Sural nerve biopsy

Posted by lillian32 @lillian32, Mar 23, 2019

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.

@lillian32

Hi, I’m very lucky? I don’t get a lot of pain. My main problems are numbness, loss of proprioception, ataxia and falls. I have confirmed myelopathy too so I don’t know what symptoms are from myelopathy and what are from neuropathy.

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@ lillian32 Here is the Myofascial release discussion that Chris mentioned.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Don't worry about what's what if you try MFR with a therapist, just be present in your body and feel how it changes during a session. I had some mild myelopathy too from spinal cord compression, and MFR has helped me a lot.

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@jenniferhunter

@ lillian32 Here is the Myofascial release discussion that Chris mentioned.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Don't worry about what's what if you try MFR with a therapist, just be present in your body and feel how it changes during a session. I had some mild myelopathy too from spinal cord compression, and MFR has helped me a lot.

Jump to this post

Sorry I’ve taken so long to thank you for your reply. Unfortunately my myelopathy was caused by a lesion in the posterior columns and is almost like an incomplete SCI so it’s not treatable. I’m seeing my neurologist tomorrow and I’m hoping to get my nerve biopsy results. I’ll keep you updated on any findings.

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I got my results today. It shows axonal degeneration with active inflammation and evidence of previous vasculitis. Basically the neurologist is confused by the results. He even phoned the anatomical pathologist himself to get more information. So, there’s talk of being started on immunosuppressants and or steroids. Basically the biopsy resulted in more questions than answers.

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@lillian32

I got my results today. It shows axonal degeneration with active inflammation and evidence of previous vasculitis. Basically the neurologist is confused by the results. He even phoned the anatomical pathologist himself to get more information. So, there’s talk of being started on immunosuppressants and or steroids. Basically the biopsy resulted in more questions than answers.

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@lillian32 – thanks for the update. Sorry to hear you're feeling like the biopsy resulted in more questions than answers. Sounds frustrating.

When will you find out what treatment the neurologist wants to proceed with?

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@lisalucier

@lillian32 – thanks for the update. Sorry to hear you're feeling like the biopsy resulted in more questions than answers. Sounds frustrating.

When will you find out what treatment the neurologist wants to proceed with?

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He’s going to contact my haematologist, physician and respiratory physician. Together they’ll consider the best treatment options. I don’t expect any news for 3 months.

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@lillian32

Hi, I’m very lucky? I don’t get a lot of pain. My main problems are numbness, loss of proprioception, ataxia and falls. I have confirmed myelopathy too so I don’t know what symptoms are from myelopathy and what are from neuropathy.

Jump to this post

Hi, @lillian32 – wondering how you are doing and how things are going with the numbness, loss of proprioception, ataxia and falls you talked about?

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I’ve been living with unexplained neuropathy (sudden onset) for 5 years and 3 days, I “coincidentally “ was hospitalized at the time of onset for UTI/kidney infection. Neuropathy has been confirmed by several nerve conduction studies. I suddenly lost legs and arms, was in wheelchair 6 months but now can use walker. Not a single diagnostic test other than bloodwork (all negative) was done. Even Duke and MUSC specialists I went to said “let’s wait & see”. I could not have an MRI due to an ICD, but had it replaced with an MRI friendly on 6 months ago. My new neurologist doesn’t believe an MRI would be useful, but after begging and pushing, I finally have a sural nerve biopsy scheduled. It’s been hard being put out to pasture at 51 yrs old, and turning from an athlete to disabled without diagnostic attempts to help. Anyway, my biopsy questions: 1) what types of things can be discovered with this test? And 2) After “watching and waiting” this unexplained thing deteriorate me, would it be too late to help me if we did find a cause? (Like a post infection disorder?). Thanks for any guidance

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@dbeshears1

I’ve been living with unexplained neuropathy (sudden onset) for 5 years and 3 days, I “coincidentally “ was hospitalized at the time of onset for UTI/kidney infection. Neuropathy has been confirmed by several nerve conduction studies. I suddenly lost legs and arms, was in wheelchair 6 months but now can use walker. Not a single diagnostic test other than bloodwork (all negative) was done. Even Duke and MUSC specialists I went to said “let’s wait & see”. I could not have an MRI due to an ICD, but had it replaced with an MRI friendly on 6 months ago. My new neurologist doesn’t believe an MRI would be useful, but after begging and pushing, I finally have a sural nerve biopsy scheduled. It’s been hard being put out to pasture at 51 yrs old, and turning from an athlete to disabled without diagnostic attempts to help. Anyway, my biopsy questions: 1) what types of things can be discovered with this test? And 2) After “watching and waiting” this unexplained thing deteriorate me, would it be too late to help me if we did find a cause? (Like a post infection disorder?). Thanks for any guidance

Jump to this post

@dbeshears1 Hello and welcome to Connect. I don't have neuropathy myself, but I found a study that explains the different diagnoses that can come from a sural nerve biopsy. There are many types of neuropathy, and some are inflammatory or autoimmune disorders.

This describes a sural nerve biopsy. https://www.ncbi.nlm.nih.gov/books/NBK551645/
Here is a link to the study that evaluates possible diagnoses, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6884026/

Sometimes it takes years to figure something out as to a cause. Perhaps a functional medicine doctor could help because they will look at the functioning of the body on a biochemical level and the normal pathways for detoxification. For example, I developed an autoimmune thyroid condition that my functional medicine doctor linked to old silver amalgam dental fillings. After I had those replaced by a biological dentist, my thyroid function improved immediately, and the antibodies against the thyroid dropped. I also had health issues that were caused by failing teeth with very old root canals that were spreading infection into my jaw bone, and I made the decision to remove them and replace the teeth with bio-compatible Zirconium dental implants and teeth. There is no metal in those, and my body does not like having metal in it. I also had improvement in my asthma after this, that is until I broke an ankle and needed metal plates to fix it. I just had plates and screws removed from my ankle a couple weeks ago. I broke my ankle last year and the plates were placed there in surgery, but 6 months later, I had developed chronic hives and pain, and my ankle would get warm. Since having them removed, my asthma improved immediately, and the bone pain stopped.

You can search for a functional medicine specialist with the American Academy of Environmental Medicine. On this website, there is a provider search button in the top right corner. https://www.aaemonline.org/

Neuropathy can be tricky. Some kinds can be improved and some cannot. What you can do as a patient is to make changes that improve your health with diet and lifestyle changes. Sometimes getting your body detoxing properly and super nutrition can help a lot. When you get the body fine tuned with better functioning, you give yourself more ability to heal. This is something only you can do; while your doctor might be looking to treat symptoms with pharmaceuticals. Functional medicine doctors try to prevent the problems.

One of our mentors, @johnbishop may be able to give some more insights into neuropathy. I know from my own experience, that the choices I have made have changed my medical destiny. Do you have other conditions with health history that could be contributing to increasing inflammation in the body? The way to better health is by reducing inflammation with lifestyle choices.

I also wanted to add a note. Have your doctors done imaging of your entire spine? I will tell you why I am asking. I am a spine surgery patient and I had spinal cord compression in my neck at C5/C6. That affected my entire body and I had pain everywhere including my legs and I walked with an uneven gait. A lot of non-Mayo surgeons missed that connection which is why I came to Mayo. Here is a study that I found right after a non-Mayo surgeon dismissed me that describes "funicular pain".
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
From this study, https://journals.lww.com/spinejournal/Abstract/1999/06150/Sciatica_Caused_by_Cervical_and_Thoracic_Spinal.17.aspx
"Leg pain resembling sciatica can be caused by cord compression at the cervical and thoracic level. Thoracic kyphosis may be a causative factor in sciatica, in addition to spinal cord tumor and disc herniation, which have been reported previously."

There is no test to confirm funicular pain. According to one of the sural nerve biopsy literature links that I posted, a patient should exhaust all their options before doing the biopsy. The only real confirmation of funicular pain is that spine decompression surgery fixes it and proves it existed. That was my experience too. Here is the literature which you may want to show to your neurologist. If your doctor does not consider this, and it hasn't been ruled out, you may want to get a second opinion.

REPLY
@jenniferhunter

@dbeshears1 Hello and welcome to Connect. I don't have neuropathy myself, but I found a study that explains the different diagnoses that can come from a sural nerve biopsy. There are many types of neuropathy, and some are inflammatory or autoimmune disorders.

This describes a sural nerve biopsy. https://www.ncbi.nlm.nih.gov/books/NBK551645/
Here is a link to the study that evaluates possible diagnoses, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6884026/

Sometimes it takes years to figure something out as to a cause. Perhaps a functional medicine doctor could help because they will look at the functioning of the body on a biochemical level and the normal pathways for detoxification. For example, I developed an autoimmune thyroid condition that my functional medicine doctor linked to old silver amalgam dental fillings. After I had those replaced by a biological dentist, my thyroid function improved immediately, and the antibodies against the thyroid dropped. I also had health issues that were caused by failing teeth with very old root canals that were spreading infection into my jaw bone, and I made the decision to remove them and replace the teeth with bio-compatible Zirconium dental implants and teeth. There is no metal in those, and my body does not like having metal in it. I also had improvement in my asthma after this, that is until I broke an ankle and needed metal plates to fix it. I just had plates and screws removed from my ankle a couple weeks ago. I broke my ankle last year and the plates were placed there in surgery, but 6 months later, I had developed chronic hives and pain, and my ankle would get warm. Since having them removed, my asthma improved immediately, and the bone pain stopped.

You can search for a functional medicine specialist with the American Academy of Environmental Medicine. On this website, there is a provider search button in the top right corner. https://www.aaemonline.org/

Neuropathy can be tricky. Some kinds can be improved and some cannot. What you can do as a patient is to make changes that improve your health with diet and lifestyle changes. Sometimes getting your body detoxing properly and super nutrition can help a lot. When you get the body fine tuned with better functioning, you give yourself more ability to heal. This is something only you can do; while your doctor might be looking to treat symptoms with pharmaceuticals. Functional medicine doctors try to prevent the problems.

One of our mentors, @johnbishop may be able to give some more insights into neuropathy. I know from my own experience, that the choices I have made have changed my medical destiny. Do you have other conditions with health history that could be contributing to increasing inflammation in the body? The way to better health is by reducing inflammation with lifestyle choices.

I also wanted to add a note. Have your doctors done imaging of your entire spine? I will tell you why I am asking. I am a spine surgery patient and I had spinal cord compression in my neck at C5/C6. That affected my entire body and I had pain everywhere including my legs and I walked with an uneven gait. A lot of non-Mayo surgeons missed that connection which is why I came to Mayo. Here is a study that I found right after a non-Mayo surgeon dismissed me that describes "funicular pain".
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
From this study, https://journals.lww.com/spinejournal/Abstract/1999/06150/Sciatica_Caused_by_Cervical_and_Thoracic_Spinal.17.aspx
"Leg pain resembling sciatica can be caused by cord compression at the cervical and thoracic level. Thoracic kyphosis may be a causative factor in sciatica, in addition to spinal cord tumor and disc herniation, which have been reported previously."

There is no test to confirm funicular pain. According to one of the sural nerve biopsy literature links that I posted, a patient should exhaust all their options before doing the biopsy. The only real confirmation of funicular pain is that spine decompression surgery fixes it and proves it existed. That was my experience too. Here is the literature which you may want to show to your neurologist. If your doctor does not consider this, and it hasn't been ruled out, you may want to get a second opinion.

Jump to this post

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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Just 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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@dbeshears1

Just 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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@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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@johnbishop

@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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Thank 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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