Mesh pain and discomfort that comes and goes

[ajm222]

Yeah, doing a bilateral removal would also have me very cautious about removal. Of course, Good Intentions can speak to that. I believe he had both done but in separate operations?

I really think the outcomes are dependent on a lot of factors, but factors we sort of understand to some degree now. In my case, I had robotic mesh, and the removal would be robotic, and it’s only on one side, and I have no real nerve involvement. And it would be performed by someone who does 3-4 removals a week and has a reputation for being an expert with the robot. No guarantees but I believe this greatly improves my chances at a positive outcome, compared to those with nerve issues and particularly those who need to have open removal.

Most of the folks with bad results seem to have started off pretty bad and also had open removals that were often done by surgeons that don’t often do removals. I think every case is very different and that makes it tough to predict.

I’ve certainly seen a number of very positive stories here, and I think there are many more we don’t see – people that don’t post on here or on FB group pages for the ‘mesh injured’.

Also, I know in my case the mesh issues haven’t gotten worse. They’ve actually gotten better. But the foreign body sensation is still there. And I worry about flares. And I worry about the several years of lots of discomfort. So it’s even harder to decide now. But I really want to see how things would be with the mesh removed. And I think my chances are good. But it’s still risky obviously. And I do worry much re-herniating. But Jnomesh and Good and others haven’t had that problem, amazingly.

[dh305]

I would love to know how many people percentage-wise truly fully recover after mesh removal. Obviously, those on this forum for the most part had a terrible outcome from their surgery, and thinking of doing another one to undo it is a very scary proposition to say the least. Especially when it seems lots of people had no benefit from removal of mesh or end up being worse off

[Good intentions]

There are insidious side effects to the mesh pain. You might eventually realize that you’ve been getting weaker and less healthy because you’ve been less active, to avoid the pain. If you try to become more active to get your overall fitness back you might find that the pain grows with the activity level. That is the bind that causes people to have mesh removed, I think. Either accept a weakened, less healthy life, or get the mesh out and hope that your body recovers.

The recovery from mesh removal does take a long time. The patient’s body has adjusted to the mesh for as long as it’s been there and now must readjust to having it gone. Mine has been out for just over three years and I still feel twinges and swollen feelings sometimes, but overall my activity potential is back to normal. Even the small mesh fragment that was left seems to have settled in, it doesn’t get sore as much as it used to. And, no new or recurring hernias.

I think that longer it is in there the longer it will take to normalize after it’s removed. It makes sense. But only the person with the mesh can tell which way things are going. It’s a difficult decision. Take an assessment or where you are physically and where you want to be and evaluate whether things are stable or getting worse.

• This reply was modified 3 years, 10 months ago by  Good intentions.

[dh305]

Dr Yunis wanted me to get a CT scan before really opining. However, I got freaked out over the CT scan before my appointment because I’ve already had one in the pelvis and two in the abdomen already. Concerned about excess radiation. I probably will get the scans. Problem
Is I have mesh on both sides and it’s over 3 hour procedure. That to me seems crazy if I’m not in true pain. Its like I said more discomfort and gets sore being on my feet a lot. But it always subsides with rest. If I was really in pain my decision would be much easier.

[ajm222]

Yeah, it’s a tough position to be in. What did Yunis recommend? I think in my case I’ve gotten to a similar point in the last month or two where it’s still there but it’s not bothering my psychologically as much. And the main thing that was bugging me (weird discomfort in lower abdomen has finished a lot). But I’m also worried any day it’ll ‘flare’ – and anything that bothered me this much for three years and is still noticeable should still possibly be dealt with regardless. It’s a big surgery with lots of possible complications, but the top removal surgeons should minimize the risks substantially. I had tentatively scheduled surgery again for late Jan but it was cancelled because of Covid. Expect to hear something from them again early next month. Still considering it. I also worry about job loss of insurance changes and then being stuck.

[dh305]

I hear you. My situation almost mirrors your situation to a tee. Pain level about the same, but always there. The doctors call it more of an “annoyance“ then pain. I met Dr Yunis, mainly because of the reviews. I don’t know, with the level of discomfort I have, mesh removal seems like killing a flea with a bazooka gun. Seems like a very involved procedure, no matter how skilled the surgeon is with the robotics. I am about 18 months in to this, and I am giving it more time. I am back to exercising and light jogging. The discomfort seems to be more cumulative on active days with flare ups more towards the end of the day. Oddly enough, when I am exercising there is really no discomfort. Good luck with your decision.

[ajm222]

Ah, that’s right. Now I remember your situation. In my case, my problems started kind of from the beginning, in terms of the soreness. The worst of the foreign body sensation in my lower abdomen didn’t really start until a few months after surgery, though. But I have heard that is often the case – as the body kind of deals with the mesh and incorporating it and scarring around it, it can take a few months before it starts pulling on things or folding.

My case was also a bit unusual in that my pain and discomfort weren’t substantial. The soreness from the initial surgery was never great, but it just kind of lingered. I suppose one could argue that perhaps by overly focusing on the surgery, I may have healed but prevented my body and mind from letting go of the pain. But if it were just the pain and not the foreign body stuff and heaviness on my right side, I probably would be ok with the soreness. All together, I feel the mesh has just been a problem.

But I have to accept that I will always be in a weird place where it’s not so bad that the decision will ever be cut and dry. When things flare up, I do get close to 100% certainty, but that just never lasts more than a week or so, and I always wonder if it will be the last time or if I can control it to some extent. Very frustrating, but clearly you know what that’s like as well.

Anyway, thanks for your responses. Hope things continue to improve for you. I will certainly let you know if I ever end up going through with this surgery. Another one scheduled again for late January. With my luck I’ll finally decide to do it and it’ll be cancelled because of the pandemic 🙂

[mitchtom6]

Dr B gave me the full rundown as to what to expect. He didn’t recommend the mesh removal outright, and suggested that I give it a little more time before committing, as I recall (this was about 1 – 1.5 years ago). He said my case was somewhat unusual, in that the issues started several years after the initial surgery. He said that a typical patient requiring mesh removal has had issues from the very beginning. At the time of my visit, I think I had been experiencing groin pain for about 8 months or so, affecting everyday life. The theory was that something had “sheared” in my groin. He laid out the pros and cons and gave me plenty to think about.

My chief complaint was a point tenderness/sore spot on the right side of my pubic bone. The onset was sudden, after crossing my legs one night, about 5 years after my initial mesh repair.

I had also been evaluated from a handful of other docs, some of the “big names” who suspected the issue was mesh related.

It wasn’t until maybe 6 months later that I got a cortisone shot from my local doc. Worked great, and was quick, easy, immediate relief. Not too expensive, either. I would absolutely suggest trying it first. To your point, I do not know how it would affect foreign body sensation since I have not contended with that. Take care and best of luck.

[ajm222]

Thank you for the comments, and same to you!

What did Dr. B end up suggesting?

I think in my case that while the soreness comes and goes, the foreign body sensations likely won’t go away even with therapies like shots or whatever. Maybe I’m wrong, but Dr. B also confirmed that they aren’t likely to be permanent or help that much. Perhaps it’s possible, though. I’m glad you had such relief for so long with the cortisone. I suspect my issues are higher level inflammation causing the soreness, and maybe the mesh folding or pulling on something to give the foreign body sensation. Imaging shows nothing and I have had it all (ultrasound, CT, MRI).

When I am less stressed and preoccupied with other things, It’s not too bad. Still there, but I’m closer to a 1 or 2 out of 10 in terms of pain and discomfort. Makes me wonder how much is caused by tension in the area and psychology. But then when I am stressed and it’s flaring, it’s more like a 5 or 6 out of 10. Maybe more.

Ugh.

[mitchtom6]

Good luck AJM….I’ve seen your posts over the years. Similar case here, and I have also had a consultation w/ Dr B. I’m in my lower 30’s.

I will say, I felt remarkably better after a Cortisone shot, which alleviated my pain for nearly 6 months – nearly completely. But, it is back now and has been a nuisance every since Thanksgiving. I would suggest that you, at least, try the injection first if you haven’t already. I may end up getting another one and hoping for similar results. I share your concern about the long-term effects of the mesh…..will the passage of time make things better, or worse? It’s a tough place to be, and few fully understand. But you’re not alone! Take care, and hoping for the best.

[ajm222]

Forgot to mention that my surgical plan is to simply remove the mesh and do nothing else, hoping the scar tissue will hold things in. If it doesn’t, then I can get a tissue repair via the open method at some point down the road. I had my mesh inserted robotically, and it would be removed the same way, which means it’s highly unlikely any major nerves would need to be cut. Fortunately I also am not an athlete and I’m in my mid-40’s, so I just want to get back to living without pain or discomfort and be able to do light to moderate exercise without issue.

[ajm222]

Hey Peter –

Thanks for the advice! Yeah, that’s the other thing messing with my head – knowing that surgery isn’t guaranteed to improve things, and could potentially make them much worse. Or it could change my life for the better. Dr. Belyansky is my surgeon. I have confidence in him. But I know that even he would admit nothing is guaranteed when it comes to something like mesh removal. I am definitely approaching this with huge amounts of caution. On the one hand I can’t discount almost three years of regular on and off discomfort. On the other hand, at the moment it isn’t bothering me much. But I suspect if I call and tell them I’m not ready still, I will likely have a flare up. Always makes me wonder how much is in my head. And I wonder if slowly over time things will get better and better as I get older, and maybe eventually I’ll mostly feel ok and learn to live with whatever mild symptoms remain. Or if the mesh is a ticking time bomb.

Not a great position to be in. But I know you can sympathize. I hope you get your issues sorted out at least to the point that you can feel more normal.

Thanks

[PeterC]

@ajm222 check out Dr. Jonathan Yunis if you haven’t, he seriously has triple the combined positive reviews of all the doctors mentioned on here – I can’t find a single person who has a bad thing to say about him and does telemedicine consults for literally 1/5th of the price.

[PeterC]

I feel you. The #1 reason some of us end up getting surgery is because we can’t take the back and forth anymore it really messes with your head and we tell ourselves ”if its going to be like this and never completely resolve on its own might as well get it fixed”.

But how many people can you find that were actually fixed after? When I finally said I’d get surgery done, I was told my left side (that had no previous surgery) would recover in 6 weeks and my right side that had a superficial mesh removed would be fine in 3 months. I read your post and I feel for you because I felt the exact same way so many times and now 10 months since surgery I can’t take a walk comfortably and I’m on the verge of ending my life because of how I feel since Dr. Brown’s surgery where ”I was the perfect candidate” and not a single person cares. Not a single person. It’s business as usual for them.

Its not meant to scare you but just know that its always a possibility that you walk out of a surgery and feel worse and seriously impaired. Just be careful with your choice of surgeon and make sure that once you make that decision you make it for yourself, not out of desperation.

Wish you all the best I really do.

• This reply was modified 3 years, 10 months ago by  PeterC.