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Thread: Spina bifida, arnold chiari, cervical stenosis, multiple sclerosis, and pain

  1. #1
    Junior Member
    Join Date
    Sep 2001
    Paradise CA

    Spina bifida, arnold chiari, cervical stenosis, multiple sclerosis, and pain

    Dr Young

    I have an entwined medical situation I'll try to be brief in discribing ...I had three surgerys about thirty years ago for an ocult bifida type mess with teathering of the cord and nerves entwined ect , I recovered with no problems ...then a chiari decompresion with lamenectomy of c1 and cauterisation of the tonsils done by Dr Batzdorf /UCLA three years ago after a long nightmare of misguided evaluation ect and having developed severe symptoms . I had a great responce overall to the acm decompresion .

    I also have confirmed multiple sclerosis ( both MRI and csf testing used for confirmation at both UCLA and UCDAVIS ). Fortunatly avonex use for two years has this appearing "almost in remission " per recent MRI's . For what its worth my mom also had ms , confirmed at UCLA by autopsy last year ...both of us with a slow to progress pattern . I've been told by two neurosurgeons I also have congential cervical stenosis but have declined further surgery .

    Several months ago I had abrupt onset of severe pain in my lower back /buttocks and down to my toes caused by any sustained presure and touching of fabric ect .

    I was already taking 3200 mg of neurontin /day ( I continue to have less other troublesome pain including trigeminal nerualgia with its use ) physicans have added desprimine which has not helped ...I also use darvocette every 8 hours . I'm at my whits end loosing strenght /endurance since I can't sit any length of time , and have no clue what might help most now .

    What is most troublesome to me is this neuropathic ? pain ...there is no evidence the ms has worsened that would account for it ...I am also getting frequent L'herrimites buzzes , jumpy twitchy spots that move around in the buttocks and legs ect short it seems spinal cord related to me ..and my doctors seem baffled what to sugest . I've also recently gotten strange intermittant occular disturbance and moderate to severe headaches again as well current neurologist feels these are migraines .

    No one is certian just what was done with the lumbar /sacral surgerys 30 years back ...records were distroyed by the time my acm /ms was taken seriously so we have only my scanty memories of what was found and done . ( I have the American Syringomyelia Alliance Project to thank for getting me to great physicians when the acm /ms got very symptomtic ...wonderful folks !) Unless I'd want cervical decompressions down to c6 they feel there is no need for further nsg care CINE study post op did show some occlusion felt to be from internal scaring ..but enough flow to feel its worked well too .

    Because the symptoms of acm /and ms overlap so much ..I get bounced from one specialist to another one seems sure what to sugest now ..and I've been unable to find anyone in the US with patients with this combo of problems ...nor anyone with a good idea how to determine what the best course of action may be ...I'm bewildered again and would really appreciate any thoughts you might have .

    My current meds are Avonex , Neurontin 3200 mg /day , desprimine 75 mg at sleep , darvocette every 8 hours , naprocyn twice a day , and occational use of zanaflex when cramping /spactity increases beyond what stretching will help with .

    If you can sugest anything I might discuss with my doctors ( I see physicans in a rural part of northern CA now ) I'd be very appreciative !

    Thanks so much for the time its taken to wade through this post too !

    Sarah In Paradise

  2. #2
    Sarah, I must have started an answer to your question half a dozen times... My heart breaks with the list of neurological problems that you have had in your life. I am sure that I have nothing more to offer than all the specialists that you have seen. Worse, it is not a good idea to diagnose from an internet message. However, your description of your symptoms are so succinct and insightful, I want to take some time to think about what you describe before making suggestions. I will post something soon.


  3. #3
    Sarah, here are some thoughts. I am impressed by the following symptoms and signs that you describe:

    • L'Hermitte's sign. This is consistent with your cervical stenosis. While I can understand why you are reluctant to have an operation there again (having had a acm procedure at C1 just three years ago), cervical stenosis, expecially since it is causing symptoms, is likely to lead to more trouble in the future. You are more susceptible to cervical trauma and spinal cord injury. On the other hand, multiple sclerosis itself, even without cervical stenosis, can be associated with L'Hermitte's sign. So, it is a hard decision but a problem that needs to be taken care of.

    • Your multiple sclerosis seems to be under control with Avonex. Probably the least understood version of multiple sclerosis is the form that you have. Although there is recent data indicating that Copaxone (Glatiramer acetate) is useful and in fact the treatment of choice for the intermittent-relapsing form of MS, there is still no evidence that suggest that it is better for the progressive form. The ocular symptoms that you describe may well be due to migraine but given the presence of MS, there may be a relationship.

    • Your onset of pain strongly points to your lower back. I assume that you have had a thorough examination and investigation of possible problems such as lumbar stenosis, slipped disc, osteoarthritis, and any form of spinal or root compression in your lumbosacral spinal cord. You want to make sure that you do not have an arachnoid cyst, tethering, or related problem in your lumbar cord. You are at a high risk of such problems because you have had surgery, as well as a occult bifida problem.

    So, I would recommend that you see a back surgeon who can lead an investigation of your lower back with MRI and CT with contrast enhancement, to make sure that there is not a surgically correctable problem. Your pain is debilitating and you are already at your maximum level of neurontin. It also sounds as if the pain has been around for a while and that it is not going to go away by itself. Incidentally, the pain has all the hallmarks of neuropathic pain and is clearly breaking through the medication that you are taking.

    The three neurosurgical centers closest to Northern California are UCSF, Stanford, and OHSU in Portland Oregon. Although all these places are good, the third has a specific interest in spinal cord. I suggest Randy Chesnut in Portland who specializes in the spine

    I hope that this is helpful.



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