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Thread: 54 years post C 5/6 SCI

  1. #1

    54 years post C 5/6 SCI

    My generic medical community (neurologist, orthopedic, pulmonary, urologist, GP) is having difficulty maintaining my health and independence. Since a bout of pneumonia in January 2013 I have had:
    1. very strong extensor spasms (back & legs). Thanks to this forum, my Requip is taking care of my RLS/PLMD Muscle relaxers cause "psychiatric" issues. I am awaiting results from last week's full spine MRI.
    2. late onset asthma. shallow breathing, wheezing. Post sleep study I will be using an oxygen concentrator.
    3. Massive weight gain. A self-imposed rteduced, low-cal eating seems to be melting the pounds.
    4. Profuse sweating, shoulders and above, and I don't think it's due to pain, bladder, or bowel. During day and night.
    5. Uncontrolled dozing and nodding off with no warning, preventing me from driving.




    I have massive tears in both rotator cuffs.

    Another autonomic NS problem, tho long term, is low BP. An Rx for Midodrine has eliminated woozinesss in mornings, but on a recent ambulance/ER visit everyone went crazy with my BP readings, the lowest being 51/40. Normal for me iis 90/40.


    In a perfect world, I'm lookin for a concorsium (sp) of doctors who have experience with long term SCI who would serve as an advisory resource to my specialists.

    Thank you for any suggestions you can provide. I live in Washington DC area but have found NRH not a good resourse.

  2. #2
    Senior Member chris-k's Avatar
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    Quote Originally Posted by H3llz_Angel2 View Post
    My generic medical community (neurologist, orthopedic, pulmonary, urologist, GP) is having difficulty maintaining my health and independence.

    In a perfect world, I'm lookin for a concorsium (sp) of doctors who have experience with long term SCI who would serve as an advisory resource to my specialists.

    Thank you for any suggestions you can provide. I live in Washington DC area but have found NRH not a good resourse.
    Well HA, if you find someone please let me know!

    I have many issues similar to yours. I have been unable to find a doctor or hospital that understands aging in long-term SCI patients. It seems there are too few of us that survive long enough to collect data on. This is changing, but I don't see how any research will be available soon enough to help folks like you and me.

    Quote Originally Posted by chris-k View Post
    So here's the thing...

    I just turned 60, C4-5 ASIA-A Complete, 44 years post trauma. So OK.

    Just had a physical and my PCP expressed concern over my slightly elevated fasting blood sugar (120), high Triglycerides (>250) and low HDL (<24).

    I explained that these are common in SCI, especially at my age. He wants to be "aggressive" in treating these and I want to be, well, a lot less aggressive. My lipid panel has always been somewhat abnormal, but the numbers are trending up a bit.

    Any advise or similar experience from the other "seniors" out there

  3. #3
    Hope you use an oxymeter on a regular basis to be sure you are well oxygenated, at least rule this out regarding fatigue/sleep issues. My wife is a post polio chair user for 64 years. She was doing fine until a pneumonia bout followed by 150 days hospitalization about 3 years ago. Since she is followed closely by a pulmonologist and uses a BiPap machine while sleeping.

  4. #4
    Senior Member Tim C.'s Avatar
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    54 years

    54 years, impressive. True inspiration.
    It clearly demonstrates the determination of an individual against conventional thinking of the day. You made it thus far, you deserve only the best that current medical science has to offer: Free of charge. I wish I was in a position to offer you both. As a 4/5 I don’t see myself extending that far, nor can I handle the concept of it. I get some of those symptoms at 11 yrs post

  5. #5
    As a C6,7 complete, 58 years post I am one of the older guys around here... and I feel your pain. Knowledgeable care does not exist for us oldtimers. I have outlived all but 1 of the physiatrists who I worked with in my early days. We are too scattered around for anyone to get any significant experience. There may be a couple docs in the VA system but we could not access them anyhow. I have a good primary care doc and he and I are both learning on me. About the only research being done related to geriatric SCI is directed at estimating how many of us the are and assessing how bad off we are. lol We know that. I did very well for the first 50 years post but the last few have left me in a free fall. Sorry I cannot be of more help, but with 54 years under your belt I know you are used to facing bad news. Hang in there.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  6. #6
    thanks for the posts. it's good to know i'm not alone. it's been a lifetime of trial & error, adaptations. With techoogy (electronic driving controls, ceiling mounted transfer system) i hv maintained my independence.............until now................. until i regain muscle strength and stop the uncontrollable dozing.

  7. #7
    sounds like sleep apnea might be one of your problems

  8. #8
    my sleep study test revealed moderate apnea but showed i'm one of the 20% who can't tolerate the mask. i will begin using an oxygen concentrator, but i'm such a light sleeper that it will be a challenge to successfully use it. i'll try my ear plugs that i have for blocking out the cricket noise!!

  9. #9
    Were you evaluated for nasal pillows instead of a mask for CPAP or BiPap? Sleep apnea is not really well treated with just supplemental 02, as it does not prevent you from stopping breathing, which is why you are so sleepy all the time. Do you also have morning headaches?

    I assume you are not a US military veteran?? The VA has a wide range of experience in sustaining care needs of persons aging with SCI.

    Other centers that have special expertise in this include TIRR in Houston, Craig in Denver, and Santa Clara Valley Medical Center in CA. You might also look into Virginia Commonweath University's SCI Center (Richmond). Dr. McKinley there is well respected in the field.

    Do you use an abdominal binder and compression hose to help with your low blood pressure?


    (KLD)

  10. #10
    Senior Member chris-k's Avatar
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    Quote Originally Posted by SCIfor55yrs. View Post
    I have outlived all but 1 of the physiatrists who I worked with in my early days. We are too scattered around for anyone to get any significant experience.
    LOL! Me too.

    I had the good luck and privilege to be treated by Dr. Howard Rusk at NYU in the late 60's. He was already in his 60's. I was also treated by Dr. Richard Sullivan at Kessler in the 70's, but he died last year and was in his 80's. I met his daughter who is a PT.

    My current doctors are great technically and my care is generally good, but it's not the holistic approach I experienced in the past.

    Some other resources I have found:

    Diabetes and Spinal Cord Injury (2008)
    http://www.unitedspinal.org/publicat...l-cord-injury/

    UAB SCI Center (Always a good source of information)
    https://www.nscisc.uab.edu/PublicDoc...cts%202013.pdf (February 2013) Interesting read.

    http://www.uab.edu/medicine/sci/uab-...sci-infosheets

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