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

[Jnomesh]

Best wishes on this most unfortunate journey

[Khernia11]

I can’t thank you all enough for your stories and advise. You have given me an honest and great starting point to continue researching removing my mesh. I am anxious but hopeful. I have joined a number of the popular Facebook mesh groups now including the one above to learn more about removal as I wait to consult with the specialists on the list. I will update my story as it moves forward and look to give back like you all have done. Best to you both on your continuing recoveries!

[Jnomesh]

Hi. The name of the mesh Facebook forum I am on is called fighters and survivors of all transvaginal and hernia mesh. I’m pretty sure it is a closed group but you can be invited on.
for me I ended up choosing dr. Belyanski for ancoilme if reasons
1) there was a member on the group who had his mesh removed by Belyanski and he got 100% out with no nerves cut
2) I was able to view a lot of dr. Belyanski s removals in you tube and there was something very percise, exact and in a weird way gentle about the removals. I saw some other surgeons removals and they just looked “rough”
3) Ramshaw had a long waiting time just to be seen
4) Belyanski diagnosed what was wrong with me as he saw definitively on my cat scan that my mesh had shifted and folded-this was huge as I knew I wasn’t crazy after all
5) when my wife and I met with him we were very impressed and he took the time to talk in depth with us we both left feeling he was the guy to do the operation
6) a cherry on the Sunday was that Belyanski was only a 3-4 hour drive from me and I had relatives out in Maryland. I liked this as I felt if I ever needed to go back it was just a drive away

of you you end up getting mesh removal remember the first step is to get it out safe and as much as possible without a bias to cut the nerves.
there are some removal surgeons that have a impetus to cut the nerves along with removal which in my opinion should be avoided. If some of the nerves have to be cut because they are fought up in the mesh them so be it but they shouldn’t automatically be cut. Some guys have severe issues once they are cut others do ok.
also you should know going in that just Bc you get the mesh removed it isn’t guaranteed that you will be 100%. Quite the contrary most of the guys o correspond with are about 90% better and are glad they got it removed. They alll including me still have some amount of pain or issues. We are all under a year in our recovery (me 7 months) and I’ve heard many people mention it is a process and for some healing continues well past the repair mark.
the other thing you will want to keep in mind no matter who you choose is to have a back up plan should you need a hernia realized post removal.
for many especially for lapro inserted and lapro removals the hernia defect is filled in from scar tissue and there is no repair needed.
i had a plan with dr. Bekyanski that should there be a hernia he after removal would would repair the hernia with sutures from a open approach .
i know dr. Shirwin Towfigh in LA is perfecting a laparoscopic repair.
also be prepared that you find any definitive approach or info on what to do post removal. For example, how long to rest, should you do PT or not and if so when should you start. It really is the wild Wild West when it comes to mesh problems, mesh removal, and mesh removal recovery.

[Good intentions]

quote Khernia11:

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?

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.

I had mine implanted via TEP, but removed via TAPP. I’m not so sure that the procedures need to match for removal. TAPP is essentially like open just from the other side of the abdominal wall so if the mesh is a patch that was placed between the peritoneum and the fascia, it should be accessible via TAPP. But I’m not a doctor. TEP is a very specific procedure, to split the layers apart but leave them intact. I think that TAPP might be the preferred removal method, because they can see all of the abdominal wall, through the peritoneum, before they start removing, and they don’t have to cut through muscle or fascia to get to the mesh, just the peritoneum.

I had mine removed because things were getting worse, not better, and I couldn’t imagine spending the rest of my life like that. I was withdrawing from doing the things that I like to do. Spending all of my time managing my condition. It’s what I imagine people with cancer or colostomies or diabetes have to deal with. After being very healthy for many years I gained much empathy for people with chronic conditions, but I felt obligated to try and get out of it, since I have way too many years left to just wait for death.

I did not have any shooting nerve pain, or dizziness, or malaise, just the mesh hindering any attempts to lead an active life. It was like a prison.

Good luck. I seriously recommend that you don’t make your choice based on convenience or cost, unless you have to. As you can see from even very recent posts, surgeons who have been doing things a certain way for many years will generally just keep doing them that way. They’re not keeping up. Just like people are still getting mesh implanted that will cause them problems two or three or five years from now, there are surgeons who think that leaving 30% of the mesh inside is pretty good.

I had broken out my old German language books and was studying up to make a trip to see Dr. Muschawek in Germany, in parallel with talking to people in the states, while exploring my options. I had even called Dr. Petersen’s office down in Las Vegas and had the details needed to travel down there and have the open procedure done. But after talking to Dr. Billing I chose him, because he was very sincere, confident, and had the experience. Dr. Billing has been removing mesh for about eight years. From what I’ve read, Dr. Towfigh, Dr. Belyansky, and Dr. Billing use similar methods, TAPP, except that the first two might use robotics. Dr. Billing does not. The procedure is very time intensive, so I needed two surgeries, one for each side. I’m still not clear about the need for neurectomies, which might be another difference, and should be discussed.

[Khernia11]

Jnomesh, thanks for sharing. Can anyone join that Facebook forum, can you share the name to search for? I am looking for as many experiences as possible for open direct inguinal mesh removal from the specialist list at the top of this thread especially Belyansky since he is close to me and in my network as well as Ramshaw. Curious, in the end what made you decide on Belyansky over Ramshaw? They both do robotic mesh removals and are at on a short list of specialists in this area from what I gather on this site…Thanks in advance for your thoughts. I really appreciate you and Good intentions feedback and of course Towfigh for putting this site up as I have felt so alone and shunned the past couple years with these issues with doctors just telling you to take advil and live with it because nothing shows up in any test they run and you know something is not right and it all points back to the discomfort\pain etc, in the mesh area…

[Jnomesh]

The other guys I was referring to are from a Facebook mesh forum. For me I had discomfort post my mesh implantation which was now almost 7 years ago. It felt there was something he’s y stuck in there and in addition to this feeling there would’ve these flare ups a couple of times a year that would be really painful a lot of burning etc. I would go back to the implanting surgeon and my GP and get tests MRI etc and all would come back fine-so I just went on living life the best I could. Then last year something happened that was the most painful experience I had ever had like something was ripping inside me-incredible burning pain leg feeling like lava was running down it. I’m. Addition a few months later I fought a bad cough and felt sweillknf i my stomach it was like I had a heavy brick in it. So I had this burning pain in my groin and thigh and heaviness in the abdomen-again all tests MRI and cat scans came back normal. That’s when I joined the Facebook group and learned of dr. Bekyanski o sent him my cat scan and he found that the mesh had shifted and looked to be folded. It was a godsend finally a answer after all these years-the damn mesh.
since the removal the heavy sick feeling of something stuck in my stomach is gone. I k or longer feel sick. However, I still have some issues when I sit on which I get some burning in my thigh still. Not sure if it is scar tissue or some permanent t nerve damage but am remaining hopeful that with Rome it will continue to improve

[Khernia11]

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

[Khernia11]

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 I’m 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?

[Jnomesh]

Hi just thought I’d 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 can’t 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 I’d be very hesitant with surgeons who seem to do these neurectomeis along with the removals even if there isn’t 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. I’m 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 wasn’t the case before removal. I’ve been told it’s 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 don’t 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 I’d 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. I’d avoid going to a local surgeon just to stay local. I’ve 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 couldn’t remove any.
step was is to get as much of the mesh out and as safely as possible! Best wishes.

[Khernia11]

Thanks so much for sharing your experience. I Sincerely appreciate it and I’m 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 it’s 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.

[Good intentions]

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.

[Khernia11]

Good intentions, “Recurrence is the measure of success, not quality of life” you hit it on the head right there I couldn’t agree with you more. Not a day goes by the past seven years where I don’t 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 you’re correct the medical community pushes the “ultimate” fix on the doctors nowadays to make money and without long term testing and in many cases fast tracking the approval if it’s 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 isn’t that bad but the discomfort impacts your life…Are these people part of the numbers that you see in literature. Well I’ve never been contacted by anyone to ask how I’m 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 Don’t mind sharing, I have a few questions for you. Did you have open or lariscopic inguinal mesh removal? We’re 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.

[SomeGreyBIoke]

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.

[Good intentions]

quote SomeGreyBIoke:

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.

[SomeGreyBIoke]

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 🙂

[Khernia11]

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!

[SomeGreyBIoke]

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

[Khernia11]

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 “Dynamic MRI anterior pelvis with valsalva without contrast” 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 I’m 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 I’m not in extreme pain fortunately so have some time to research but I am dealing with these reoccurring issues. It doesn’t stop my daily activity but it definitely affects my quality of life in too many ways now. Thank you again for Everyone’s input and compassion it is humbly appreciated!

[Good intentions]

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.

[Chaunce1234]

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.