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.

Interested in more discussions like this? Go to the Neuropathy group.

I 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".

REPLY

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.

REPLY
@klhunter

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.

Jump to this post

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?

REPLY
@klhunter

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.

Jump to this post

I 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!

REPLY
@amandaburnett

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?

Jump to this post

Thanks – 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".

REPLY
@dbeshears1

I 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!

Jump to this post

thanks 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!

REPLY
Please sign in or register to post a reply.
  Request Appointment