[Ben999]

One more thing I just remembered while reading through recent posts on here:

It seems my nerves have regenerated to a certain extent. Even during the “good period” immediately after the removal, the affected skin area was numb at best, which of course was still better than having pain there. Then, once the pain came back, it was a varying mix between odd sensations of numbness, burning, stinging and tearing.

Now though, since about a month ago, the normal sensitivity has come back. I distinctly remember a moment when I touched that area and felt a normal sensation there in the first time for years. It was just the feeling of a finger on the side of my left testicle lol, nothing exciting but I really appreciated it after years of constant disturbed and disturbing sensations there. For reference, it’s been three years since the removal now.

• This reply was modified 2 years, 5 months ago by  Ben999.

[Ben999]

My case has a very poignant relation to this issue. During the preoperative talk it was said that I would have a Lichtenstein repair with a flat 2D mesh, illustrated by a corresponding graphic on the signed informed consent sheet.

However during the actual surgery an Ethicon UHS was used, which not only isn’t a flat mesh obviously but also is explicitly not the Lichtenstein technique as detailed on the informed consent sheet. On there, a surgery like the one I actually got was classified as the seperate Gilbert technique, which was explicitly crossed out. As far as I can tell, Gilbert’s original technique was using a plug and patch, so not exactly the same as a UHS but in some regards more similar than a flat mesh.

My legal case against my surgeon is pending -in part- on that being considered a violation of the consent to surgery, which in turn would legally make it an armed assault. There are other possible legal violations but that’s basically the central one.

For reference, I’m German so this is pertaining to German law and some of the terminology I used might not be correct legally, especially considering it’s translated by me.

[Ben999]

My pain specialist is against any invasive procedures because he thinks it’s impossible to accurately and reliably locate the right nerve(s).
And at least for him that’s true.
Out of the six nerve blocks I got, three affected unintended nerves and one of them made me lose all sensation and motor function of the inner half of my leg for a day.
So I wouldn’t want him to do a long term ablation with that risk.

At the same time, he isn’t considering using any imaging.
Is there any way to locate the nerve(s) before cutting me open? Maybe an MRI?
Or does the pain specialist just have to be very familiar with groin anatomy?
Either way it looks like this pain specialist can’t do much more for me.

[Ben999]

Hello,

I’ve had a UHS removed which I would say is quite similar to a plug and patch in terms of removal, maybe even more difficult.

The first question, is triple neurectomy performed 100% of times?

No.
Some surgeon do it prophylactically but from what I’ve read there is no evidence to support that this is the best way to go.

1.Can a surgeon peel/save nerves

Theoretically yes but from my case and others I’ve read, once a nerve is affected, it’s usually neurecotmized.

2.Can nerves be seen?

Again, theoretically possible. I have a nice picture of my n. ilioinguinalis fused to the mesh. But a nerve could also be too small to see or obscured by something else.

3. A neurectomy can lead to a neuroma. Basically a nerve growth that is pathological. And these can lead to chronic neuropathic pain.

4.I don’t think there are any inherent differences between nerves in this regard. It probably depends on your anatomy and how the plug and patch is located.

5. Partial removal is definitely possible

[Ben999]

Damn that sounds rough.
I feel for you.

As far as I can tell, you only had the repair on the right side?
And the seroma/hematoma was so severe that it also affected the left testicle?
That sounds possible, but it doesn’t explain why you have no sensation at all down there, since your left side was mostly unaffected.

I had a huge hematoma for two months after my first surgery, since my blood doesn’t clot properly, which the surgeon didn’t bother to check.

My testicle survived though, so I think you can reasonably hope that yours, which is only affected as a collateral, will be fine.
Losing the other one still sucks though of course.
You should still be able to have children with one. And I’ve read that the remaining one actually produces extra testosterone to make up for his fallen brother but I’m not an endocrinologist.

Anyway, I hope you recover as much as possible quickly.
I think the swelling and inflammation might explain the numbness although it could also be nerves.
You probably have to wait a little longer to figure that out.

At least it sounds like you’re getting decent pain medication

[Ben999]

I agree that mesh is overused but it’s not the only possible cause of irreversible damage.

You should make sure your surgeon is a master of his chosen technique and especially that he handles nerves carefully!
Nerve damage leads to severe pain that is very hard to treat.

That’s the situation I’m in now even though my mesh has been removed and for a year everything was fine.

I’m not a specialist but from what I can tell, there is no clear evidence that prophylactic neurectomies reduce the risk of chronic pain.
On the other hand, it’s undeniable that all neurectomies can lead to painful neuromas.

Make sure your surgeon avoids neurectomies as much as possible.
And that he handles nerves carefully.

Mesh placed openly inherently has the risk of eroding into nerves.

The laparoscopic approach avoids this risk.
But it necessarily involves mesh.

If you want to hear my recommendation after two hernia surgeries, find someone who specializes in Shouldice or Desarda repair and pays the necessary attention to nerves.

[Ben999]

Another update:
I’m now taking Lyrica and Amitryptiline at the final dosage and I got the 6th injection. Unfortunately, judging by my pain documentation sheet and subjective estimate, the pain is actually getting worse again.
I think it might be because my body is getting used to the medication.
The injections only bring very short-term relief, and my pain therapist doesn’t always hit the right spot.

So I’m looking for alternatives.
The only two I really see are other medication, being first weak then strong opioids, or surgery.
I’ll have a consultation with my pain specialist in a few weeks where I’ll bring up other medication. And I’ll see a neurosurgeon then as well.
I’m also trying to get the surgeon who did the revision on the phone since he’s 8 hours away, which is quite a lot by German standards.

Thoughts by other patients and doctors are always welcome!

[Ben999]

I’m getting regular nerve blocks from a pain specialist right now. He advertises MRI-guided blocks on his website in cases where they’re needed, but I guess at least in my case, he doesn’t need the guidance. He just feels around for certain anatomical markers and then he hits the spot!
One time out of many, he must have missed slightly and my inner thigh muscle (not the adductor, the one more towards the front) was numb for a day, but that’s really just a minor nuisance.

[Ben999]

From my understanding one of the big advantages of lap/robotic is that the chance of nerve damage in the groin is tiny compared to open, since these nerves lie anterior to the abdominal wall. And damage to these nerves is one of the main reasons for chronic pain after hernia surgery.

[Ben999]

Here’s an update.

I’ve had three nerve blocks at the pain clinic. They took away all symptoms of neuralgia for about a day each, however it seems like with each nerve block the symptom-free period got a little longer. So my doctor wants to do another series of 6.

I was slightly disappointed because I hoped he would suggest a more causal treatment like surgery or a long-term nerve block but he said both would be quite risky because of all the scar tissue, fat, unpredictable nerve regrowth and the risk of injuring other nerves. I see his point there, so I will stick with his recommendation.

I’ve also been taking Lyrica/Pregabalin since February and it has a very slight effect. I would say maybe 20% less pain, which is still intolerable.
So now I’m starting Amitryptiline and he suggested to stop taking Lyrica if the Amitryptiline has a better effect.

[Ben999]

I’m not in the double digit gang, I thought my 3 hernias at age 19 were impressive but I guess not.

[Ben999]

I’m not a doctor but I got IONR as a patient from Dr. Conze, who is/was a close colleague of Dr. Muschaweck.
It got rid of the pain for about 1 to 1.5 years but the problem is that nerves regrow, which can lead to recurring pain.

It’s still better than before when the mesh was fused to the nerve but it’s not a permanent fix.

[Ben999]

I’m wondering if you suffered the exact same fate I did. There was a young guy with your name who got surgery the same day I did, by the psychopath who crippled me. Country and time of surgery fit.

[Ben999]

Thank you Dr. Towfigh. I would definitely prefer a causal treatment to a symptomatic one, but I’m very sceptical about and scared of another surgery. I’ll see what the pain specialist recommends. My GP actually suggested giving me nerve blocks but I would rather have it done by someone with specific experience. Percutaneous ablation also sounds promising. I want to avoid taking pain meds for the rest of my life if possible.

[Ben999]

Dr. Towfigh, you mentioned that a neurectomy may be necessary.
Since I’ve tried pretty much everything else except for opioids, I think it should be considered.
And you said most neurosurgeons don’t have experience with peripheral nerves (in relation to hernia surgery).
But who does?
Hernia surgeons?
I have consulted two in my area and they didn’t want to touch me with a ten foot pole.
But they weren’t really hernia specialists, just general surgeons.

Who could you recommend in Germany?
Dr. Conze did the last surgery but I now live very far from him and he isn’t covered by the standard German health insurance. He hasn’t responded to emails or calls either.
Maybe I have to make an appointment and take the time to see him in person.
Could you recommend anyone else, maybe someone who has specific experience handling nerves?

[Ben999]

Sueing a surgeon in that scenario seems pretty scummy, unless there’s evidene that he did indeed commit a major error.

I’m actually in that situation, where I had mesh removed by a specialist and the pain is now coming back, but I would never think of sueing him, as he legitimately did the best he could.

But then again I don’t know that patient’s story.

[Ben999]

You mean what patient or what surgeon?
The patient is Lucas.
I’m not sure I can name the surgeon for legal reasons as I sued him and there’s a case going on right now.
I guess I can say that his clinic is near Coburg, Germany

[Ben999]

As someone who suffers from this myself, the story about your fingertip was really uplifting.
Obviously it’s not the same as a mesh removal with possible neurectomy but a similar situation. Noone really talks about how long it takes to fully heal from a hernia surgery, much less a mesh removal. It’s just about how long it takes to get back to work and for the post surgical pain to subside.
But after so much trauma it might take decades to come close to full healing, especially with nerves.

Also about why doctors use it…
I can say that at least in Germany there is a strong financial incentive to use the quickest (and thus generally cheapest) method, regardless of outcome. Surgeons get paid by the amount of surgeries, not the quality.
Also I have read about mesh companies inviting surgeons to breakfast buffets, holidays and offering other presents…
That’s as much as is public.

[Ben999]

Yes, an Ethicon UHS, it’s placed openly but with connected posterior and anterior parts

[Ben999]

After the mesh was removed, Dr. Conze decided to do a Shouldice repair since he found it the most appropriate intraooperative decision.