Any good studies following long-term chronic pain improvement?
02/19/2019 at 1:51 pm #11642
Just wondering. I know it’s unusual for any studies to follow people for very long. Seems like 3 months or a year is all that people talk about when it comes to chronic pain. Meanwhile, it appears that many non-specific pain issues will often get better or resolve over much longer stretches of time. But maybe that’s wrong. I know that the remodeling of muscle and other tissue, and all the changes that take place with the mesh, can can continue to transform for longer periods. A surgeon that posts here sometimes suggested as much. And with neuroplasticity, even the way we perceive pain and discomfort transforms over time. I have know people who have had various surgeries that included implants of various kinds and it sounds like their many aches and pains continued to change over many years. This would probably be relevant to those people that feel that they need to have the mesh removed if they’re still experiencing mild pains or discomfort after 6 months or a year, which would potentially set them up for even worse problems that could have been avoided if they’d just given things more time. Then again, it’s been suggested that the longer you wait the harder it is to remove the stuff.
I’m at a year out and personally still have some mild soreness in the area on and off after laparoscopic inguinal hernia surgery. And I’ve also had some weird tightness and fullness on my right side from my hip all the way up to my chest. The right side of my torso just feels ‘heavier’ and tighter than my left side. The mesh was put on my right side, though again it was Lap repair and the whole abdominal area was opened up. Had ultrasound and ST scan and nothing is detected. My guess is that my obsession with the area has made me more susceptible to increasing the perception of pain and discomfort that otherwise might be easily ignored. My surgeon even suggested an anti-depressant or anti-anxiety med might be helpful given my OCD (I used to be on one and it did help a lot with another medical issue). And some sort of referred sensation from the mesh tugging on nerves might be responsible for that full feeling all around. I also think think that perhaps I am more sensitive to scar tissue/adhesions/etc, and that the whole area may still be healing to some degree. And the mesh has probably shrunk some as well. Hoping all of that gets less noticeable as time goes by. I am encouraged by the fact I’ve never really had any sharp pain or numbness or anything like that. A month after the surgery I began running again 3-4 times per week like I did before the surgery. It’s my understanding this shouldn’t have caused any issues. But it also seems those who are more active often are more likely to report chronic problems.
02/19/2019 at 2:38 pm #17887
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.”
02/19/2019 at 8:02 pm #17894Good intentionsParticipant
Those studies are over 14 years old. New devices have been produced since then to combat pain and discomfort, like “light weight” meshes. Unfortunately, there is some evidence that they actually make the problem worse. The device makers seem to be guessing at the cause(s) for discomfort and pain while trying to stay within the 510(k) guidelines, for relatively quick and inexpensive new product introduction, in a battle for market share.
I don’t want to make you less hopeful but it’s important to be realistic. The suggestion to take psychiatric treatment drugs for a physical problem does not seem right. Especially since they have their own negative side effects. You might seek a second opinion. Your surgeon has an inherent bias and may not be completely objective.
02/19/2019 at 9:56 pm #17895
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.
02/20/2019 at 10:33 pm #17910Chaunce1234Member
[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.
02/21/2019 at 2:29 pm #17912quote Chaunce1234:
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.
02/21/2019 at 4:42 pm #17913bmul100Member
[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.
02/21/2019 at 5:18 pm #17914quote bmul100:
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?
02/21/2019 at 6:09 pm #17917bmul100Member
So I have hashimotos thyroid. I knew about it prior to hernia surgery but thought nothing of it because it wasn’t making feel bad. It always showed up in blood work and the docs always told me if you start feeling bad then you need to start taking a thyroid supplement. No big deal right. Well about 8 months or so after surgery I started feeling bad. Digestive issues, chills, sweats, body temperature swings of 2-3 degrees, extreme fatigue and joint pain. I started taking the thyroid supplements a couple months ago and it’s had no effect. Basically it feels like your body is fighting an infection or something but it just continues on and on. I’m sure it is a response to the site being constantly inflamed but I don’t know to what extent the hashimotos is related to everything. The physical pain is not debilitating but it is constant and 24/7 and it prevents me from doing normal things. The original surgeon stated at first that it was due to shrinkage then he said it’s a nerve. After seeing him a couple times I realize he didn’t know or care what was going on. Physically I still have sharp pain coughing sneezing or clearing my throat. Sitting for more than an hour the muscles start hurting and the site is tender to the touch. So 15 months later it feels like it still isn’t healed and any physical activity just irritates it more. I’m seeking more opinions to try and get a clear understanding of it all but I just don’t feel like myself anymore. Mine was an open surgery. How long ago was yours?
02/21/2019 at 6:41 pm #17918
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.
02/22/2019 at 2:12 am #17921
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.”
02/22/2019 at 4:27 am #17922DrBrownParticipant
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.
Bill Brown MD
02/22/2019 at 1:55 pm #17928quote DrBrown:
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.
02/22/2019 at 6:24 pm #17933Chaunce1234Memberquote ajm222:
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?
02/22/2019 at 6:31 pm #17934quote Chaunce1234:
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.
02/22/2019 at 6:55 pm #17936DrBrownParticipant
Physical therapy can be beneficial, especially if combine with some soft tissue work.
Unfortunately, the results from injections can be variable. Sometimes the athlete will have get long term relief. Sometimes the relief is only for a few hours. But the injections are easy to perform with minimal risk, so I often use injections.
TENS units are occasionally helpful.
Capsaicin cream is occasionally helpful.
Bill Brown MD
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