Neuropathic pain after neurectomy

[Ben999]

You may remember me, I’ve had two hernia surgeries on the same side and have been doing a lot better since the second one, which was 21 months ago.

The mesh that was implanted in the first surgery caused fibrosis in the n. ilioinguinalis which was neurectomized along with removing the mesh. Since then, I’m pain free while resting and mostly pain free while active. However one thing that still elicits very strong pain is touching the affected area, which is especially distressing considering where it is and that the nerve damage also affects pubic hair. Note that touching also means clothes touching it and to some extent bowel movements (the mesh was a UHS which has a preperitoneal part).

My question is, to doctors and patients who have experience with this, does additional surgery promise improvement? (I would assume neurosurgery, since there is no recurrence and hardly any nociceptive pain).

I’m already waiting for appointments at a pain management clinic and a surgical clinic, only for consultation for now. However, I’m not even sure where to begin exactly. I highly doubt the average, or even above average, hernia surgeon can help me with this and my trust of doctors has become very low in general. If anything, the only thing that makes sense to me is neurosurgery, however none of the websites of neurosurgical clinics I could find in Germany talked about hernias at all. Neuropathic pain in general yes, but never specific to hernias. Pain management seems like the least risky option, but obviously fixing the underlying problem would be ideal.

• This topic was modified 1 year, 11 months ago by Ben999.

[drtowfigh]

In my experience, most neurosurgeons don’t handle peripheral nerve issues related to hernia surgery. And only some pain management specialists know what to do.

I encourage you to watch the HerniaTalk session I had with Dr Payam Vahedifar, Pain Management specialist who treats many of my patients. The link is here: https://youtu.be/Wxk3LWBrWBg

Basically, if you have neuralgia after a neurectomy, first best choice is repeat nerve block and maybe percutaneous ablation. That is performed by a Pain Management specialist who is experienced in doing so and understands what we do as surgeons. Another surgical neurectomy may also be necessary.

[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]

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.

[ajm222]

Hey Ben –

Out of curiosity, did you have any other repair done, or did they just remove the mesh and there was enough scar tissue to hold things?

Thanks

[Ben999]

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

[ajm222]

thank you. i think i initially was confused and thought your mesh was purely posterior and removed robotically. but it sounds like it was a mesh placed openly for the most part originally?

[Ben999]

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

[ajm222]

Got it, that’s helpful. I had a mesh placed robotically and likely to have it removed the same way. The expectation (and hope) is that there is enough scar tissue and no hernia present, and it stays that way with no further repairs needed. Hope you get your nerve issues sorted out. Sounds like your recovery went pretty well otherwise, which personally gives me hope. The nerve stuff is always tricky. I myself don’t seem to have any nerve issues and hoping removal doesn’t introduce any.

[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]

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!

[drtowfigh]

It’s a good sign that you got at least short term pain relief from the nerve blocks. Serial blocks, as you had, plus medications is a good first option. If that fails, a pain specialist who does this regularly can then do a nerve ablation. If that doesn’t help, which it should, then surgical neurectomy is the next best option.

In Germany, Drs Conze and Koch are well versed in this. The average genera surgeon does not perform neurectomeis. Hernia specialists do.

[drtowfigh]

Also, watch my HerniaTalk session with Dr Payam Vahedifar, pain management specialist. We discussed this very problem.

[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.

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