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Thread: Dystonia and Cevical Spine issues: Should I keep pushing for action?

  1. #1

    Dystonia and Cevical Spine issues: Should I keep pushing for action?

    First, I VERY much appreciate the input from Dr Wise Young and many others last year on the pain forum regarding advice on obtaining treatment for a degrading cervical spine primarily due to cervical dystonia for the past 17-years.

    Here I am almost a year after my last C-spine MRI, and I can not get a referral to a neurologist that will address my medical issues. Re-reading the responses to my initial question really clarifies to level to which I have hit the wall with my local Dr's as to how to proceed, or more importantly, that I NEED A PLAN, as I want, and feel I deserve an improved quality of life. I am becoming more concerned about loss of function as I am experiencing short periods where I can't move my left arm after sleeping, and have been unable to move the toes on my left foot for over a year now.

    None of my Dr's feel I am any risk as to loss of function due to C-spine issues, and they feel that my constant pain is something I just have to live with - meditation anyone? I also have not been told I should take any precautions regarding my spine, and I feel like I am supposed to "tough it out" but I am getting worse by the month. I thought I was pretty savvy regarding the medical community, but I feel totally inconsequential as a patient, as they just want me to go away.

    Should I go outside of the insurance system and pay for a comprehensive evaluation of my dystonia spinal issues? We can't afford it (who can?), but I don't want to risk losing my mobility either. It have been recommended that I consider a cervical spinal cord stimulator but that won't stop the dystonia, so my spine will keep degrading. I just don't know where to turn.

    Below is my c-spine mri from last year, and Dr. Wise Young's response.

    Thanks for letting my vent. jrcmom
    __________________________________________________ _________-
    Cervical MRI
    C2-3: Normal.

    C3-4: Broad-based central and bilateral paracentral disc
    protrusion
    with subtle flattening of the thecal sac and cord. No
    stenosis.

    C4-5: Small broad-based central and bilateral paracentral disc
    protrusion. Flattening of thecal sac and cord. AP sac
    approximately 9 mm.

    C5-6: Minimal diffuse annular bulge/spur with slight flattening
    of the thecal sac and cord
    . Mild left facet hypertrophy. No
    stenosis.

    C6-7: Small bulge/spur. Mild right foraminal narrowing due to
    uncinate spur.

    C7-T1: Normal.

    IMPRESSION:
    1. Degenerative changes as above.

    Lisa,

    Both Hipcrip and Tam gave sound advice. Let me talk about the MRI findings and some possible solutions.

    A 9 mm AP (anterior-posterior) distance at C4-5 is very narrow. Anything less than 10 mm is usually considered to be cervical spinal stenosis (
    Source). That alone should warrant surgical decompression of your spinal cord. You need to go to a neurosurgeon for this.

    The fact that you have cervical dystonia makes it very likely that the cervical stenosis will get worse and is very unlikely to go away with time. I suspect that the doctors are unwilling to operate on you because of the dystonia. How severe is your dystonia and what has been done to correct it?

    For example, there are procedures to denervate the spinal accessory nerve (
    Source) that are sometimes done to reduce the dystonia. The other possibility is to use botox to reduce the movements temporarily so that the head movements can be minimized postoperatively.

    In my opinion, the term "chemical irritation" does not apply to you. Based on your description and your MRI findings, you have a strong case for repeated mechanical compression of your spinal cord that is likely to be contributing to your pain. More important, it is likely to cause spinal cord injury damage. Both are more than sufficient reason for surgical decompression.

    Wise.

  2. #2
    I have asked Dr. Young to comment when he gets time.

    (KLD)

  3. #3
    Quote Originally Posted by jrc mom View Post
    First, I VERY much appreciate the input from Dr Wise Young and many others last year on the pain forum regarding advice on obtaining treatment for a degrading cervical spine primarily due to cervical dystonia for the past 17-years.

    Here I am almost a year after my last C-spine MRI, and I can not get a referral to a neurologist that will address my medical issues. Re-reading the responses to my initial question really clarifies to level to which I have hit the wall with my local Dr's as to how to proceed, or more importantly, that I NEED A PLAN, as I want, and feel I deserve an improved quality of life. I am becoming more concerned about loss of function as I am experiencing short periods where I can't move my left arm after sleeping, and have been unable to move the toes on my left foot for over a year now.

    None of my Dr's feel I am any risk as to loss of function due to C-spine issues, and they feel that my constant pain is something I just have to live with - meditation anyone? I also have not been told I should take any precautions regarding my spine, and I feel like I am supposed to "tough it out" but I am getting worse by the month. I thought I was pretty savvy regarding the medical community, but I feel totally inconsequential as a patient, as they just want me to go away.

    Should I go outside of the insurance system and pay for a comprehensive evaluation of my dystonia spinal issues? We can't afford it (who can?), but I don't want to risk losing my mobility either. It have been recommended that I consider a cervical spinal cord stimulator but that won't stop the dystonia, so my spine will keep degrading. I just don't know where to turn.

    Below is my c-spine mri from last year, and Dr. Wise Young's response.

    Thanks for letting my vent. jrcmom
    __________________________________________________ _________-
    Cervical MRI
    C2-3: Normal.

    C3-4: Broad-based central and bilateral paracentral disc
    protrusion
    with subtle flattening of the thecal sac and cord. No
    stenosis.

    C4-5: Small broad-based central and bilateral paracentral disc
    protrusion. Flattening of thecal sac and cord. AP sac
    approximately 9 mm.

    C5-6: Minimal diffuse annular bulge/spur with slight flattening
    of the thecal sac and cord
    . Mild left facet hypertrophy. No
    stenosis.

    C6-7: Small bulge/spur. Mild right foraminal narrowing due to
    uncinate spur.

    C7-T1: Normal.

    IMPRESSION:
    1. Degenerative changes as above.

    Lisa,

    Both Hipcrip and Tam gave sound advice. Let me talk about the MRI findings and some possible solutions.

    A 9 mm AP (anterior-posterior) distance at C4-5 is very narrow. Anything less than 10 mm is usually considered to be cervical spinal stenosis (
    Source). That alone should warrant surgical decompression of your spinal cord. You need to go to a neurosurgeon for this.

    The fact that you have cervical dystonia makes it very likely that the cervical stenosis will get worse and is very unlikely to go away with time. I suspect that the doctors are unwilling to operate on you because of the dystonia. How severe is your dystonia and what has been done to correct it?

    For example, there are procedures to denervate the spinal accessory nerve (
    Source) that are sometimes done to reduce the dystonia. The other possibility is to use botox to reduce the movements temporarily so that the head movements can be minimized postoperatively.

    In my opinion, the term "chemical irritation" does not apply to you. Based on your description and your MRI findings, you have a strong case for repeated mechanical compression of your spinal cord that is likely to be contributing to your pain. More important, it is likely to cause spinal cord injury damage. Both are more than sufficient reason for surgical decompression.

    Wise.
    Dear jrc mom,

    I am surprised that your doctors think that nothing can be done about your pain and your neurological loss. You said that you are looking for a neurologist. Perhaps that is the problem. The specialist that you should go to for evaluation is a neurosurgeon, not a neurologist.

    Wise.

  4. #4

    Dr. Wise: results of Neurosurgeon visit

    Dear Wise,

    I actually did see a neurosurgeon locally last year after my physiatrist ran out of ideas regarding treatment. My visit consisted of a lecture contrasting pain vs. suffering, i.e. my perception of pain should be able to trump the actual pain - "if you just broke your arm, and was also told you just won the lottery, your suffering would be significantly lower, as attitude trumps reality." Honestly, that was it - I left the Dr's office knowing that I will never taken seriously after 17 years of trying to cope with an issue no one here understands, thus the onus is put on the patient to live with the fallout.
    Which is why I am wondering if it is realistic to go outside of my area to get an opinion from a Doctor who understands dystonia and its impact on my C-Spine. I know I sound like I am whining, but I really don't think I'm out of line here.

    Regards,
    jrc mom

  5. #5
    Senior Member CurvySAT05's Avatar
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    Mar 2009
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    Southern California
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    JRC Mom,
    Where are you located? Do you have a major hospital near you that you could contact to try and find another doctor? Often what will happen with an HMO (which I am assuming you have, correct me if I am wrong) is that you MUST see someone within their "network" of doctors. If none of those doctors are specialized in what you need, or can't provide the care you need, you can appeal to the HMO to send you to a specialist outside of their network to get the necessary care. Asking for a second (or third, fourth, etc) neurosurgical opinion is not out of the question. There should be no reason to pay out of pocket (god only knows how much) at this time for another opinion.
    It might take some "heated discussion" with the HMO, but you can get it done.
    ~Mandy~
    SCI as a result of spinal surgery
    TiLite Aero Z!!!

  6. #6

    Response to Dr. Wise and Curvy 5Questions for jrc mom

    I went to the BIG appt. , along with my DH to try and push for a new look at making my life more "livable", but my intentions most certainly do not match up with the Physicians I will be seeing this week. I found out right away that THIS Neuro is not an expert at neck and dystonia issues - he is a migraine/headache specialist. We tried to quickly adjust to become open to his expertise. The past 17 years roll by quickly, and we end up agreeing with this dr. that removing a medication that may be making my migraines and nausea worse (cymbalta), would be worth eliminating, so i can see how I feel without it.
    At the same time, he did not want my action plan with my physiatrist to be affected my this med change, as cymbalta should not impact my reaction to medial branch blocks, facet joint blocks, medial joint blocks, or the other blocks that would give my team information as to how to proceed. I just hope and pray that I HAVE a team that looks at the results of these blocks to come up with the next best steps for me, and when the next best step is to stop the INSANITY of trying. I have been at this juncture so many times before in my 49 yrs, and during which I've been set adrift into the "we don't really know, so you just have to deal with your pain using your own methods", because we don't know where to go from here" area of the medical and pain management world - to the point where I feel that no medical professsional honeslty gives a shit about my quality of life. But I am a PERSON and a MOTHER who feels I DEserve a better response than that for myself and my husband, and my 3 sons, and I feel that my life is simply not valued by anyone unless you are me or my mum and dad, or my DH, or my boys. I just need a path, pleASE, AND i WILL WORK IT. where Can I find a Dr. who gives a darn about helping a wife, a mom of 3 boys, and person who really wants to geton a program that will help her stick around for all the joy that her family gives to her? I want to fight to get better, but I won't keep sitting around slowly losing my capabilities either! at some point in life the question becomes obvious for some of us - have my sheer existentce, replete with the constant daily, painfilled-battles, really something my loved-ones should have to be sujected to? The answer for this day is HELL NO! LISA

    Thank you for listening to the rant, and my sincere apologies as well. I'm sure tomorrow will, god willing, bring a spash a sunshine here, or my boys may get an extremely rare snow day in California!

  7. #7

    Response to Dr. Wise and Curvy 5Questions for jrc mom

    I went to the BIG appt. , along with my DH to try and push for a new look at making my life more "livable", but my intentions most certainly do not match up with the Physicians I will be seeing this week. I found out right away that THIS Neuro is not an expert at neck and dystonia issues - he is a migraine/headache specialist. We tried to quickly adjust to become open to his expertise. The past 17 years roll by quickly, and we end up agreeing with this dr. that removing a medication that may be making my migraines and nausea worse (cymbalta), would be worth eliminating, so i can see how I feel without it.
    At the same time, he did not want my action plan with my physiatrist to be affected my this med change, as cymbalta should not impact my reaction to medial branch blocks, facet joint blocks, medial joint blocks, or the other blocks that would give my team information as to how to proceed. I just hope and pray that I HAVE a team that looks at the results of these blocks to come up with the next best steps for me, and when the next best step is to stop the INSANITY of trying. I have been at this juncture so many times before in my 49 yrs, and during which I've been set adrift into the "we don't really know, so you just have to deal with your pain using your own methods", because we don't know where to go from here" area of the medical and pain management world - to the point where I feel that no medical professsional honeslty gives a shit about my quality of life. But I am a PERSON and a MOTHER who feels I DEserve a better response than that for myself and my husband, and my 3 sons, and I feel that my life is simply not valued by anyone unless you are me or my mum and dad, or my DH, or my boys. I just need a path, pleASE, AND i WILL WORK IT. where Can I find a Dr. who gives a darn about helping a wife, a mom of 3 boys, and person who really wants to geton a program that will help her stick around for all the joy that her family gives to her? I want to fight to get better, but I won't keep sitting around slowly losing my capabilities either! at some point in life the question becomes obvious for some of us - have my sheer existentce, replete with the constant daily, painfilled-battles, really something my loved-ones should have to be sujected to? The answer for this day is HELL NO! LISA

    Thank you for listening to the rant, and my sincere apologies as well. I'm sure tomorrow will, god willing, bring a spash a sunshine here, or my boys may get an extremely rare snow day in California!

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