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Neuropathy Question

Aviatrix36440Aviatrix36440 Posts: 5,904
edited 06/11/2012 - 8:44 AM in Chronic Pain
Howdy all,

I've read various posts where upon said person has surgery say, cervical/lumbar and then develop Neuropathy?!? Okay, I have had 2 fusions in my cervical spine, was diagnosed with lesions and 'severe' Neuropathy of my right arm - the lesions allegedly affecting my C5-8. I am hoping to get a new cervical MRI within the next 30 days, so I guess I will *know* for sure (as I was told those lesions show bright) on that MRI. Okay, I've been also diagnosed with Neuropathy moderate in my thoracic (T8/9/10) and moderate for both legs. I've had no surgeries in those locations - the pain I experience matches pretty well to the protrusions and DDD I have on MRI plus Arthrosis via the Dermatome map.

So.... do any of you know how or why you developed Neuropathy after a surgery? I have read on what it is, but I still really at the core, *don't* understand it in its base of reason. Thanks in advance - just a bit confused. I know MS (lesions) are still on the table for me, but given I am nearing 50, I kinda doubt it. Now if the MRI agrees, I will freak and get over it, understand it (MS), but I don't think that will be the case. Soo... in a nutshell, what causes Neuropathy with no known present disease? Thanks all!!!

PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.


  • I think any doc worth their salt will tell you that there's really no good answer to your question. For the same reason our nervous systems rewire themselves or people experience phantom pain. The proverbial "which came first" the chicken or the egg. Was the neuropathy caused by the condition that the surgery corrected or did the neuropathy spontaneously develop on its own afterward. I don't really think anyone can honestly tell us one way or the other.
  • The "Chicken or the Egg", interesting analogy. I kind of like that way of thinking! It's kind of scary at the same time C, as it is starting to make me feel, short of some odd diagnosis, this is it? I am stuck with it? Gawd! When I see the front of my thigh spasming, I know it isn't phantom in the least - it is real. Lyrica seems to help a lot of it, but not all. It seems worse for my legs for instance in the SUV driving. It feels like my legs want to either die (go numb), or jump all over - mind you, they have never jumped on me yet - just that feeling. Walking, I go about 30 feet and I have to stop due to the weakness and zingy feelings... sigh. Thanks for your input C. *hug*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda,

    Just saw your post re: neuropathy and you detailing the symptoms you are experiencing with your legs. And the uncertainty process of trying to diagnose, and you being in the process of having "idiopathic neuropathy".

    Well, things got jogged for me, of thinking "out-of-the-box" and with it most probably not coming from cervical spine and other disease processes needing to be ruled out...to hopefully get closer to a true cause and diagnosis. And then I'm remembering my own experience of neuropathy in my legs for 16 months not much different than you and when I was about your age 49-51 yrs old!

    Re: Neuropathy "Unknown Cause"

    I had undiagnosed source of neuropathy and even fell into category of polyneuropathy, more than just hands,legs, feet. Right off MRI CT scans ruled out the surgically fused C-4/5/6 bone implant levels as being the source or problem.

    After a spinal tap and every neuro tests that could be done, second and third assessment of neuro's, I resorted to just "living with it" as one neuro suggested to me; I preferred to "trying to survive through it" being more realistic.

    The worse of the neuropathy was my legs and difficulty being able to walk. (my symptoms were primarily stiffness/with pain and inability to function). I was like "a 90 yr old" after sitting and getting up to walk!! It was horrible!!

    I had it for a around 14-16 months (of which 10 months constant so afraid I was destined to be forced to living like that with the cause not known) AND with the verdict "no apparent cause" = there was nothing for them to fix !!

    (and then to be tagged, as clinicians wish to show you they are done with your case, explaining itall too quickly say "it's psycho-somatic", which was the worst blow ever!)

    I knew it wasn't psychological/stress oriented, not for how the disabling stiffness/pain took over when no matter how I felt emotionally stable and not in high stress it just took over, all of my limbs and joints where there was never any pain!

    Re: Diagnosis Discovered

    Five years later, when I was 54 yrs old, it was clear there was a pattern and progression of and I had the puzzle pieces of a medical diagnosis. It would come from an astute rheumatologist, who had studied, researched and diagnosed systemic nature of the disease of arthritis and was on the leading edge of what research had found about the disease of arthritis.

    He took extensive history, symptoms and some blood diagnostics, past neuro-work-ups....and where the no "apparent" cause was explained and diagnosed to be
    an auto-immune disease and disorder, a/k/a "progressive systemic degenerative arthritis / spondylosis disease.

    Those "idiopathic" neuro-muscular symptoms should be considered further into than the non-standard assessment it requires, it's not in the emg's, endocrine blood tests, it has to be considered on a more advance in-depth systemic nature.

    I understand those 16 months of neuropathy was ushered in with progressive and more sudden drops of hormonal endocrine compromise (a/k/a peri-menopause), metabolic imbalance (of which the neuropathy was a symptom).

    Re: 16 Months of Neuropathy - "Threshold Event"

    It was what I call a "threshold event" of my degerative arthritis disease (primarily in my spine) going "systemic" (in the body) and it's heirarchy is progressive and currently incurable as an multi-level degeneration (muscles, tendons, nerves, joints, cartilage) auto-immune disease.

    Brenda, don't know if by me sharing this information can shed new light on what might be happening for you...but

    I hope you find a find "true physician" who studied my case and cared enough to apply his wisdom and keen understanding of all diseases and especially, in my case, systemic arthritis/spondylosis disease.

  • Very interesting and informative post Janelle, Thanks! I've had spinal taps - results normal, blood work ups, B12 was a little low, but everything else within normal ranges...actually most of my results were dead center on the "averages" they test for!

    NCV/EMG extremities and spine included showed the lesions and Neuropathy. The Ulnar for my arm was were they targeted 'severe', and moderate for the Medial motor nerves. All their sticks...and they still talk of C5-8 - But until I see them on an MRI, I feel 95% (and my body tends to be more knowing than I!!) it is from the neck.

    The legs, argh! If I sit 'Indian style' it isn't too bad, but like you argh...the first few steps can be a bi&^%. Walking is getting worse as well. On my last NS appointment (his office is co-joined to the Hospital), I had to stop, bend over and press on the front of my thighs like 3 times! They would start to get a "muscle burn" like feeling followed shortly after that with really weird weakness. Of late sometimes when I am sitting my left front thigh starts twitching! It is an odd ticklish feeling, but not painful.

    Thanks to emergency 'girlie' surgery in '02' I was thrust into peri-menopause. My body doesn't do good on the pill, and I decided that there are more risks to me to take hormone replacement. I just would seem odd for neuropathy to be caused by it now? The legs again match the MRI, so dunno. I will be seeing my GP in a couple of weeks to get my 'general look' over, and get my scrips updated. I will ask her what tests she can give for it, or should I just wait and let the Neurologist run that line? Since none of my doctors work together, I would hate to have something missed because one doctor had this test, and the other doctor the other results - results of which together would yield a proper picture, vs partial due to non communication? Does that make sense?

    About every 2 weeks I skip a day of my Lyrica to see if things got better, worse or changed, and wow am I shocked at how much it is covering my legs! Sigh.. I guess the good thing at this stage is the Lyrica *IS* working and doing its job, so that's a plus!! :) Thanks again Janelle! *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Brenda,
    I am always thinking of you I am glad you posted so I could find out whats happening with you. I am so sorry that you are going through all this, I have nothing to offer as any advice, but I will be praying for you and thinking of you. You are always so positive for everyone here, keep your spirits up hopefully the docs can find help for you. I am glad the Lyrica helps, if nothing else. (if I had another kitty my daughter and I would name her Tiara!) Big Big Hug to you.
  • Howdy Lela!! :)

    Thanks very much for your thoughts and prayers, and of course, kind words! :) I found that there is one thing this 'stuff' can't take - my inner fortitude or better yet (snicker...) my sense of humor! Ooops, plus my kids (the cats).

    I had 2 fusions and 3 other nerve surgeries before I found this site, and the *biggest* fear for me then, was NO answers. I.e....Is this pain normal, what can they do to make it better or fix it, how long does this or that take etc. Since I can answer some of those now, I like to try and share that, as fear is a crappy emotion! Glad to see it helps. :)

    I hope you're having a super day Lela!! *HUGZ* back to ya! :) Thanks again. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I also have idiopathic neuropathy. I went to a Neurologist at Mayo Clinic who conducted a myriad of tests. He stated a diagnosis was more of ruling out causes then finding out what is actually causing them. He sat down with me and stated that all the tests conducted so far were normal, excluding EMG/NVC. He further stated that there was many more tests that he could do, but they were expensive. And in the end i would probably never find out the true cause. I have also been diagnosed with ankylosing spondilitis. I truely believe my neuropathy is caused by this. I can understanding, with the expense, why some doctors do not want to go into the research extensively. Just treat the symptoms and hope for the best.
  • Howdy Rplatt,

    When my NS told me I had Peripheral Neuropathy, he said it would probably be found to be "Idiopathic." I have a good grasp of words, but this one I had to look up - basically being "Neuropathy without a known cause"...yummy! I guess what I am having a hard time wrapping around my brain, is all the areas tie directly to areas that my MRI shows there are problems in!?!

    With this new Neurologist, I am of course going to ask for an updated MRI for my Cervical, and possibly for my lumbar, positional as well - the last one I fell asleep, so when they finished the thoracic, they did the lumbar - recumbent. I guess like many Rplatt, I don't want to find that there is nothing that can be done short of drugs! Grr.... I know, it could be worse, sure, but I am one that wants and needs answers - does that make sense? Thanks for your input though, as I do have to set my brain up for the possibility that this crap is going to stay or get worse. Appreciate. :) *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Joydancer I read your post and I dealt with the same thing.
    After 2nd. Spine surgery I developed neuropathy pain. MRI and tests were fine. Just unexplained pain. Then I got really bad coccyx pain. It was my family doctor that RX'd Sulfazilazin. Bingo! Coccyx pain gone and Neuropathy pain improved. I'm now going to try TNF because the sulfa proved I had a auto-immune inflammation problem.
    But what type? That is the million dollar question as I seem to be seronegative. Which is why my Rheumy from 5 years ago originally DX'd my with OA.

    I believe many of us carry a auto-immune issue prior to life changing event. Then afterwards it gets triggered. IE. Reactive Arthritis, Polyneuropathy or spondylitis. From Surgery or family death etc.

    If people have neuropathy type problems and also have dealt with Arthritis prior should be checked.
    You just have to find a Rhuemy that is willing to try. Exspecially when you could be seronegative.

    great stuff. Thanks for posting!
  • Trust me, i too would love to discover what is causing my idopathic neuropathy. That was the main reason for me going to the Mayo Clinic. I still continue to research the web on a daily basis hoping i find something that will ring a bell in my head. Me and my PM talk extensively during my appointments trying to figure things out. One day maybe. Dont give up your hope and search.
  • I am far from giving up finding out what all is going on. :) I too dig and dig for answers, even my hubby had me write down all the chemicals I've been exposed to over my 30 year career. The list includes the amount of flying I did at high altitudes, the foreign countries I've been too, medicines and vaccines taken over the years etc. Might not make a difference mine you, but it at least puts those things on the table if there is something to it. :)

    Is your Neuropathy getting worse or staying the same? Mine keeps getting worse. Thanks again. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Yes it sure does. After 20 years in the military and now 15 years civil service i also have traveled extensively over the world. Between Southeast Asia and the Middle East i dont know where to start with exposures. Glad to know though that I'm not the only one that researchs this thing to no end.
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