[ajm222]

Thanks, Dave! Very interesting to hear that. It’s reassuring to hear from someone else who is so far along and still feeling some discomfort. Sounds similar to mine. Hard to find folks more than a few months out that are still around to share their experiences (that’s probably a good sign in general). I often try and go to other forums where the focus is not specifically hernias and hernia surgeries, in order to get a more balanced sense of people’s results. I go to forums for runners and cyclists and climbers and search for stories about hernia surgery, which I’ve found useful because it tends to start with someone asking about what to expect, while several people who had it years before chime in about their stories. Seems that most people have good results, but I often see people that say they spent a couple of years, sometimes more, dealing with soreness or tightness that seemed to be exacerbated by activity. And it seems for most of those folks the discomfort eventually went away. But it took a long time. Even my neighbor said it was about 18 months before he felt totally back to normal. It’s very frustrating when so many say they were 100% after a few months. But everyone is different. And of course there are probably those that have lingering issues that just don’t really go away. But I’ve also seen a few studies that suggest that 5-10 years down the line all or very nearly all who reported pain (even severe pain) have seen it resolve.

In my case I feel like I am amplifying it with my worries. I spent a lot of time before surgery reading about worst case scenarios and may have gone into it with a subconscious expectation of failure and chronic pain. Just read an interesting NPR article about emotional sources of pain that higher parts of our brain can create or perpetuate even in the total absence of physical damage. And I’ve personally been in touch with an expert in the field who suggested it’s very likely the type of pain I am experiencing is related to that. But I also think this area of the body is particularly prone to lingering effects of surgery that for many just take a lot longer than advertised to resolve.

Any surgeon I’ve spoken with has said keep running/exercising – you won’t hurt anything – it will only help. But it’s probably not a terrible thing to take a week off now and again.

I think my biggest worry is failure of the repair, or that somehow the mesh migrated. This is the thing I don’t really understand. My surgeon and so many others seem to suggest that the way the mesh is inserted in a robotic lap operation makes it nearly impossible that it could move around at all. I do understand that certain types of mesh in the past (the 3D-shaped ones in particular) might fold over in some cases because of their shape and the way they sit in the inguinal canal. But migrate? I just don’t get that. But I worry about it.

Anyway, thanks again. Hope over time you continue to improve and feel better and better. And maybe after a week off I will do the opposite and see how it feels to run for 5 or 6 days straight.

[ajm222]

quote mitchtom6:

My cousin’s repair was mesh. In fact, I believe he said they did a double layered mesh repair. It was done in Richmond VA about 5 years ago. It freaks me out to see him workout like nothing ever happened. Using the Ab Wheel with full extension, etc. Stressing the area to the max. Appears to have had no complications.

would be interesting to know his surgeon. that’s where I had mine done.

[ajm222]

If it makes you feel any better, my understanding is that umbilical hernias seem to have a pretty high recurrence rate if repaired by sutures and not mesh. Also, the sutures used in most non-mesh repairs are typically permanent themselves (if your concern is having a foreign and artificial substance in your body). So even if you got a non-mesh repair, you’d still likely be left with something inside you holding the tissue together.

I understand worrying about having something inside your body (I’ve worried about that myself), but it really just depends on how you think about it. Some people see it as a cool thing and like to brag about it 🙂 I know Dwayne ‘The Rock’ Johnson (the super buff movie star guy) was posting about feeling like Superman and having true ‘abs of steel’ after having mesh placed in what I think was a bilateral hernia repair after he tore things up real good while working out.

If you’re feeling good now, that’s an especially good sign. I would just feel fortunate that your recovery is going so well and you’re now ‘fixed’ and just expect things to only get better.

[ajm222]

quote drtowfigh:

If surgeons are promoting early or urgent elective inguinal hernia repairs, that’s not supported by level 1 evidence.

What about the notion that the longer you wait, the larger the hernia will become over time, which could increase the chances of complications or recurrences after repair?

[ajm222]

quote drtowfigh:

Interesting answers, right?

The data shows risk of watchful waiting to be 0.18%/yr and most of us (should) include that as part of our consent to the patient. Or, it’s safe to wait.

We also know that that the risk of complications, including chronic pain is lowest with laparoscopic repair with mesh done by an expert surgeon. That includes comparators of open with mesh and without mesh.

We also know that surgeon skill is directly related to outcome, including recurrence and chronic pain.

Most surprising to me was the waiting part. It was my understanding that if you’re going to bother getting a repair at all, the sooner the better.

[ajm222]

Thank you, doctor. I have some issues and was wondering if they were related to the mesh, but I think it’s likely unrelated. Didn’t start until close to a year after surgery. And it seems it’s more of a traditional cold of some kind. That time of year. But with the very mild pain I still have related to the surgery and the tightness/fullness I feel a bit on my right side along with some back pain I was wondering if there might be something else going on that I should look into. Energy levels seem fine and I don’t really have many of those other symptoms. But I also know that you suggested elsewhere that they can come on slowly. Probably not something I should worry about unless things get significantly worse, given how rare it is. I don’t have a history of autoimmune issues either, except lifelong eczema of varying degrees.

[ajm222]

But also clearly definitely possible to have a systemic reaction st some point that does spread beyond the implant

[ajm222]

From a lay person perspective, and someone who recently read up on this, my understanding was that, as with most implants (of whatever material they may be made of, and wherever they are in the body), at some point the body reaches kind of an equilibrium where it stops actively making a full-on assault against the material (presumable pretty soon after the actual surgery). Scar tissue builds up and a sort of protective barrier forms around the material within the body to sort of seal it off a bit from the surrounding tissue. The body continues to mildly react to it on a microscopic level at the very surface, but in a way sort of ignores it otherwise, and it shouldn’t impact the rest of the body in any other way at that point, unless it gets infected.

But its it’s a great question, and like you I didn’t really understand how and at what point the body sort of settles down and just kind of accepts the implant if you will. If you have any sort of pain, it would seem like one possibility is that the body is still attacking the implant and going haywire, in such a way that other parts of the body would be impacted by the immunological reaction. But the pain and other symptoms of course could also be caused by many other things.

im not sure if I even have any of that correct (the good doctor could correct), but clearly people get foreign material put into their bodies all the time and are ok. I often think of teeth and how most people have fillings (though perhaps that’s a little different than pins and screws and plastic mesh placed into soft tissue).

Its a a fascinating subject. It also saw it compared to getting a splinter (the way the body surrounds it with hardened tissue to seal it off), and even a tattoo (which remains because of a neverending immunological assault).

[ajm222]

quote drtowfigh:

1. It happens. Presumably it happens less with more experience. No data on this.
2. Most often does not cause any symptoms.
3. Would never address it if it’s asymptomatic

Very interesting, thank you. I’d assumed that folding of any degree would inevitably lead to much pain and probably a meshoma and/or recurrence, and would have to be surgically repaired. Good to know that’s not always or even often the case.

[ajm222]

quote Chaunce1234:

Have you considered targeted physical therapy? After an injury or experiencing pain, people may consciously or unconsciously change their movements or postures as a guarding mechanism. I wonder if that might help in your situation?

Yeah, that’s kind of what I was thinking of trying. I do think that might be a part of it.

My overall pain and discomfort would probably be identified as low to moderate, mostly on the lower side. So I think these types of interventions could actually be helpful, along with more time. Right now I’m not really doing anything about this, aside from worrying.

[ajm222]

quote DrBrown:

Long term pain drags you down mentally and physically. You find yourself thinking will I be in pain for the rest of my life? Will I never be better? Will I ever have sex again. The pain is very hard on personal relationships. I prefer to try to get treatment started early. There are thought to be three main causes of chronic pain after hernia repair. One is a recurrent hernia. This should be identifiable on physical examination or with ultrasound.
Next is the body’s reaction to the mesh itself. Mesh becomes scarred and shrinks and becomes stiff. This is usually a pain that feels deep. Often gets worse with aggressive activity. Often gets worse with long periods of sitting. The pain will get better with rest.
Next one of the nerves has been damaged. This will often be a shooting or an electric pain that is more superficial. The skin will often be sensitive to light touch.
If you think that the mesh is the source of pain, then the mesh can be injected with marcaine and steroids. This will often provide relief.
If the nerves are the source of the pain, then a nerve block with marcaine and steroids can be very beneficial.
Removal the mesh and neurectomy are the last resort. The operation can be very difficult and sometimes the patient does not get improvement.
A very difficult problem.
Regards.
Bill Brown MD

Thanks as always, Dr. Brown. None of those descriptions really describe exactly what’s going on with me (though I’ve probably had fleeting moments of all of it here and there), so I go back to thinking perhaps my issues are less related to the mesh and maybe it’s something else entirely, or a combination of things. I did have a lipoma removed from the spermatic cord. Maybe I’ve got some lingering pain pathways around that that are continuing to be activated and may settle with time. I’m pretty sure I’m also carrying myself differently as a way to sort of protect myself and the repair from any damage, or trying to not trigger any uncomfortable feelings/sensations. That could be causing some of the stiffness and soreness, because I’m getting it in my back on that side as well. I think relaxing more and maybe trying to start some yoga-like stretching exercises would help, and maybe even doing some weight lifting or core strengthening exercises could be useful to give me more confidence. I do imagine the mesh has shrunk some and that I’m feeling it to some degree. But I don’t think it’s painful. Just noticing that the area within feels a little different, with an occasional tightness around the hip and lower abdomen. That’s something I hope will improve with time at this point based upon other people’s experience, though I imagine it will take a while. I don’t know how long the mesh continues to shrink and change but these feelings have been pretty stable for about 6 months.

I do have a question, though – when you say relief can be provided by steroids and marcaine, does that tend to lead to long-term improvement, or just temporary? Just wondering about those that seek out these treatments and what their ultimate result/prognosis is. I often hear doctors mention these treatments but I’ve never gotten a sense of whether this ultimately improves or fixes their problems, or simply helps them for a few weeks or months until the problem gets worse again.

[ajm222]

Pertinent to the original post, I stumbled across this:

”A major limitation of these results is that the follow-up periods were very long in both studies, and therefore, it is possible that the pain had simply dissipated over time. In fact, one study on IHR in adults showed a complete absence of chronic postoperative pain after a follow-up period of 10 yr.”

https://academic.oup.com/bja/article/109/4/603/237571

[ajm222]

Mine was just over a year ago (2/8/18). It was laparoscopic, partly because there was some chance I had one on both sides (turns out it was just the right). I had an indirect hernia. Surgery done with the DaVinci robot, using a ProGrip mesh.

Sorry to hear about all of your troubles. I know Dr. Towfigh has suggested existing autoimmune issues could be a consideration not to use mesh, though I think she said there’s also no strong data yet to back that up. I think she’s said she has had people with autoimmune issues who did fine with mesh and vice versa, but that she tends to err on the side of caution and not use mesh with those patients (at least the ones with major AI issues like fibromyalgia, etc) unless it’s unavoidable for other reasons.

Sounds like your situation is complex and there could be a number of explanations. I don’t know what the various options are for treating Hashimoto’s, but I wonder if you could somehow get that under control if it would help with the mesh-related pain. I think that it can take a while to get the right dosage and combination of medications/supplements to control the Hashimoto’s, and that you have to probably monitor it regularly. Stress from surgery can probably flip a switch and essentially turn on something like that that’s been relatively dormant. Or perhaps the timing is coincidental. Just throwing out some thoughts.

Was just reading on a runner’s forum about several folks who had hernia surgery years before and they still occasionally have pain or soreness in the area but it eventually goes away within hours or days. But it sounds like yours is worsening rather than improving and pretty much constant which obviously at 15 months it probably shouldn’t be. Hopefully Dr. Towfigh has some helpful thoughts.

[ajm222]

quote bmul100:

[USER=”2051″]ajm222[/USER] the further along I get into this I realize that we are all in this alone as the system does not know or care what the devices are doing to our bodies. I got right back to being active 2 months post op too. Now it’s 15 months post op and I feel if I am active I’m just rolling the dice on making everything worse because it’s shrinking and the site is constantly inflamed. My whole body has been impacted by the response to the implant. Patients deserve to have more of this information up front. This is a life altering surgery because of the permance of the device. It sure was not billed that way in my case. I do think that being young and active makes a huge difference too in my case.

hey there. i think in your other thread you said you were dealing with auto-immune issues? what kinds of symtpoms? i take it you’ve got multiple things going on, plus the mesh area is constantly uncomfortable?

[ajm222]

quote Chaunce1234:

[USER=”2051″]ajm222[/USER] I can’t recall if you had mentioned it before, but did you have pain or discomfort in the hernia area prior to your surgery? If so, did those symptoms change at all after the surgery?

One of the (many) things I find frustrating about chronic pain data is that there is often a lack of context about the pain, pain severity, pain specifics, type of pain, pain location, patient specifics like general health, weight, age, or activity levels, and even the details about pain specific to the procedures that were performed. To me that all seems like relevant data. I would assume that different procedures have different specific pain risks for severity, types, and locations of the pain, and that data should be tracked and published too. Maybe some procedures have pain that is easier to treat than others? Wouldn’t that be important to know?

And much to your point, the longterm follow-up and outcome data is missing, which is clearly relevant. How do these patients do a year, three years, five years, 10 years, 20 years down the road? Did the pain improve or go away on its own? Do some procedures have better response to certain pain treatments than others? Do some specific procedures have better improvement in pain over time than others?

There are so many variables involved on the input side, so these are tough questions. But the output is ultimately patient quality of life, so regardless of how difficult the questions are, the answers matter.

Hi Chaunce,

Thanks for your response. Yes, I did have some pain before surgery off and on. I had some pain around the actual hernia site plus some testicular pain. And it did turn out that I had a lipoma on the spermatic cord I believe that was removed during surgery. I also have minor issue with back pain and had been dealing with some more general groin pain off and on as well during certain activities.

I spent all day at work yesterday reading about chronic pain and centralization and the various types of pain and the treatments and the prognosis. One place will simply say chronic pain is incurable, other places will say it really depends on the kind of pain, intensity, duration, cause, location, personality of the sufferer and the way they interpret pain, etc. etc. It’s all so complicated. But so is the body and so is this surgery. I also spent part of the day reading about foreign body reactions and the various ways the body deals with mesh. One website will have a very short summary, another location will link to a 30 page long paper about all the various types of cells and proteins that will work on the foreign body and the stages that take place over time. Wound up probably being more confused than ever 🙂 On the one hand you start thinking the body eventually incorporates the mesh and reaches some sort of balance that results in a nice, clean fix. Then you read more and start wondering if putting ‘plastic’ in your body amounts to a lifetime of forcing your body to fight off an invader, which sounds like a bad thing.

In my case, given my personality, perhaps I may be overthinking this and just need to give it some more time. The things I am feeling might not bother or worry another patient at all. There’s definitely still pain that probably, ideally, shouldn’t be there at this point. But it’s mild, and it does come and go (sitting at my desk now it’s not bothering me). It doesn’t get especially worse or better with intense activity. It’s not especially sharp or burning and there’s no numbness. Just some soreness and I guess I would say sensitivity. And if I spend an hour doing lots of varying movements (say cleaning the house or my car), I would say it definitely feels a bit more tight on my right side and I’ll feel the soreness more often. But perhaps even at a year out that’s not entirely uncommon. It’s confusing because the patient often thinks they should feel 100% a month or two after surgery. But I think the reality is that we’re never 100% anyway, and that perhaps the changes taking place in the body can go on for years, at least on some level (or forever depending upon how you look at it). I know my neighbor recently told me it took about 18 months before he felt what he’d call stable and mostly healed up. And some studies I saw suggested that over several years the incidence of pain continued to improve very slowly in many hernia patients. Meanwhile, another internet page will seem to suggest if you have any pain at 3 months you’d better start getting treated by a specialist or consider removing the implant before it’s too late.

I think my bigger concern is some of the tightness and pressure/fullness I feel on my right side. And that’s not pain really. Just discomfort. I don’t know why it’s there but I started considering all kinds of possibilities that scared me – damage to the fascia during surgery, incisional hernias, adhesions, mesh migration/folding, etc. I’ve been checked physically by several doctors and the surgeon (and had ultrasound and CT scan) and all said my ab muscles seem fine with no apparent hernias. I’m starting to think my own mind is my biggest obstacle because I get these thoughts in my head that are probably wrong because I don’t have the knowledge or education to accurately interpret the things I search for and find on the internet to diagnose myself.

When I lean back it feels like the right side of my abdomen bulges out way more than my left (like my insides all move to the right and stick way out), but when I do a sit-up everything feels tight and firm. It’s weird. And that kind of weirdness just makes my hypochondria act up. But the body is weird and maybe that’s normal. I also have a lumpy area on the right side below my rib cage like a little balloon that goes up and down when I breathe that I don’t have on the left side. But again the ultrasound and CT scan showed nothing unusual.

I think I may also be amplifying sensations on the right side of my body by hyper focusing on them. I do better if I just try and not think about it. I also have pain now in my lower back on that side, and I think I’m just carrying myself differently because of my subconscious focus on this area. And this is causing back and side soreness.

I think some of this maybe also gets to the root of some of the chronic pain epidemic we’re seeing. I think expectations about pain are important. People get scared as they get older and any pain they notice, depending on their personality, can freak them out and send them running to the doctor for a fix. I may just need to relax and give myself more time. I just don’t want to ignore it if there’s truly something wrong because of the stuff I read about centralization of pain and the way some bodies react to implants. The idea that my body might not want this thing in there but it’s in there now and only an expensive and complicated and dangerous surgery could remedy that, but also make things much worse, is just a terrifying thought. And it’s scary seeing people here who have had issues for years and years, or had things go bad many years down the road after feeling ok.

Hopefully the tightness improves and the fullness settles down (and the soreness lessens). I worry about the tight feeling because it sounded as if there isn’t much you can do about that short of surgery if it’s caused by a shrinking mesh. But it isn’t terribly uncomfortable and it isn’t constant so maybe there’s room for things to stretch out a bit and feel more normal over time, especially if I force myself to try and move more normally and naturally and do some stretching exercises. I can’t imagine it would shrink much more if I am a year out.

Sorry for the length of this post. Just using this almost as a blog at this point to kind of track my progress and get my thoughts out. One thing I have struggled with is accurately explaining these sensations to doctors when I do have appointments. I think I am just going to give myself another 6 months and see where I’m at then.

Apologies to all those people here who have intense pain as a result of the surgery, or who have had multiple complicated surgeries and come here seeking help. My issues probably seem whiny comparatively speaking.

[ajm222]

quote Bobcoco:

Pain that comes and goes. It’s been worse lately, to the point I’ve finally decided to do something about it. It was an open mesh repair roughly 14 years ago.

Wow, that’s a long time to deal with that. I wonder if you’ve experienced a recurrence. Or maybe it’s just always been uncomfortable?

[ajm222]

quote Bobcoco:

Ezzy, thanks for the info. That’s good to hear. What made you decide you wanted a ‘no mesh’ repair? I might pick your brain about this some more in the coming days if that’s alright. I’m still looking around, but intrigued by the Desarda technique. I currently have an old mesh that’s giving me fits, so not eager to get another one put in…..I’m leaning toward the no mesh options.

How old is your mesh repair and what kind of surgery did you have? What kinds of issues is it causing?

[ajm222]

cool, thanks. i’m guessing he got the impression something like that would help after the full context of our discussion. i did indicate to him i had a lot of OCD/hyochondria/anxiety issues and felt i was obsessing a little too much about what effectively amounts to mild pain/soreness at this point and some non-specific discomfort that’s hard to describe and pinpoint. but i also agree with what you said. i will definitely consider a second opinion perhaps with another surgeon at some point. i’m guessing next steps for most specialists would amount to some conservative measures i haven’t yet tried – nerve blocks, steroids, SSRIs, or phsyical therapy.

[ajm222]

Just found a few actually that have some info

“Of 280 male patients selected at random and interviewed nearly five years after surgery, the rate of chronic pain (any presence / correlated with physical strain / impacting quality of life) associated with laparoscopic transabdominal pre-peritoneal (TAPP) hernioplasty repairs (15% / 11% / 2.4%) was significantly less than with Shouldice (36% / 25% / 14%) or tension-free Lichtenstein (31% / 20% / 13%) repairs. “The TAPP repair represents the most effective approach of the three techniques in the hands of an experienced surgeon” and “there is no difference in the pain associated with open mesh and non-mesh repair.”

“Chronic pain had been experienced within the previous month by 22·9 per cent of the patients who responded. There was an overall decrease in pain with time, from 29·7 per cent at 6–12 months to 18·1 per cent at 37–48 months after surgery, with no overall differences between the three types of repair. Pain was more common in patients younger than 40 years of age. Some 3·9 per cent of patients described the pain as moderate to severe and as frequent or constant. Of all patients with pain, 10·7 per cent experienced it as worse after than before surgery, and 56·6 per cent stated that it interfered with social activities.”

“After a follow-up of 36-77 months seven recurrences were found in the Shouldice group (95 per cent confidence interval (c.i.) 1.3 to 8.1) and one in the mesh group (95 per cent c.i. 0.0 to 2.0). Chronic groin pain was reported by 4.2 and 5.6 per cent in the Shouldice and Lichtenstein groups respectively. It was characterized as mild or moderate in all except two patients who had the Shouldice operation.”

ncbi.nlm.nih.gov/pubmed/15243743

https://www.ncbi.nlm.nih.gov/pubmed/11851662

onlinelibrary.wiley.com/doi/10.1002/bjs.4502/full

[ajm222]

Thank you Dr. Brown. I believe I just found your website and was reading some of the information there. Sounds like you are pretty set against using mesh.

I had my laparoscopic surgery a year ago for an indirect hernia on my right side at the age of 41. I still have some soreness and tightness in the groin area occasionally and some general tightness and strange feelings overall on my right side all the way up to my chest. But very recently i haven’t been noticing it nearly as much. Most of the time I’m not in any pain. Doesn’t seem to be any better or worse with exercise. I also don’t appear to have a recurrence. So I have no idea what’s really going on but hoping it continues to fade. Some testicular discomfort as well but i also notice that sometimes on the opposite side where i didn’t get any mesh. And no pain or other issues with sex. I did have a vasectomy a couple years before the hernia repair.

Sounds like you’ve found that the pain will eventually go away in most patients, or at least lessen substantially, particularly if nerve blocks or other conservative treatments are used. Is that accurate? If so, does that suggest that it may just be a matter of settling those nerves down until the body has a chance to sort of come to terms with the presence of the mesh so to speak? Any theories on that? I guess it’s complicated.

I’ve also read other reports that suggest the incidence of chronic pain in pure tissue repairs in some studies isn’t that much less than with mesh, and I feel like some of the other surgeons here have suggested the same. But maybe I have that somewhat wrong. I guess it also depends on the technique, the skill of the surgeon, the type of mesh used and the patient themselves.

Thanks again for your reply.