[ajm222]

Quick update. Saw Belyanksy again. Seems it might have been a false alarm somehow. Felt what he thinks is perhaps a small lipoma maybe upon coughing but not like a full-on hernia, and something so minor he said don’t do anything unless it’s totally bothering me. And if he did need to do anything, it would only require a smaller incision and some stitching to deal with the lipoma and close and tighten things up, but not totally opening up and fixing the entire inguinal canal. And I don’t think any of my issues are coming from there. So a relief for now.

[ajm222]

@MarkT Directly from the patient coordinator at Shouldice. I contacted them. The 2-3 years is for cases requiring general anesthesia. They just rarely do that. “2 per week, but demand for outweighs their resources.” Because I had mesh removal, they said it would probably need to be under GA. They stated specifically that at the moment “wait time for GA surgery is 22 months and the wait time for a consultation appointment is currently 2-3 months.”

[ajm222]

FYI – Shouldice is a 2-3 month wait just for a consultation. Then surgery would be another wait. If you need general anesthesia, like they suggested I might because of ‘all the damage from mesh removal,’ it’s a 2-3 YEAR wait for surgery. I do think I could convince them to do mine without GA.

[ajm222]

That’s very good to know, thank you for checking with him! I would still very much be open to getting a follow-up surgery with him if at all possible.

[ajm222]

Hi didn’t say. And I don’t know enough about the procedure. But he got back to me again later and basically just copied Michael Rosen from the Cleveland Clinic on the email and suggested the two of us connect. Will see if he chimes in.

I need to verify this is definitely a recurrence, and the nature of it, and find out the size, and speak to several surgeons and see what they all suggest I do.

[ajm222]

Very interesting, thanks. I didn’t see anywhere that they discussed how
much participants drank, and they seemed to suggest much more study was needed, but I do think this was consistent with some other stuff I read (though this is more scientific).

[ajm222]

FYI – I reached out to Dr Ponsky this morning and he immediately responded, saying he can’t do the procedure himself because he works at a children’s hospital, but he is going to look into finding someone nearby who he could help do the procedure, which I thought was interesting. He said it may work very well for me. Obviously I’d be super nervous about someone doing this exact procedure for the first time on me. Doesn’t seem like a great idea. But I’ll see what else he says. I also don’t know about going back in laparoscopically after mesh placement and removal. Seemed like an open tissue repair might be more ideal.

[ajm222]

Thanks, will do.

[ajm222]

And another recurrence after this would be very bad. Would probably have to go back to mesh and just deal with it.

[ajm222]

Thanks. I did ask, and he didn’t really have a lot of recommendations for tissue surgeons. While I know he’s great with the robot, I know he’s also an experienced abdominal wall reconstruction surgeon, and must do a fair amount of tissue repair even if it’s not always for inguinal hernias. while it’s probably mostly robotic, I’m sure he’s got plenty of experience with tissue and an excellent knowledge of all of the relevant anatomy. But I’ll definitely get details. When I go back up I’m going to get all the details as well on the method he uses for open inguinal repair, and if it’s also done under general.

I do remember surgeons saying running and walking and most exercises don’t really worsen the chances for a hernia or make an existing hernia worse, but I do wonder if after mesh removal basically anything could stress a very weak area like that. Perhaps after an adequate tissue repair it’ll been safe, though I think my running days are over. Will likely stick to walking or swimming or something.

I’ve had regular pain and soreness since removal and I’m wondering if finally getting another repair might help with that. I pray it doesn’t make things worse. Though at this point I’ve very little in the way of positive expectations.

[ajm222]

To add to this, I found out today Sbayi is leaving his current place of employment. Don’t have any more info but was told he’s not taking patients and leaving Stonybrook.

[ajm222]

David – my original hernia was indirect. I think it wasn’t particularly large, though I did have a noticeable bulge that I can push back in at times. My BMI is right at the border of normal and overwieight but only because I am especially dense and have a fair amount of muscle. The BMI stuff doesn’t really apply well to me. I look very thin.

[ajm222]

i’ve talked to some reputable surgeons since the mesh surgery including Belyansky, my removal surgeon, and they all suggested that at my age at the time of surgery (41) and with my athletic and thin body type, i probably should have always been steered toward open tissue repair. most of them think mesh is fine, but in hindsight open tissue repair should have worked perfectly well for me.

[ajm222]

I do still have issues and they are similar to before the mesh was removed, but they are better. less of the tightness. i am glad so far that i had it removed. i have not yet (after a year and a half) ‘gotten back to normal.’ but i am better in some important ways. i am very active. i am hoping in a few years there will be more improvement that i see. psychologically it was also good to get it out.

i will add that recovery from any surgery takes a decent amount of time, and folks just a few days or weeks out from mesh surgery really aren’t going to know how they will fair ultimately for quite some time. though i had moderate discomfort and pain from the beginning that just never fully subsided, and then eventually the tightness and discomfort got worse and i started having some other issues. i was never in severe pain or discomfort.

[ajm222]

hey guys –

yeah, so I did reach out to a bunch of people and got mixed messages. Next door neighbor had three hernia surgeries and is totally fine. Only issue he had was the first open repair he got while in the army failed and he had it replaced with mesh, and then he got another mesh on the other side later. Had the usual stuff he said over a period of a year or more (occasional pulling or tugging sensations here and there) but nothing bad. Totally fine now. he did find the open surgery easier. lap was just really uncomfortable for him. same for me.

another guy had double mesh surgery and is totally fine. he also didn’t love the feeling he had a few days or a week after robotic surgery. but he recovered fine.

a third guy had mesh put in while in the army and always had some issues and then went in for a revision a few years later. that resulted in a month of almost being unable to go anywhere and he basically was housebound. nerve related issues. but those resolved and he claims to be fine now. i think they left the mesh in and maybe put more in and made some adjustments or something. he doesn’t even know. he didn’t ask. just said he was uncomfortable and went back into surgery as doctor recommended and he says he’s all better now.

last guy, older, had mesh many years ago and says it’s always been a tad off but doesn’t impact him too much. occasional discomfort but minor, and sometimes when bladder gets full he’s a little uncomfortable.

and then i have a friend who said her ex-boyfriend had mesh surgery and was always complaining about it. that’s second hand info for me.

none of these folks really recommended anything one way or another – they were just sharing their experiences. but i did find that when probed for more information occasionally you’d get that thing where they said everything was fine but then when pushed a little harder, they’d say something like ‘well, yeah, once in a while such and such is sore, or i have this minor discomfort, etc etc’. But most ultimately wound up satisfied to the extent I never heard them complain about it and they never did anything further about any issues mentioned. and when you reach a certain age i think there are always some aches and pains you can’t really determine the source of, so a lot of minor issues become white noise.

so i do think it probably works fine for the vast majority. i was definitely not in that category. but to this day i’ve still never understood why – if it was truly a mesh issue or if i have some extreme pain sensitivity or psychological issue. it’s all very confusing. but ultimately i did need mine removed because i wasn’t able to overcome the discomfort i was dealing with.

logically, i have no idea why implants work at all and don’t result in constant problems for everyone. you’re sticking some artificial material inside a body that doesn’t want anything foreign there, and will at some level always mount a response. and healthy tissue and nerves and stuff grows in and around the material. and we’re told not to drink out of certain types of plastic bottles to avoid microscopic exposure to the stuff, but then the gold standard for a hernia is to jam a large mesh piece of it into a body cavity that experiences tons of flex and constant movement and is surrounded by lots of important structures. and somehow this thing is supposed to stay in the right spot after surgery for long enough to result in a nice clean patch repair. meanwhile the implant itself shrinks and has no ability to be particularly flexible over time. it’s just wild.

so was the mesh an issue for me? or did i make it into an issue with worry? would i have been fine if i avoided this forum and done zero research before surgery and just trusted the doctor that it was no big deal? or am i gaslighting myself thinking that? no clue. pain and discomfort very complex. people with totally messed up spines are out there walking around with no pain at all, and people with perfect spines and effectively disabled, and no one truly understands why. there are people with total body pain and fibromyalgia and we don’t understand that either because on exam everything seems fine. there are days i have very little pain and other days where i have a decent amount. i can make the pain almost appear (or disappear) out of nowhere at times if i think about it, and then other times when i am relaxed it will be there. stress seems to make it worse, but not always. exercise sometimes makes it worse, sometimes better.

it’s a mystery.

[ajm222]

Hey Ben –

Thanks for this. It’s a great update. It’s also very interesting as it partially speaks to the aspect of all of this related to the very nature and perception of pain. I had removal in Feb. of last year (2021) and still have some soreness and discomfort, though it is better than it was before removal and I think is improving a bit with time. I am hopeful that over the years the pain will continue to improve ever so glacially. I am not taking any medication for it, though had considered at various points going back on an SSRI, which would likely speed things up, possibly dramatically. I’ve had physical issues in the past that largely resolved simply because I either started taking an SSRI or dealt with anxiety and PTSD type symptoms with therapy. I’ve also had physical issues in the past that were symptomatic for a VERY long time (over a decade) and then just resolved themselves completely. So I think to some degree it’s possible to have pain in varying degrees in the absence of any structural problems. It’s more of a neuropathic signaling issue than an actual structural issue. There are some pain experts that would agree and point out that most physical damage will heal itself adequately fairly quickly, and normally after resolution the pain should also go away. But in some individuals that just doesn’t happen and the pain itself continues to persist. Those pain pathways just don’t turn off the way they should when the body heals, and that should largely be the focus of any therapy.

Anyway, glad to see you back and hear you are doing well.

[ajm222]

Thanks, and I agree. All that makes sense.

[ajm222]

That’s wonderful news, and thanks so much for another update. Also great to hear that the scar tissue is holding. Funny you posted this today as I just made a follow-up appt with my removal surgeon (Belyansky) just to have him take a look and see if he thought it was worth doing some imaging for good measure.

I am now one year and four months post removal (Feb. ’21) and generally doing pretty well. I run 5-6 days per week and do lots of heavy yard work etc. I started running again about a month or month and a half after removal, and picked up all my regular activities shortly after removal. No apparent recurrence either as far as I know. Just trying to live life and do more and more.

Unfortunately I do still have some soreness and mild tightness at the removal spot and some other strange sensations that were present before removal along my whole right side. But all of those things are better now than with the mesh and I am hopeful they will continue to improve at a snail’s pace, though at this point I’ve also come to terms with the possibility that progress won’t go any further. Which is fine most of the time, though occasionally it will get me down for brief periods when I wonder what it would be like to be totally back to normal. But your post here and some others I have spoken with suggest that improvement can continue for years. It’s really a very individual thing.

The area of removal on my right is puffier than the left, and I’d swear that it gets even puffier after intense exercise. So I want to make sure there isn’t any sort of encapsulated seroma or anything in that area. I’ve had occasional setbacks where I will feel an intensifying of my symptoms for a week or more at a time but then it always gets better again, and then often I’ll see some additional improvement afterward.

Anyway, glad to hear things are ‘back to normal’. I am hoping one day I can say the same. I assume your improvement was very slow and gradual over this entire time?

[ajm222]

Sure thing. And certainly people have issues. Most people here suspect it happens a lot more than advertised. But it’s hard to say for sure. We’re all flying a bit blind. You definitely get a sense that mesh is terrible if you spend all your time looking here and in Facebook groups reading stories about problems. There’s no good way to survey the hundreds of thousands or even millions worldwide who supposedly get the surgery and don’t have issues. We’re kind of extrapolating here from a very small population out to the entire world of hernia mesh repairs. No good scientific way to do that, I don’t think. There are studies and things to help triangulate and make assumptions. But not a clear picture. The vast majority may be fine. Or perhaps many of them may have small or moderate issues they just live with. Who really knows. My neighbor has had two mesh repairs. No issues after a decade at least. Another good friend is the same. A third friend did have major issues but had another surgery and seems to be fine now. And a fourth friend has very minor discomfort from time to time but is mostly fine. Lots of people on exercise forums that I discovered has mesh repair 10-20 years ago and totally forgot about it. So they’re fine as well. My mesh was removed for nonspecific pain and discomfort, so I certainly don’t have great things to say about it. But it apparently had not been wrapped up or involved with any major nerves or other critical structures after 3 years. And I’ll never likely know why I had problems. Could have been more than just the mesh creating those issues, including the robotic surgery itself and unique factors involving my own body and mind. It’s a mystery. But regardless, mesh was created because there were some issues with tissue repairs. Most of the time it seems mesh is fine, but it also has issues. I think the one conclusion we can agree on is that hernias are more complicated than advertised, and the fixes are imperfect but the best that medicine has to offer. They have to be repaired eventually in most cases and you just have to hope that whatever repair method you choose works for you. Usually it does. But not always. Such is life. If it doesn’t work out, find a way to fix the situation. There are options out there is tissue repairs don’t work, and there are options out there if mesh doesn’t work.

[ajm222]

Directly from the patient coordinator at Shouldice. I contacted them. The 2-3 years is for cases requiring general anesthesia. They just rarely do that. “2 per week, but demand for outweighs their resources.” Because I had mesh removal, they said it would probably need to be under GA. They stated specifically that at the moment “wait time for GA surgery is 22 months and the wait time for a consultation appointment is currently 2-3 months.”