It turns out that one possible diagnostic procedure for amyloidosis is a sural nerve biopsy. In passing I've read comments on here (and likely other forums) about the damage it can leave. Has anyone had the procedure done? Input and experiences appreciated.

I will push for a fat pad biopsy instead, since it's far less invasive and dangerous. That sural nerve biopsies are even done is surprising. There's certainly irony in giving further neuropathy to those who are already suffering from it.

Thank you.

I had the sural nerve biopsy done in 1997...when skin biopsies weren't common.

They took almost 6 cm of the sural nerve (which is the normal amount), so there is NO way there is any feeling below this point. So of course, I have permanent numbness on the outside of my lower leg and outside of my foot. I will NEVER have any feeling there any more.

Was it worth it?? Well, we got good information that was helpful...but at a huge cost!! Would I do it again knowing what I would experience?...NO.

I also had HORRIFIC phantom nerve pain for about 9 months!!

It is rarely done nowadays, except for certain situations. I would get a second opinion on whether this test (vs fat pad) will give the better information.

Let me clarify something, it is not, "damage it 'can' leave"...it is damage it WILL leave. You can't take 4-6 cm of nerve and not have permanent damage. There is no way to reattach the nerve with this much being taken.

Thank you, En Bloc. Despite not having personal experience with the procedure, everything you say is dead on I think. Like I said, I'm surprised they do it, despite the uses it has. It's shocking really. Anyway, I can't think of any situation at this point that would make me have one done. I will push for the fat pad biopsy, which is actually better, if done correctly, so more like a large enough biopsy sample rather than just aspiration.

I'm sorry you had to go through that. What a terrible experience! Thank you for sharing.

I had the sural nerve biopsy done at the Rochester Mayo about 5 years ago. They only removed a very small portion of the nerve. I had a little bit of shooting nerve pain in that area for 2 to 3 weeks after. I have numbness on the outer side of my foot from it-----but I have numbness from the neuropathy anyway.
It ruled out any sort of vascular involvement, showed that there was inflammation, showed a pattern of de and regeneration....but it did not give me any reasons for the underlying cause of my neuropathy and it did not change the treatment.

I have had a sural nerve biopsy, many years ago now.

I so wish I'd never had this done.
I was told by neurologists this procedure would leave a small permanent numb spot on my foot, that's all it would do.

Well, that wasn't the truth about all it could do.

I had excruciating burning pain for years. I could not wear an enclosed style of footwear on that same foot for over 3 years.
I was in agony 24/7. No treatment attempt would touch the severe burning pain. I have also had swelling, color changes and severe spasticity in the foot for years. It's never been the same. Doctors were not very helpful in trying to treat the pain. They just kept saying the surgery/biopsy had been successful.
We did not get any helpful info from the biopsy at that time.

I believe this was the trigger to CRPS, now in both feet/ankles.

My doctors now say they would never order a sural nerve biopsy these days, as there are other options for looking into the various conditions needing to be ruled-out, etc. I am not sure what these other options are; however, it sounds like you are aware of a "fat pad" option which may prove helpful?

I am reading there are often other options, other than sural nerve biopsies and/or muscle biopsies and that these biopsies are not needed as much anymore, due to the alternatives now available.

I hope you are able to find an alternative method to help to clarify your diagnosis.

If you must have a sural nerve biopsy at any point, I hope for the best possible outcome for you.

Very wise of you to post this inquiry before consenting.

Love All Around,

Thank you, Northerngal and DejaVu for sharing your experiences and thoughts. DejaVu, I'm so sorry to hear about your terrible experience. Terrible! I have never heard anything positive. I saw and spoke with the specialist this week and he brought it up again, but I shared my concerns and my neurologist's, and he agreed. He also thought it wouldn't be particularly revealing, since I have no motor involvement. See, with Amyloidosis, the method employed is to biopsy the involved organ(s) and if the nerves are involved, then you biopsy those. I've already had that done during my SFN biopsy and it was negative, but it rarely shows up that way. Anyway, we might do a fat pad biopsy and something else, but there will be no sural nerve biopsy unless it's utterly necessary, and I can't see that happening.

Thanks again and all the best!

David, as far as I can see from PubMed there can be sural nerve involvement in the various transthyretin amyloidoses (which are very rare) and in immunoglobulin light chain amyloidosis.

Obviously check with your health team about this but I would have thought that both could be diagnosed without removing any parts of your sural nerves; there is some information about Dx of immunoglobulin light chain amyloidosis here AL - Amyloidosis Foundation.

Hi Kiwi33,

Thank you for the link. Yes, you're quite right. There can be, but the first step is to have a positive nerve conduction test, and I've had three negative ones. The protocol is to do the biopsy after a positive test. So yes again, there are a number of others tests they can run and have done so for me, all of them negative so far. A few weeks back I had stomach and intestinal biopsies done via endoscopy and colonoscopy respectively that I should hear back about soon, and the latter in particular is a valuable biopsy, especially where there is GI involvement. None of the urine or blood tests have revealed anything.

The TTR test that we spoke about/that I posted about a while back came back negative, as I suspected. If I do have the disease, I've suspected all along, it will be primary or acquired not genetic. The negative TTR is good, though there are many other genes that can be involved, though as I'm sure you know TTR is the most important one, especially with nerve involvement.