Chronic Nerve Pain After Mesh Removal

[dh305]

Not trying to confuse topics. The topic was about pain after mesh removal. I am considering removal, but due to the complications raised by the original poster, it gives me pause as someone stuck in a weird spot of not having true pain, but discomfort that waxes and wanes. Herniahelper posted a reply in the tread that resonated with me so I guess it took a bit of a turn from there.

[Good intentions]

This thread has become a little bit confusing. E11270 started it to talk about a problem post-mesh removal. Pain after mesh was removed. But now dh305 is talking about a mesh problem, from mesh that still exists. I am not criticizing, just pointing out that the topic is now about a mesh problem, not a mesh removal after-effect.

On mesh problems, it seems clear that there is no specific reason for the pain except the presence of the mesh. All of these doctors that you have talked to are trying to avoid what their senses and logic tell them, instead trying to make the situation fit the narrative that they have been trained and taught to believe. Their first impulse is to reject the idea that the mesh could be the sole cease of the problem. Some big names in the field have even stated flatly that mesh does not cause pain. This is like saying that knives do not cause pain, it’s the cut that they create that causes the pain. It’s disingenuous/dishonest.

The only remedy that surgeons have tried that does not involve mesh removal is neurectomy or pharmaceuticals and they do not work well. Chronic pain has been around for decades and things are not getting better.

This doesn’t really help your problem except that maybe you can take a different view toward the next doctor you talk to. Once you realize the possibility that they are avoiding or dodging the issue the signs of their avoidance will be much clearer. Many of them will try to get away if you start talking about the possibility that the mesh is the problem. But at least you won’t waste your time once they do that.

Keep studying. Be aware of long-term changes as you go through the cycles of pain and recovery. I chose mesh removal when I realized what was happening to my body. The chronic inflammation was affecting everything around the mesh, physical problems, not just pain and discomfort.

Good luck.

[dh305]

@herniahelper the sick irony is my hernia on the right side was totally asymptotic except for a small bulge. I asked the doctor to look at the left side when he was in there and consented to a repair of the left if he found something. Supposedly he found a small hernia on the left and fixed it with mesh. Most of the time it’s my left side that gets sore. Right is much better. I had zero issues with the left side before surgery. Problem from the get go was mostly my left

[Herniahelper]

And is that discomfort in the same area as your original hernia and is it similar in character?

[dh305]

Thanks again @herniahelper
I am about 2 1/2 years out from the operation
Trajectory was a very slow improvement, and I have increased my stamina over the time. now the discomfort does not start until much longer after being active, whereas it would start about 20 minutes of being active prior. The discomfort was always in the same area that it is now. There was never a time after the surgery where I felt great.

I have seen several specialists, including one who has presented on this forum, but I have never gotten any real consensus on what the issue could be. Not having a clear explanation, coupled with the fact that I do feel fine at times when I am inactive or after I sit for a bit gives me great hesitancy to move forward with such a serious procedure

[Herniahelper]

How far out are you from your original procedure? And what was your trajectory of recovery like? Were things totally fine for a while and then this problem developed or was it like this immediately after surgery and never got any better?

It’s the pain you know versus the one you don’t.

There’s no easy answer here. And I absolutely sympathize with the difficulty of this decision. This is part of the reason why forms like this are so important for people to share their experiences. It’s also why Dr. Towfigh’s research, professional and public engagement are so important. People need to hear all this stuff in order to better make decisions on what they should do.

How long have you been living with it? It sounds like if you are relatively comfortable and you can put off certain things and deal with the inconvenience you have the luxury of time. You don’t have to make any quick decisions. And the more time that goes by the greater the experience grows around remediating hernia complications.

That’s saod I do fear that really talented doctors working in this area may leave before you have an opportunity to benefit from their experience.

I think it’s a very challenging area to specialize in. The cases are complicated, the surgeries are exhausting, and the patients are already upset. Many centers are completely overloaded. I don’t blame surgeons after dabbling in it for moving on.

I think you need to talk to different people and see if you can find someone you feel understands your problem and inspires confidence for a good outcome.

You might see one specialist that paints a very negative picture. And that might be because they don’t want you to be disappointed or have unrealistic expectations. It may also be because they know they don’t have the skill to give you a good outcome.

Another surgeon might tell you that it’s a walk in the park. And you have to determine if it’s because they understand your problem, they know how to fix it and their level of skill is there… Or if they’re just hungry for business.

You need to find someone who is thoughtful, who is willing to think about your problem, come up with ideas with you that intuitively makes sense to you. It doesn’t sound like you’ve found anyone yet who’s giving you an option that you want to take that risk for.

I recommend that you fly around the country, as much as a hassle as it is just do it. Meet with the people out in your neck of the woods and if nothing feels right try Dr. T.

Right now you have no clear answer because you don’t have a good option.

And remember everyone’s experience is growing. With every case they learn a little more.

[dh305]

@herniahelper thanks for your considered response.

It really is a catch 22. Do some invasive procedure, with a chance of feeling better, or possibly making the situation worse than it is.

It is quite the conundrum.

Days like today where I worked at my desk, I would say I feel 99%. On a day like this, I think to myself I would be a lunatic to do anything surgical. However, a day like yesterday where I am out trick-or-treating with my kids for two hours, I come back sore, at which point, revisional surgery seems like a valid option.

One hernia expert I saw in Sarasota thinks I should do mesh removal. Another hernia specialist I consulted with suggests that I just “give it time“ and says mesh removal will probably make things worse.

[Herniahelper]

@dh305

With regards to your question about what happens if you have an occult recurrence? That’s part of the reason your surgeon may want to go in and look. If no other explanation can be found and you’re having a lot of symptoms going in and looking, while not benign may offer some answers. If a hernia is found in the region of your pain how a doctor corrects it will likely vary. Some surgeons are of the opinion that more damage is caused by removing mesh and so they just try and add more. Other surgeons think that that’s a terrible idea and may try and remove mesh and completely revise the repair. How much risk of nerve injury there would be is likely very surgeon-dependent. Those are important questions to ask.

If your symptoms are minor I would think long and hard about having invasive procedures done unless your surgeon is extremely confident that they aren’t going to hurt you.

I do see people posting here that they want their mesh out because after they do their daily 8 mile run the area is a little itchy. Or there was a vague tugging sensation intermittently. I think that’s an extremely risky proposition. But I do know of cases where they had it done and they were not any worse. Which really says a lot about the skill of the surgeon. They weren’t any better either but frankly it’s amazing they aren’t any worse.

It’s somewhat counterintuitive but I have noticed people who complain of aches and pains with meshes sometimes report improvement with light activity. I sort of think of it like the pebble in the shoe analogy… If you have a mechanical pressure on an area for too long, moving things around can help relieve that. Or maybe it’s just a distraction and doing things improves people’s mood which makes them less susceptible to pain. For the most part though activity usually worsens pain, particularly with reoccurrence.

[Good intentions]

I just came across an article that I had found a couple of years ago, about the omentum. It might help explain the feeling of swelling and stiffness that people with hernias and hernia repair problems feel.

Apparently the omentum’s role in the body is not well understood. I get the impression that most hernia repair surgeons just think of it as some stuff that needs to be stuffed back out of the way.

https://www.sciencedirect.com/science/article/pii/S2352320419300872?via%3Dihub

From the article –

“The omentum has an established clinical property to pursue and contain the site of injury. A striking feature of the omentum is that its volume expands in response to foreign particles and inflammation. It makes a large number of immunomodulatory cells along with cells having stem cell properties in a process called Omentum Activation.

Several experimental studies have demonstrated that intra-peritoneal introduction of foreign particles can induce a dramatic increase in the omentum volume due primarily to growth factor activation and expansion of the stromal cell population”

[dh305]

@herniahelper my symptoms about two years post laparoscopic bilateral hernia surgery with mesh almost exactly mirror what you described above. Morning start off feeling fine, and the longer I am on my feet the more sore I get almost identically on the left and right side. Standing for long periods make it sore. That is the biggest trigger. Actually doing treadmill, etc seems better than just standing. Sitting for a bit makes it feel better and almost resets and the inflammation goes away. Imaging has not shown anything significant, other than I have a bunch of permanent tack which Affixed the mesh.

If it is an occult recurrence, what does a doctor do? Remove all of the mesh? Seems like I am in a weird spot, because it is not true “pain“, just a more dull soreness that ebbs and flows like you say. I fear double mesh removal would cause more problems than it helps

[Herniahelper]

So we need a little more information. We need to know what was your original procedure, and what your pain is like. Is it on the surface of your skin, if so where? Did you pain change after your revision?

I’m going to guess that you had a Liechtenstein open inguinal hernia repair with mesh? And that when that match was removed there were two nerves in the field that were taken at the time the mesh was explanted. Did you notice any changes as a result of that?

Regarding the comment about lymphedema… This is generally not a subtle problem. If your leg is swelling up like a marshmallow, or you have clear fluid pouring out of your incision after the surgery for days… You have a lymphatic problem. If you had dramatic problems I would suspect you would have mentioned them. You mentioned the feeling of swelling, you used the term swelling, the word association with the physical therapist is probably to mention lymphatic problem. But from your description it does not sound like it.

What does come to mind however is occult recurrence. I mention this because you don’t like sitting and you say that your symptoms get worse as the day progresses. Generally if you feel good in the morning when you wake up and after standing all day or being active you’re unhappy… It’s something to consider.

Also regarding the sitting problem if your original procedure involved
a plug, folding everything over on that when you sit down is generally bothersome. Again we don’t know what your original repair is so it’s difficult to know if that could apply to you.

When you say you don’t understand how the two nerves adherent to the mesh could be removed and your pain is unchanged… The answer to that maybe that the nerves were not the cause of your pain. I know the post above goes into nerve pain in great detail and how neurectomy can improve or worse than that. But there’s nothing based on your description that leads me to believe that it is nerve pain to begin with.

For the major nerves in the groin most of them have an obvious sensory component. And patients with nerve pain are often very vocal about abnormal sensations and unrelenting pain that really doesn’t change with much of anything.

Your daily eb and flow or ok in the morning, worse with sitting, worse as the day goes on, feeling pressure at the end of the day…

Makes me suspicious your symptoms maybe mechanical. There may be a technical problem with the repair.

Lots of assumptions here. I’m just trying to give you a framework, your mileage may vary.

[Good intentions]

Phantom pain is a phenomenon common to amputees. It might be related to your problem. I posted a link below.

Did the surgeon remove all of the mesh? He/she might have left some that was too entangled and cut nerves that he/she thought would deaden the area. But might not have cut all that are involved in that area.

When I was recovering I found that sometimes more activity was better for resolving pain than resting. Getting fluids moving through the damaged areas left behind by mesh removal (and implantation). You might try more vigorous exercise like running if you have just been resting and hoping.

The path to recovery from mesh implantation is a long one. The area cut open is very large internally and the tension created by the healing process stresses all of the surrounding tissues, even after mesh removal. “Tension-free” only lasts for a few days. It’s another misnomer, like “minimally invasive”.

Could you share more details on the original mesh implantation? Type of mesh, the procedure used, etc. I assumed it was laparoscopic. Also, details on the excision.

https://www.sciencedirect.com/science/article/abs/pii/S0304395997000614

https://www.sciencedirect.com/science/article/abs/pii/S0304395900002645

[E11270]

Not enough to return to a normal life. Every day is defined by the pain.

Thanks

[William Bryant]

I dont have any answers but hope you get some relief and resolution.

All I can think of is, it may take time to settle down. Has it improvred at all?