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Thread: Looking for Best Neurological Diagnostic Center

  1. #1

    Looking for Best Neurological Diagnostic Center

    I am a 49 year old male with a C6/C7 incomplete who has gone steadily downhill since my original injury in 1999 (from ruptured disk of unknown cause). Initially my symptoms were more of a nuisance than a disability (Brown-Sequard syndrome with minor limp and drop foot on right side). I went on a one day 16 mile hike within the first year of my injury and a 70 mile 10 day back packing trip after three years. Despite almost constant stretching and physical therapy exercises over the years, I am now barely ambulatory (with a cane). My spasticity and hypertonia (S/H) which were originally mild have gotten much, much worse with the addition of low back and sciatic pain on the left side. I just finished 12 weeks of intense PT at Shepherd Center (Beyond Therapy Program - highly recommend) but was greatly limited by my S/H and pain. They do an extensive evaluation before and after the 12 weeks including an ASIA sensory evaluation. The final eval showed that my level of sensation loss had risen and they recommended that I see a neurologist. Over the years in looking for an answer for my continually worsening condition, I have been to Mayo (2000), UAB (2001-2007) and Cleveland Clinic (2008) and had multiple tests but no answers (always told that spinal cord injuries do not get worse). Now I am looking for a neurologist/neurological center that will work with me to find an answer. I am NOT looking for a cure, just an answer to why I am getting worse (and what I can expect in the future). I do not want to be constrained by my insurance so I will to set aside $50-100K to cover all fees and testing (I am fortunate to be able to do this). My question is this - what neurologist/center would you recommend to work with me collaboratively to find an answer?

    I know most of the people on this forum are much worse off physically than I am and I do not want to appear ungrateful for the abilities that I still have. If at all possible, I just want to know where I am headed.

  2. #2
    Quote Originally Posted by Mark McColl View Post
    I am a 49 year old male with a C6/C7 incomplete who has gone steadily downhill since my original injury in 1999 (from ruptured disk of unknown cause). Initially my symptoms were more of a nuisance than a disability (Brown-Sequard syndrome with minor limp and drop foot on right side). I went on a one day 16 mile hike within the first year of my injury and a 70 mile 10 day back packing trip after three years. Despite almost constant stretching and physical therapy exercises over the years, I am now barely ambulatory (with a cane). My spasticity and hypertonia (S/H) which were originally mild have gotten much, much worse with the addition of low back and sciatic pain on the left side. I just finished 12 weeks of intense PT at Shepherd Center (Beyond Therapy Program - highly recommend) but was greatly limited by my S/H and pain. They do an extensive evaluation before and after the 12 weeks including an ASIA sensory evaluation. The final eval showed that my level of sensation loss had risen and they recommended that I see a neurologist. Over the years in looking for an answer for my continually worsening condition, I have been to Mayo (2000), UAB (2001-2007) and Cleveland Clinic (2008) and had multiple tests but no answers (always told that spinal cord injuries do not get worse). Now I am looking for a neurologist/neurological center that will work with me to find an answer. I am NOT looking for a cure, just an answer to why I am getting worse (and what I can expect in the future). I do not want to be constrained by my insurance so I will to set aside $50-100K to cover all fees and testing (I am fortunate to be able to do this). My question is this - what neurologist/center would you recommend to work with me collaboratively to find an answer?

    I know most of the people on this forum are much worse off physically than I am and I do not want to appear ungrateful for the abilities that I still have. If at all possible, I just want to know where I am headed.
    Mark,

    You seem to have gone to several very good centers without getting the answers that you are seeking. From your description of your activity post rupture, I get the impression that you push your body very hard. Although you indicate that your disc herniation is of unknown cause, the fact that is happened when you were 39 suggests that you are very hard on your spine, you have a genetic disposition to osteoarthritis, or a combination of both. Few people I know would push themselves to hike 16 miles the year after they suffered a Brown-Secquard hemiplegia from a herniated cervical disc.

    Based on your description, the only evidence that I see of progressive neurological loss is increasing spasticity. It may reflect changes in your spinal cord after injury, something that does happen in many people, without necessarily indicating increased damage. I am concerned that you are doing so much physical activity that may be stressing your spine. Have you considered the possibility that you have degenerative spine disease and that you should take it easy on your spine rather than pushing it so hard with such intensive physical activity. You have another 30 years to go and need to reduce the wear and tear on your spine.

    While there are several neurological disorders that may lead to progressive neurodegeneration, including multiple sclerosis and other autoimmune diseases, I don't think that it is worthwhile pursuing these diagnoses because current therapies are not particularly effective and pose too much risk to be applied. On the other hand, if you have not, I think that you should make sure that you get MRI's of your lower spine to find out why you are having back pain and sciatica. It may be due to a lumbar disc.

    Wise.

  3. #3
    Wise,

    Thanks so much for taking the time to read and reply to my post. You are certainly correct that I have been to some very good centers but I do not feel they have really listened to me or looked at the complete body of data from all of my tests (of which I have copies). For instance, I had a nerve conductance and EMG tests performed at Mayo (2000) and then again at Cleveland Clinic (2008). Despite my requests the Neurologist at Cleveland Clinic never compared the results of the two (which I assume would have been informative). I am an engineer (which may be the issue!) and am used to trouble shooting a problem in logical, methodical steps. I understand (at a conceptual level) the damage that I have at C6/C7 but it seems like there ought to be a way to determine where else (if anywhere) the signal is being degraded and why. The Neurologist at Cleveland Clinic did test me for just about every neurodegenerative disease known (from MS to ALS) with negative results (thankfully!). Their final conclusion was that my degeneration was unexplainable and recommended that I get a baclofen pump (I had the ITB trial injection).

    You are probably right that I have been hard on my spine with all of the exercising and therapy that I have been trying to do. I just feel like I am in a "use them or lose them" situation with my legs. The hike and the back packing trip were really exceptions to my routine though and were included just to show my previous ability and how far down I have gone (ambulatory with a cane and much difficulty). I didn't mention all of the loss that has occurred over the years - total loss of sexual function, increasing level of loss of sensation (midway up my back and chest) and increasing weakness (especially core and lower back) despite exercise and therapy. My surgeries have been ACDF at C6/C7 (1/2000, redone 9/2001 with plate), L4/L5 -L5/S1 laminectomy (6/2001) and L5/S1 left side foraminoplasty (1/2005). At various times I have taken baclofen, neurontin, lyrica, sinemet and 4-AP. Currently I am taking baclofen and still experiment with 4-AP. Yesterday, I had a botox injection in my right adductor (Dr. John Lin at Shepherd Center) to try to alleviate some of the hypertonia and spasticity that make it difficult for me to walk.

    It has always been my conviction that my degeneration was due to disk issues in my lower back (thoracic or lumbar) but previous MRI's have not yielded conclusive evidence. I'm just trying everything I know to find some answers before I end up in a wheelchair. Although I can certainly live with that result (not sure I have a choice!) - I just would like to know why.

    Best Regards,

    Mark

  4. #4

    find a good doctor

    Hello Mark,

    I understand the burden brought you by the health problem. My friend has nerve damage in his hands and feet. The nerve dying process is slow. It starts with pain, and follows by numbness. No doctor can tell us what is happening to him. I’m afraid that he will be in wheelchair soon if we cannot find a good doctor. If you have found a neurological doctor, could you let me know? You will be in my prayers.

    Happy holidays.

    Heida

  5. #5
    By the way, he is not diabetics. Heida

  6. #6
    A rising sensory level is certainly suggestive of neurologic change at the level of the spine (as is the increased spasticity), and seems unusual. I assume by now you have had another MRI scan to look for any change, and hopefully you have copies of all of your prior spine MRIs on CD.

    You have certainly been seen in some very good places. I suspect it is actually a little hard to find what you are looking for in most Neurology departments/clinic - a spine neurologist. A very rare speciality.

    Certainly you probably know that the most reputable Neurology departments include Harvard (MGH), Columbia, UCSF, University of Washington in St. Louis, Johns Hopkins...

    At UCSF, John Engstrom runs the Spine clinic and is an outstanding, thoughtful, Neurologist. The most incredible diagnostician there is Robert Layzer, although his speciality focus more on the nerves as they leave the spinal cord, rather then the spinal cord itself. In addition to seeing Dr. Engstrom, I would consider also seeing Dr. Gary Abrams who is a neuro-rehabilitation specialist (another very rarely found specialist). He will have a very helpful perspective on the evolution of your symptoms over time, while also considering the diagnostic possibilities.

    I sympathize with the engineer in you, and your desire for a clear, rational explanation. Unfortunately, medicine/neuro does not always follow clear rules and logic....

    Good luck.

  7. #7
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    Hereditary Spastic Paraplegia is a genetic (most of the time) disorder which causes progressive spasticity to the lower leg muscles (usually limiting itself to the legs but not always.) See http://www.sp-foundation.org/hsp.htm. I'm not suggesting that's what you have but I am suggesting that there are many genetic and non genetic disorders that are unknown to the public, even many doctors, and there could be some that fit the bill.

    It's good that your asking questions on the forums. I hope that you'll be able to find some possibilities before setting off to the doctors.

  8. #8
    HLH,

    Thank you so much for your post. I have not yet had an MRI but
    have requested one from my neurosurgeon and neurologist. I will contact the
    Dr's you recommended at UCSF and see if I can get an appointment. It is
    frustrating but I realize that in the scheme of things I have been very
    lucky in life. I often think that I should just accept my situation and get
    on with it. It would be much easier to do this if I just knew where I was
    headed and why. A sense of humor sure helps though!

    Thanks again for taking the time to send me your recommendations.

    Best Regards,

    Mark McColl

  9. #9
    Yes, a sense of humor helps so much.
    It has definitely helped my father..... and I believe has made other people more willing to help him!

    I believe you shouldn't give up finding out why your symptoms have changed. However, it is still healthy to try to make your life as functional, liveable, happy and fun wherever you are at the moment. So this is a mix of acceptance, but persistence.

    The very least you must have is an MRI of your entire spine, as so many different things could be contributing. For example, hardware that has moved a hair from any of your prior sites that is pushing on a nerve/spinal cord, or a synrinx could have developed at a site of prior spinal cord injury etc... or maybe something different is going on and your initial diagnosis needs to be re-assessed. And your neurosurgeon (neurosurgeons?) who have done your prior surgeries should ALL re-examine you (do they actually examine you? Unfortunately, so many doctors do not....), hear your story, and look at your old/new MRIs very carefully.

    Also, if you go to a new location for a 2nd opinions, you should probably see a neurosurgeon as well. At UCSF, you could see Praveen Mummaneni, or Chris Ames (although I believe Ames mostly resects spine tumors these days, but is a very good spine surgeon). One option is to see a neurologist first, ask their opinion on seeing a local neurosurgeon/who they recommend, and then make an appointment. However, I would probably make appointments with all (trying to cluster then) and if one doctor recommends seeing someone else, then just try to add on...

    I admire your persistence.

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