and needles all the way to my foot, am struggling to walk longer than half a mile due to severe pain near femoral region. When I'm resting or staying in bed, pain and leg tingling goes away.

          Question is did you experience similar symptoms with your hernia? Although you have issues now, did the leg tingling went away after operation? Hope you will find your answer and successful resolution soon

          Comment


          • #6
            When I had my left direct inguinal hernia is was mainly mild to moderate pain based on how active I was and burning in hernia area and down the left leg. I did not experience pins and needles but I imagine if you are diagnosed with it may be related. The surgery for me resolved the burning the first year and then it started to come back slowly after that.

            Knowing what I know now, If you cannot conservatively manage the hernia now and you must move forward with surgery then I would only do a pure tissue fix and stay away from any permanent or Polypropylene meshes at all costs. A couple percent difference in reoccurrence rate is not worth having this in your body in my Opinion. A lot is coming out about it now how it is can cause chronic inflammatory conditions, allergies, Chemical sensitivities, and it can erode and cause systematic/autoimmune issues. I wish I could go back and change my decision but I can’t...but I can help you make an educated decision which I didn’t have seven years ago. Do your own research, Search the Internet talk to some of the surgeons on the site that only do pure tissue fixes and I believe your decision will be an easy one. Good luck to you!

            Comment


            • #7
              Hi Khernia,

              Thank you for your message. I have read a lot about meshes, and will discuss my options with doctor tomorrow. Apparently majority of the problems experienced were with the old meshes, newer ones are better tolerated by body. Saying that, I will be insistent on disolvable mesh, they last for approximately 2 years. I already had an orchiectomy on my left testicle back in January, so this will be my second op this year. Thank you again and God bless :-)

              Comment


              • #8
                Originally posted by SomeGreyBIoke View Post
                Apparently majority of the problems experienced were with the old meshes, newer ones are better tolerated by body
                No offense GreyBloke but I think that this is backward. The mesh materials are still about the same, old and new. Polypropylene or polyester, variations of weave and design, sometimes blended with absorbable fibers. And many of the threads you will have seen on this forum are from recent surgeries. I has state-of-the-art Bard Soft Mesh implanted by a state-of-the-art surgeon using the latest methods in late 2014. Then had it all removed three years later. It was almost the worst experience of my life, the three years of realizing that I wasn't going to get better, and that the experts I had trusted really did not know and/or accept that the problems with the material and/or the procedure were real.

                The majority of the surgeons who do this work are trapped in the mess. They really have no choice but to repeat or pass on what the medical device makers tell them.

                I had the same general thought, back in 2014, just three and a half years ago, that you're expressing - that the latest materials must be better. How could they not be, there's no way that this could be allowed to go on for years? But it's true - the problem with mesh implantation has been around for at least 10-15 years, probably longer. But they have committed to making it "work" and can't go back. Don't get lulled in to trusting the big institutions. Find an individual who can say, honestly, that they have patients who are known to be doing well with what they plan to do. Even then evaluate if they really "know" that to be true. There is a lot of psychological pressure to believe that it works.

                This a big problem and these doctors really are stuck with it. They can't get out from under it. Do them a favor and be very certain that the procedure you choose will deliver the results that you want. Surviving is not enough, you need to be able to live with it. Read the stories about the repetition of "no recurrence" when people go back to their surgeon with discomfort. Recurrence is the measure of success, not quality of life. And realize that the discomfort is constant and never goes away, if you get the wrong material and procedure, whatever that may be. Nobody is tracking results, good or bad.

                Comment


                • #9
                  Thank you very much for your email. Does make me think twice. Either way, I need to have something done as I cannot function anymore. Luckily my hernia is small, but for some reason almighty painful. My thigh is on fire and leg tingling all over. I previously had extensive stitching done after an accident and that was nowhere near as painful as this. I will be insistent on having disolvable mesh put in. Have been researching best surgeons here in UK, can go with our NHS and have standard incision/mesh, but luckily I have also got private insurance, which will hopefully give me more options like laprascopy and disovable materials.

                  Thank you kind sir again and praying for a quick resolution for us all.
                  Last edited by SomeGreyBIoke; 04-16-2018, 04:14 PM.

                  Comment


                  • #10
                    Good intentions, ďRecurrence is the measure of success, not quality of lifeĒ you hit it on the head right there I couldnít agree with you more. Not a day goes by the past seven years where I donít feel some level of discomfort of some sort and regret not getting a pure tissue fix. It should have been recommended by the surgeons for my small hernia at the time but youíre correct the medical community pushes the ďultimateĒ fix on the doctors nowadays to make money and without long term testing and in many cases fast tracking the approval if itís approved it all and not pushed through under the FDA 501K process. I also wonder how many out there are suffering in silence where the pain isnít that bad but the discomfort impacts your life...Are these people part of the numbers that you see in literature. Well Iíve never been contacted by anyone to ask how Iím doing since the 3 month follow-up after my surgery...

                    I am sorry to hear about your ordeal. How are you doing now? If you Donít mind sharing, I have a few questions for you. Did you have open or lariscopic inguinal mesh removal? Weíre they able to get it all out and do tissue fix? If so what method of fix? How tough and how long was the recovery? Thanks in advance.

                    Comment


                    • #11
                      I had the TAPP procedure used to remove the mesh. He got most of it, but like others who have had mesh removed there was a certain area that was too tied up with critical vessels to take the chance. That was on one side, where he left a small patch on the posterior wall. On the other side he thinks that he got all of it. Because of the constant irritation the whole abdominal wall gets scarred up. So, the hernia(s) are gone. After a few years of the body dealing with the scar tissue, they might come back, but there's no way to predict it.

                      The recovery is ongoing. Even without the mesh, my lower abdomen is still stiff and flat, but getting more flexible. But, unlike when I had the mesh inside me, it's a constant upward progression, rather than a slow stair step downward. There's hope and I feel like I'm making real progress. I just don't know how far I'll get. There were some fairly immediate improvements, but getting back to pre-mesh levels might take some time. I'm taking it slow to allow time for tissue stretching and getting used to the new loads.

                      I'm hesitant to recommend removal in general because I see many different removal procedures being described, from open surgery with triple neurectomy all the way to my procedure, and beyond, using robotics. In my case, it was just a straightforward mesh removal, with no nerves cut, just a very tedious peeling of the mesh from the abdominal wall. But I know that many surgeons cut nerves as a matter of course when they do mesh removal, even the skilled and respected ones. I don't know how they make that decision.

                      Ideally, expertise in mesh removal would become a skill that is shared and discussed widely, just like the skills for mesh implantation are. The robotic surgery trend seems to be promising, and seems so suited to mesh removal that mesh removal might yet become accepted as a normal procedure. Maybe then the mesh problems won't be so quickly discounted.

                      Good luck. Feel free to ask more questions. I've delayed sharing my story because I wasn't sure if it was going to "stick". It's only been 4 months and some days since the second surgery (one side at a time), but things are good so far.

                      Comment


                      • #12
                        Thanks so much for sharing your experience. I Sincerely appreciate it and Iím glad to hear you are doing better after the removal surgery. So you had it done lariscopically when it was implanted and also removed? I saw somewhere here that the way It goes in is the way it must come out? I had mine done open and my first initial consultation from one of the surgeons who do open procedures on the list above said they could likely only get 60 to 90% out. Was that what you heard from your consultations as well? It was So disappointing to hear but I guess itís difficult to get it all since overtime it merges with your wall etc. I am still reaching out to others on the list for multiple opinions.

                        Also, I was wondering what Were your main reasons why you went through with the removal...was it only pain issues or did you experience other symptoms such as feeling sick, intermittent dizziness spells\off-gate\fatigue or episodes of general malaise and rashes that would come and go? Thanks again for your reply.

                        Comment


                        • #13
                          Hi just thought Iíd respond too. I had my mesh removed by dr. Igor Belyanski last summer. It was implanted laparoscopically and removed same way but robotic assisted. One advantage of robotic surgery is the camera is 3D which can give a clearer view of the structures. It also allowed the the instruments to move 360 degrees which the human hands just canít do. However, like any inter surgery it really comes down to the skill and experience of the surgeon and not the technique.
                          i also had zero nerves cut (nerectomied ) and Iíd be very hesitant with surgeons who seem to do these neurectomeis along with the removals even if there isnít a reason to (ie merves caugh up in the mesh) the neurectomies can be hit or miss.and sometimes cause more pain. I also think it can possibly be an indicator of the surgeons lack of confidence in the removal of they automatically cut the nerves.
                          Id also be wary of a surgeon who is only saying he can probably get only so much mesh out before he Ben goes in-the goal should to be get it all out and leave as little as possible behind of it is on structures deemed to risky to remove. I had 90% of my mesh removed some chards were left on the spermatic cord, and illiac vein and artery.
                          im on a mesh forum and there have been 4 guys since me to get there mesh out and including me 6 guys in total (this is just from the forum bekyanski has removed many others). 4 out of the 6 the mesh was removed 100% and two 90%. Two of the guys had their mesh removed open as this is how it was placed and 100% was moved none of the patients had any of their nerves cut.
                          im finishing up 7 months. Iím about 90% better.
                          some issues resolved others are still there to some degree. I can work and be with my family doing family things which wasnít the case before removal. Iíve been told itís a journey by others and that the 6 month and year mark are important land marks in the recovery. It seems a lot of people donít get back to 100% but are glad they got the mesh removed and a lot report 90-95% better.
                          ofcourse it is patient dependent and depends on many variables. Like good intentions when my mesh was removed there were no hernias present . This seems to be more the case with laparoscopic implantation and less so with open removals so you will need to plan out if there is a hernia how it will be repaired. If you are like most of us there is probably no at you want mesh to be reimplanted so it is important that the removal surgeon is confident he can do a pure tissue repair.
                          but to me Iíd consider it a red flag if the surgeon is already saying he might only be able to get 65% out.
                          After doing my research for me it came down to see. Belyanski or Bruce Ramshaw. Both meant I would have to travel. Definitely speak to 2 or 3 of the top removal surgeons and be willing to travelsend you scans and operative reports for their review. Iíd avoid going to a local surgeon just to stay local. Iíve heard some guys accounts who went to local surgeons for removal only to Ha e a small % of the mesh removed, some said it was too dangerous and other said they couldnít remove any.
                          step was is to get as much of the mesh out and as safely as possible! Best wishes.

                          Comment


                          • #14
                            Hi Jnomesh, Thank you for the reply and all the good information. I actually have an appointment coming up with Belyanksy shortly. He is only about 2 1/2 hour drive from me. So he has done atleast 6 people on this board that you know about or are you referring to a different forum if so what forum? I agree If Iím going to go through with this I want to go with the highest skilled surgeon for my case who can get as close to 100% safely out as possible.

                            A question for you and the others who opted for mesh removal was it mainly due to pain that you opted to remove it or were there other symptoms involved like feelings of sickness dizziness rashes when the pain in the hernia area was throbbing and most noticeable?

                            Comment


                            • #15
                              And if you experience these other symptoms did they resolve after the surgery?

                              Comment

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