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Forum Name: Neurology Topics

Question: idio.autonomic small fiber neuropathy


 Rachele7 - Fri Dec 28, 2007 6:39 pm

After a staph infection in my spine, and surgeries for, a year later, with fusion and instrumentation, I developed a constant neuropathy in my feet and legs (About a week after discharged from spine surgeries). I was told I probably had a peripheral neuropathy of small fiber type caused likely from the heavy-duty antibiotics for the staph osetomyelitis (Vancomycin and Rifidin) and again given the following year (the Vancomycin)for the surgeries to clean out dead bone and surrounding area from staph and to stabilize my spine (Was told the staph had done a lot of damage) After about a year it lessened with physical or mental stress triggering it back (but didn't always have to have any reason to trigger it) although it then included my hands. Over the years the neuropathy started coming back more often and in the past 5-6 years came back with a vengence with constant again but much much more severe and with the addition of my arms. My feet and hands are of a frostbit burning and my legs and arms are a horrible tight squeezing/crushing deep bone feeling that I don't know how much longer I can deal with even though I am on very high amounts of pain medication for, as the break through pain comes too quickly and is exhausting me just getting from one break through episode to the next (along with chronic fevers, sweats, fatigue, and immune gone haywire, etc. that I've had since 1 week after the stopping of the antibiotics for the staph). I had a skin punch and QSART tests which revealed idiopathic progressive autonomic small fiber neuropathy about a year ago. The QSART stated the change from the previous one the prior year was compelling with a >50% change. The This was very scary news as well as hearing that I had a progressive neuropathy. It stated something else as well having something to do with the ganglions or something like that. Due to some symptoms in my torso I think it may now be proximal as well as distal and in the last couple of months I've had an increasing strange symptom in my one ear and side of my head that started as a tickle like a hair in my ear and now more of a burning in my ear and a pressure on the side of my head above this ear. To save time I'm not going to go into the autonomic symptoms but feel I should say that I also have arachnoiditis with clumping of nerves, chronic mutilevel radiculopathies, severe stenosis with complete block degenerative spine with adjacent segment disease from fusion pressure and "my thecal sac compressed posteriorily both sides and anteriorily" and increasing spondylolisthesis. These spine conditions are all in my lumbar spine and I don't know if can be related to the neuropathy since it includes my hands and arms and now my torso and possibly my head, although it began in just my feet and legs right after the spine surgeries (and reintroduction of the heavy-duty antibiotic/Vancomycin)

Please can you try to answer the below questions as best you can? I realize that you can only give some ideas and guesses from this just being a forum.

Questions: 1. What can I expect with this progressive auto./small fiber PN?
2. Why did this occur after the spine surgeries and was it just the combined trauma to my nerves from the severe staph infection then more trauma the following year with the invasive spine surgeries to clean this damaged area out? But if so why the progression?
3. Could my other spine issues be the cause of the return of the neuropathy and with a vengence? If not do you have any thoughts? I wondered about my multiple severe spine conditions that have increased over time but these are all lumbar and wouldn't answer the neuropathy in my hands, arms and progressing inward (proximal) would it?
4. Since my labs after the spine surgeries did show a temporary medication hepititis do you think the neuropathy after the surgeries was a toxic one and if so why did it never completely go away and in fact came back with a vengence as I thought that ones from a toxic medication type go away after a while.
5. After my spine surgeries a hair analysis revealed high levels if titanium and more recent one revealed less but still up as well as revealing high level than should be of hexovalent chromium which i read is used in spine metal implants as well as reading that some studies are showing breakdown of the metal implant in people. (I was told I had titanium implants and later told steel aloy so I believe I likely have both) I read that metals can be toxic to the body and cause neuropathy. Do you think from what you have read here that this is possible this could be my problem?

Any thoughts or ideas will be greatly appreciated as having no answers makes this progressive and horribly painful condition that much worse.
 Dr. Chan Lowe - Sat Feb 02, 2008 1:39 am

User avatar Hello Rachele7,

Unfortunately, as its name implies, idiopathic autonomic small fiber neuropathy does not have a known cause. I wish I could give you more information but because the cause really isn't known, often it is necessary to continue to follow the case to see if it is going to progress or not.

Heavy metals can cause problems with the nerves; however, I am not aware of titanium causing problems. Titanium is a common metal used for orthopedic braces. Some medicines can induce a neuropathy. Some infections and other illnesses can also induce an autoimmune type illness that can result in a neuropathy. It may be that the stress of the surgeries has induced the flare that occurred. Stress is known to exacerbate these types of illnesses.

I would recommend you continue to follow up with your neurologist. You may also want to see a rheumatologist to see if they may be able to give you any other insight into this.

Best wishes.
 Rachele7 - Sat Feb 09, 2008 10:49 pm

Thank you for your reply. (My 3 actual questions are underlined below.) My neuropathy first presented itself within about 1 week after the spine surgeries. I did have a severe staph infection in my spine the year prior to my surgeries and in fact the surgeries the following year were because of the staph infection in my spine to clean out all the dead bone and surrounding tissue because of the immune system problems that were triggered after the staph infection along with chronic fevers, etc. The surgeries didn't stop the fevers and other problems with my immune system having gone haywire and unfortunately I began the new symptoms of neuropathy after the surgeries. I have read the trauma to spinal nerves can cause neuropathy; can spinal surgeries that had to clean out dead bone and tissue from a severe staph infection, as well as a fusion with rods and screws implanted and also a laminectomy on another level, fall under trauma to spinal nerves?

I have been to rheumatologists and they say although my immune system is being effected by something, I do not have any rheumatological disease. You mentioned that you never have heard of the metal titanium causing neuropathy. What about chromium? (My spinal implants apparently are titanium and stainless steel alloy as I was later told I had both metals) My hair analysis also showed abnormally high levels of hexavalent chromium which I know from the movie, Erin Brokovich this type of chromium is not good for a person in high levels. From my researching I found that some metal implants do have hexavalant chromium. (my surgeries were done 16 years ago)
I need to find a specialist (neurotoxicologist maybe?) who does very complicated cases. So my 2nd question is: Do you know of any close to southcentral PA?
Thank you for your help.

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