Some random comments re: mesh removal + forum critique

Hernia Discussion Forums Hernia Discussion Some random comments re: mesh removal + forum critique

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    • #21198
      ajm222
      Participant

      First, just wanted to add some things I learned when having a follow-up appt with a surgeon associated with this board. I met with him because I am still tormented trying to decide whether to have my mesh removed. I have communicated with him a lot via email and finally wanted to chat with him in person.

      He basically told me that after a few months of exchanging emails he kind of guessed I’d end up going down the removal path. He didn’t want to say so at the time because he said you never really know for sure how things will end up with any one person, but he wasn’t surprised, and he said he thought it probably needed to come out, even though I am not currently in much pain. I guess if people are struggling after several months or so, improvement more often than not tends to be fairly modest after that, though I’m sure still totally possible. But those are my words and my assessment so take it with a grain of salt if you’re struggling after several months or a year. You may very well improve. I don’t have the data to back any of this up, but I do know a few surgeons now have suggested that while some uncomfortable sensations or twinges here and there can last a long time, successful mesh patients tend to be mostly good to go after a few months, or perhaps a year on the long end. my neighbor said it took about 18 months for total improvement for him, but i think his lingering issues were only occasional and not constant.

      This is another reason I kind of want mine out – 2 years of pretty consistent issues makes me think that long-term, rather than getting better and better, I might be at some risk for things actually becoming worse at some point if I overdo it or as I age. I’ve seen too many stories of folks who had minor issues for a very long time that they learned to live with and then something happened and things went south. That hanging over my head concerns me and might be worth the peace of mind to have it taken out. He did say that I should expect things to flare from time to time and maybe have days where I’m a little more sore than others, which I thought was an interesting comment. Maybe that’s true of any implant. He also said no one really knows what happens with mesh after 30 or 40 years inside someone. I guess this is obvious as they really haven’t been able to study it in that way. I think the assumption is that things should be fine. But I also know the body changes quite a bit over the years. And maybe while I am young-ish it would be best to deal with this now. I could certainly end up having issues as I age as a result of having the mesh removed, too. So it’s a lot to consider.

      He also mentioned that the medical community is indeed coming around to the understanding that mesh isn’t quite the benign stuff it has been advertised as. This is not to say it’s bad for everyone, just that they see more people over time with a variety of issues. I still think most do well with it, and it certainly decreases recurrences, which is important. But if you’re having issues, it’s likely not all in your head. Most people probably already know this, but for someone like me who is now mostly absent pain and just has some tightness, it’s easy to think you’re just crazy. I’ve spoken to several friends who have had hernia mesh surgeries and the variety of experiences is quite interesting. Most ultimately are doing very well. But one neighbor has now had three hernia surgeries in total (one without mesh that recurred, and two separate mesh surgeries – both I think on the same side?), one has occasional pain here and there, another friend had a recurrence after open mesh, and yet another had no issues at all after 2 surgeries (one open and one lap). And then there’s me.

      The most helpful thing about this appointment for me personally was his confirmation that the tightness and discomfort I feel in areas well beyond the actual mesh itself isn’t imaginary. He even told me this was a ‘halo’ effect, where you just sense something off in a wide-ranging area that is ultimately originating in fact with the mesh. I had/have fullness almost up near my chest when sitting and down part of my leg and all the way over in my hip. I also sometimes feel like something is pulling at my innards and feels like I have a small sock or something stuffed in my lower right abdominal cavity when lying on my back. He said this can happen as well when the mesh shrinks and just sort of changes shape or position just a bit and/or pulls on some things it’s attached to. And I have some testicular pulling and soreness often.

      He also said that removal in the right hands is safe and that it’s very rare for someone to be worse off afterwards – again, in the right hands, and most preferably using the robot for the most control, particularly if the mesh was originally placed laparoscopically.

      He also said that if I have the mesh removed, I won’t be ‘burning any bridges’ – meaning that I can still most definitely get a hernia repair of some kind down the road if I suffer from a recurrence without the worry that this additional procedure is going to destroy the area to the point that surgery won’t even be an option. This was indeed a bit of a worry for me. It would need to be an open procedure in my case if so, as that area hasn’t been messed with yet.

      I need to decide what to do by mid-next week to avoid a hefty fine for late cancellation. Trying to decide this week but leaning towards removal as I’ve been considering it for so long now, though part of me wonders if I should just delay things while I continue to see how this plays out. I had pain that subsided quite a bit over the last several months, and the tightness while still there for sure seems less distracting at times than it used to (though I still have some mild pain here and there at times, along with the tightness, particularly when I wake up in the morning or after getting up from sitting, and some testicular soreness occasionally). I think some of the pain reduction is related directly to the relief I got when finding a competent person who could help me and possibly remove the mesh. There just never seems to be a good time for something like this. And I’m not thrilled with the unknown and the recovery. But risks should be fairly minimal.

      Also, regarding the forum, just wanted to say:

      1. it’s a real shame all the old private messages are gone. maybe nothing to be done about that.

      2. While we are all super grateful for this place and happy that it’s much more reliable now (correction: after trying to post this it didn’t work and I noticed I was logged out – thankfully I saved it), the user interface is pretty hard to handle. I’ve contributed to a lot of forums and even moderated some, and the UI is just not intuitive. Too much info/space on the right and left, hard to know where to click to even read a private message, and no option to start a new topic near the top which would be helpful. And the layout when using on a mobile phone is even trickier. And honestly I can’t even figure out where to change my password. I had thought most all standard off the shelf forum software was pretty easy to use at this point. I’m surprised one of those popular ones isn’t being used. I’ve never seen any of these issues before anywhere else.

      3. I’d also recommend the HerniaTalk header and the options it contains not necessarily float along with you as you scroll. I understand why maybe it’s done that way, but for me personally it actually makes things more difficult, and it’s really distracting. And sometimes when at work people might not want it to be super obvious what site you’re looking at. Hard to hide when it’s always right there.

      Apologies for the very self-centered post but I thought some of what I’ve recently learned could be useful to someone out there. I also need to get more involved in the hernia facebook pages i’ve joined as the amount of disinformation out there compared to this place is just stunning. Poor people suffering and they don’t know a fraction of the stuff we discuss here and they seem helpless and scared, and many of their queries have very simple and straightforward answers. And it’s sad to see so many considering radical surgeries with some doctors who appear to be out just to make money off of them while leaving them disabled, and no one is warning them to do a little more research. and then there’s the usual slew of ‘all mesh is poison and will ruin your life’ posts that are completely out of context. i guess i was hoping to wait until my issues were in a better place before i started chiming in regularly there.

      anyway, enough for now.

    • #21200
      Alephy
      Participant

      I agree with the new forum user experience!right on spot!

      As a question: do you currently feel better the same or worse than before the originally surgery? If worse or same take the mesh out…my 2 cents

    • #21205
      Good intentions
      Participant

      That was a very thoughtful and informative post ajm22 @ajm222 I’m glad you wrote it.

      I agree that the site needs some tuning to be more useful. The format is definitely odd, and there is a lot of lost communication, that was important to the people involved. I think that dev might have moved on, he is not responding amymore. I have several messages out that have received no acknowledgement. It’s probably difficult to put something together then hear that it is not quite right. Maybe he/she is waiting to make one big reformatting attempt. @dev

    • #21207
      ajm222
      Participant

      thanks. yeah, and Dr. Towfigh also seems to have gone quiet after an initial big push to get this up and running (understandable when your day job is being a very busy surgeon). Hopefully they are in fact working on improvements. Probably no money in it, but the import and amount of activity related to this site would probably make it worthwhile to have a dedicated professional involved for just a month or two to get everything set up properly and running smoothly. maybe they’ve already done that. but then perhaps a couple of regular volunteer moderators could keep an eye on things daily just to deal with spam and things of that nature, and refer major issues when they arise to a contractor or something. not really sure how this works elsewhere. anyway, not any real abuse or spam that i can see going on here anyway so no real need to do any heavy moderating or admin activity.

      To Alephy – same or worse? well, different. but not better. i mean, no lump sticking or popping out. different kind of pain. plus a bunch of other new symptoms. so probably worth giving removal a shot and letting a gifted expert like Dr. Belyansky have a look inside there. whenever i get really freaked out about mesh removal, i remember all my friends who have had multiple surgeries in the groin region already. and they are ok. sometimes it takes a couple of efforts to get things right. and i trust my local dr. and dr. belyanksy, and even drs. brown and towfigh who have also both said removal sounds like a reasonable plan at this point. i never really truly ‘recovered’ from the first one, and i should really accept that that’s not acceptable. and hope for the best when it comes to surgery next month. i’ve certainly done about as much research as I can hope to do at this point.

      my primary worries are testicle loss (as this is the main thing all the surgeons have warned about) and loss of sexual function, and having nerve pain start that i don’t have now. but Dr. Belyansky has never had anyone lose a testicle under his watch, and Dr. Procter said there are several sources of blood supply to the testicle so it shouldn’t be a major concern. i think dr. towfigh also said it would be unusual. and i have two of them anyway. and the nerves and things that manage sexual function are not involved in this surgery. and the fact that i don’t currently have nerve pain should be an excellent indicator that i shouldn’t have any after removal.

      i just know if i pull the trigger i’m going to be completely freaking out the night before and the day of surgery and second guessing myself. i even did that a little bit before the first surgery. this will be much worse psychologically speaking. and the days afterwards are going to be hairy as i deal with pain and the fear that i’ve made a mistake. unless of course i immediately feel the relief that some people feel regarding the absence of that foreign body sensation. if so, maybe i will even welcome some of the pain, as the foreign body sensation and tightness really has been the thing that’s been driving me nuts most of this time.

    • #21208
      Alephy
      Participant

      Definitely take it out! You will be fine and at least you will have one less thing to worry about!

    • #21209
      ajm222
      Participant

      thanks.

      also, i did just manage to change my password. stuff is there, just a little tricky to find.

    • #21516
      drtowfigh
      Keymaster

      Thanks everyone for the input on the site. I encourage you to give me all the feedback that you have so that we can make this a better site.

      • #21752
        Good intentions
        Participant

        I would remove this method of “Reply”ing to a post. The Reply gets lost in the middle of the thread. The other, more common way of allowing a Quote in a Reply, that shows up at the end of the thread works much better. Many people that are following a Topic will start at the end and work back to the last post that they read. They won’t see the Reply in the middle of a long thread.

        I’m sure that it is just a simple setting in the Forum software somewhere. Just a choice of either method.

    • #21677
      ajm222
      Participant

      Just a quick update – I have still be vacillating daily about what to do. I’ve been sending questions to Dr. Belyansky through the app portal, the latest of which asked what the likelihood is that there will in fact be enough scar tissue to hold things in after removal. I had thought this was highly likely, but realize now it may have been too optimistic after doing a little more research. And when I consider I am not in constant pain, and faced with the possibility that there is a very real chance I may need yet another surgery after this one, I’m just not sure I handle all of that. He’s set to call me on Monday and so I should know after that conversation if I am going to cancel the removal surgery. If he says it’s very likely I won’t need another surgery for many years if ever after removal, then I may proceed. If he says it’s more like 50/50, then I’ll probably cancel and give myself another year or so and reassess later. Dr. Procter suggested the outcome is more variable and unpredictable.

      There’s also still the nagging thought that some of my complaints are psychosomatic. Anxiety about my predicament definitely makes things worse. Might be stuff I can adjust to over time. Especially if a removal surgery could potentially just complicate everything and lead to even more surgery down the road.

    • #21680
      Casimir
      Participant

      @ajm222 “Poor people suffering and they don’t know a fraction of the stuff we discuss here and they seem helpless and scared, and many of their queries have very simple and straightforward answers. And it’s sad to see so many considering radical surgeries with some doctors who appear to be out just to make money off of them while leaving them disabled, and no one is warning them to do a little more research. and then there’s the usual slew of ‘all mesh is poison and will ruin your life’ posts that are completely out of context”

      Spot on.

      A suggestion I would add would be to, if not already done, check all the page titles and headers on this site and optimize them for searches so it appears as high as possible in organic Google searches. I checked the link profile and it has a lot of strong sites linking to it, and that is hard to do, and great, and a big part done. I imagine this site might be a good way for new patients to connect to the contributing doctors, so there might be mutual interest and benefit. This site is head and shoulders above anything else I’ve seen on this topic.

    • #21693
      drtowfigh
      Keymaster

      🙏🏻

    • #21719
      ajm222
      Participant

      Just a quick update: finally made a decision (at least for now) after a 20 minute phone call with Dr. B. today. He was kind enough to call because all of my questions via their portal lead him to believe I had enough uncertainty that some time on the phone was warranted. I had basically made up my mind before the call but he helped me feel better about the decision. Decided to cancel. I got freaked out about the actual surgery the uncertainty of the results and the lengthy recovery, and potentially having another hernia immediately after. My symptoms are a tad unusual, and while they may indeed be caused by the mesh, I think I had too rosy a picture of removal. I was hopeful all these issues would resolve and that I would have no hernia after removal and I would heal and be totally back to normal. While that might be the case, the risks seem too great at the moment for the level of discomfort I have. And the fact that in the last 6 months or so the pain and soreness has almost totally gone away, and the tightness and discomfort are just a tad better (and there are times I don’t even think about it), it didn’t seem like the time to have the surgery. That could change, and we may talk again in 6 months, but for now the pros and cons weighed just a bit more in favor of the cons. I want to see if things continue to change for the better, or if this is the new baseline. If the latter, I’ll just have to see if I can live with that or not. I have to keep in mind the mesh is doing it’s job and I’m not really hurting, and no functional issues at the moment, and there is that chance that things could be worse after surgery. It’s been exactly two years now. He said he doesn’t really do any repair robotically so it’s likely there would be a thin layer of scar issue holding things in but not guaranteed.

      Anyway, still can’t speak highly enough of Dr. Belyansky and his staff. Truly first rate.

    • #21720
      Colt
      Participant

      curious if you had your mesh removed wouldn’t u have to replace it with something
      Either stitches or another mesh

    • #21722
      dh305
      Participant

      Good decision. I wouldn’t do it if those are your symptoms. My surgeon says it’s a dangerous procedure and something they try to avoid at all costs. That was an eye-opener to me. And like you say, no guaranteed results.

      • #21723
        ajm222
        Participant

        “curious if you had your mesh removed wouldn’t u have to replace it with something
        Either stitches or another mesh”

        so in many if not most cases it turns out surprisingly that there is enough scar tissue created by the reaction to the mesh that even once you remove the mesh itself, it’s still possible to be left with enough scar tissue to hold things in – technically no hernia. Dr. Belyanksy refers to this as a ‘scar plate’. it’s anyone’s guess as to how well this will hold things after the surgery, and sometimes you might have a small bulge in that area even if it’s holding things in, but he’s told people that lifetime chance of recurrence after surgery with this scar tissue remaining and no more mesh or tissue repair is between 5 and 10 percent. not sure exactly what he’s basing this on. he can replace the mesh with another mesh, but he doesn’t often do this because if someone had a bad experience with mesh they often don’t want more, or they are more likely to have issues with another mesh. and at that point it’s hard to tell if it was the mesh he put in, or issues still with the previous surgery and product, and things can get confusing. so he prefers to not replace mesh with more mesh if possible when doing a removal. but he will i think in some cases. i believe Dr. Towfigh is one of the few people willing/able to do a pure tissue repair robotically at the time of hernia mesh removal. in most cases a follow-up repair to a robotic or laparoscopic removal would need to be done via the open method as that area wouldn’t have yet been disturbed. so if you had a mesh removal that left you with a hernia, or you developed one later, you’d in that case need yet another surgery. but it could definitely be done, and it could be done as a pure tissue repair.

        hopefully that makes sense.

      • #21724
        ajm222
        Participant

        sorry, still confused by the layout. meant to reply to the post above. as for the safety of the procedure, i think it’s one of those things that, in the right hands, it’s technically considered safe, typically with good outcomes. but it’s a totally different animal than a routine hernia repair, with more that can go wrong, and less certain outcomes. most people i’ve talked to who have gone to the best people that do this regularly have come out of it much better off than they were. but it’s still a little scary. Dr. Belyanksy said each removal surgery he’s done has been humbling, and it’s not to be taken lightly. each one sounds different. if i get back to a place where it’s really interfering with my life most of the day, or things get worse (which is definitely still possible), or i just get sick and tired of not feeling normal after another year or two, i’ll be going back to him and maybe giving it a shot. but i think i need to be worse off than i am before i do that. i just couldn’t justify it yet. i got freaked out and didn’t think the potential risks were worth it yet. i probably need to take some time off from thinking about it 24-7, and get off the boards, and just chill.

    • #21727
      dh305
      Participant

      I’m like you. 8 months in. Very concerning. Symptoms flare up when I am active, but when not active, feel pretty good. Thought about the removal route as well, because this is very concerning and consumes me as well, but I am just going to give it more time

    • #21728
      ajm222
      Participant

      Yeah, at two years I still don’t quite understand things. Seems sitting just leaves me stiff and a bit sore in my lower abdominal area. And I sit all day long. Definitely not back to ‘normal’ though I’m not sure what that even is anymore. And yet some days things aren’t too bad. So variable. It could just be the sitting all day every day that’s the biggest issue. Would explain why I felt better on vacation. Stood most of the day every day. And just walked a lot – no running.

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