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Sural nerve biopsy
Hi. I have severe peripheral neuropathy confirmed by nerve conduction studies. The results of the test confused my neurologist because it showed mixed axonal and demyelination get neuropathy. Originally I was diagnosed with a systemic metabolic disorder which caused metal transport problems which in turn caused a lot of other issues from bone marrow cancer to spinal cord lesions. I have the metabolic disorder treated and my blood levels are now mostly normal but I’ve been left with a permanent spinal cord injury, peripheral neuropathy and bone marrow failure. Just recently I’ve also been diagnosed with Sarcoidosis.
Anyway, after that long story...my Neuro is booking me for a Sural nerve biopsy to see if there’s any possibility for treatment and hopefully improvement in my neuropathy
Does this story sound familiar to anyone? I’m looking to talk to someone with a similar experience or has mixed peripheral neuropathy.
Thanks.
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Thank you! With some unfortunate errors and miscommunication of my present neurologist, I have another one lined up, though since the wait time for specialists is so long, I still have 2 months before that 2nd opinion. I should have my nerve biopsy by then (2 weeks, though I don’t know how long results will take). My neurosurgeon is perplexed we haven’t had MRI done first, and he asked my current neurologist if we should, and he said “No”. He was also asked to confirm which foot to biopsy since he’s ordered it for my predominant foot vs my much weaker foot, but he said keep it where he ordered it. My neurologist is sloppy with notes, and doesn’t like to be questioned, and that concerns me. My neurosurgeon says he has to do what the doctor ordered. As he is the surgeon, nit the referring doctor. Thanks for the links, very helpful! I had no known underlying conditions 5 years ago when this happened, just GI issues. Two years later though something suddenly attacked my liver, pretty much cirrhosis over a 2 month period, non-alcoholic. Then a year after that, throat cancer. I cannot be sure how long I had the cancer. MUSC hospital had taken s CT Scan a year earlier for something else, and discovered an abnormal growth in my neck they recommended ultrasound correlation and biopsy. The problem is they failed to communicate the finding to me, my husband, my PCP, or my admitting doctor while I was in the hospital. When I was moving to another state last year, and collecting medical records from here and there to have for new doctors in NC, I found it by reading the old report myself!!! So, new to s state, beginning of Covid Pandemic, I’m chasing down new tests, cancer diagnosis, and treatment. So the growth was definitely there 2 years ago, and in hindsight, thinking of weird swallowing episodes I’d had prior, suspect throat cancer was in body when I came down with this disabling neuropathy. Dental issues today, but from the chemo radiation, not before. And yes, I have back pain, mostly lower back/tail bone, with tingling and numbness that radiates up lower spine. But doctors don’t hear me, and dismiss as irrelevant, so no scans done specifically fir spine, with exception of a CT Scan I believe when I was hospitalized with this thing 5 years ago. You have been very helpful!
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1 ReactionJust wondering if anyone who's had a sural nerve biopsy can tell me how long it took to get the results? I am going on almost 3 weeks and haven't heard a thing, but don't want to unnecessarily bother my referring neurologist, but we've had a history of poor communication/followup. My patient portal doesn't show results, but they might not have been released for me to see. Thanks!
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1 Reaction@dbeshears1 I would be anxious to see the results after 1 week. 3 weeks I would be making a phone call or at least send a message on my patient portal asking why the results have not been posted on the portal for me to see. I'm sure the neurologist has a PA or medical secretary that would be glad to let you know what's going on. I don't think you are bothering them. It's your health and it's natural to want to know the what's going on.
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1 ReactionThank you for the push. I called this morning, the service confirmed results had been in for 9 days but won’t be released for me to see until the doctor calls first. But she’s leaving a message for his team to please call. Otherwise, I have an appointment in 4 weeks, but I personally don’t think I should have to wait another 4 weeks.
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1 ReactionI did get a written result but waiting on interpretation of "a rare small arteriole shows perivascular lymphocytic inflammation with no evidence of amyloid deposition". Of course I'm trying to google ahead of appointment in 3 weeks. Accompanied with "sever axonal loss".
Hi everyone - has anyone had a sural nerve biopsy? I just had mine done last week & it's been nothing like the 'simple' procedure described online - I'm still in a lot of pain & wondering how long others healing process was / has been.
The results just came back & I've been diagnosed with non systemic vasculitic neuropathy - the recommended therapy is prednisone (kinda scary w/ all the side effects) - has anyone been on / thru this treatment, trying to figure out what to do / expect.
Appreciate learning from others experiences.
Hi @klhunter and welcome. I see that you are asking about sural nerve biopsy and the after effects of it. So sorry you are going through this.
I moved your post to a discussion regarding this so you can connect with members like @dbeshears1 and @lillian32
Did your doctor offer any alterative?
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2 ReactionsI had the sural nerve biopsy 5 weeks ago, and Ii finally see my neurologist TODAY to get the results!! He doesn’t share reports, but I was able to get from another source, so I’m ready with questions! I am hoping there’s something like steroids we can try. ANYTHING, but at least I’m pushing for diagnostics to prove they can’t determine the cause if that ends up being the case. I’ve suffered 5 years with my sudden onset of neuropathy, wheelchair initially fir 6 months but now can use walker, with no tests done but bloodwork until now, so I have no regrets about getting the sural nerve biopsy. I feel nothing ventured nothing gained.
Did it hurt? Yes, for 1 week when I would try to stand or walk. Lying down it did not hurt. But the cut was about 2 inches below the ankle, then some inside. Once I got past the initial pain of standing snd putting pressure on the wound, walking became tolerable. It gradually subsided after 5 days, and then more as it healed. Had it been in another part of the body, it wouldn’t have been painful.
Good luck with trying to get results and finding comfort!
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1 ReactionThanks - appreciate being moved to the right area - No alternatives other than patience for the healing process & the steroid as the treatment option which seems to be the case based on my "internet research".
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1 Reactionthanks for sharing @dbeshears1 - I'm not sure why it's been over a week & I'm still having sharp take your breath away pains from the biopsy. I'm happy to hear you were able to recover. I'm looking forward to that day.
I wish you the very best with your results & subsequent treatment plan!