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54 years post C 5/6 SCI

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  • 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
    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.

    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

    Comment


    • #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.

      Comment


      • #4
        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

        Comment


        • #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/

          Comment


          • #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.

            Comment


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

              Comment


              • #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!!

                Comment


                • #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)
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                  • #10
                    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

                    Comment


                    • #11
                      Originally posted by H3llz_Angel2 View Post
                      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.


                      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.
                      Hello HA,

                      (You take my 47 years post and your 54 years post and SCIfor55's 58 years and add a couple more and we have about 200 years experience.)

                      1) A couple of years ago, I noticed that I had developed spasms more in my right leg and just below the kidney on my left side. These are annoying and usually strike when I lean hard to my left or when I am laying in bed a while without moving.

                      2) I was sleep tested when oximeter indicated my oxygen level was in the 60's when sleeping. I am now using a BiPAP machine. Because of the high settings, the full face mask was a problem with leaking and creating a loud noise when leaking. I now use a use a nasal pillow, like KLD recommended to you and have no more "leaking" air problems.

                      3) I gained weight but not massively. I did however change to a lower calorie diet and took off about 30 lbs.

                      4) I did not experience the sweating you described. I did, for a period of time, sweat profusely at night but not during the day.

                      5) The dozing/nodding off was partly caused by the sleep apnea. In late 2011, I was diagnosed by diabetes. Low blood glucose (hypoglycemia) gives me the symptoms of kaleidoscope vision, dizziness, headache, drowsiness and sweating...a lot of sweating. Much of what you described was caused by my uncontrolled diabetic condition. I now have it under control and all the symptoms have vanished.

                      Note: My last ER visit, 2010, my BP was 53/39 and they had to raise my blood pressure before they could treat me.

                      Good luck and I hope this helps.
                      Last edited by Millard; 05-31-2013, 03:14 PM. Reason: Re-size.
                      Millard
                      ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne

                      Comment


                      • #12
                        Do any doctors actually have "up-to-date' data on a SCI patient? Personally, my answer is NO. Maybe for a person recently injured, but those injured for period of time, I swear they do not. I have idiots I swear using 5+ year old data. I'd love to crack each one of them in the head with a baseball bat and make them refund all Medicare charges they did. Excuse the language but this REALLY FUCKING PISSES ME OFF! I am 10+ years post accident, trying get my license back and swear they are using 5+ year old data.

                        Comment


                        • #13
                          38 years post, you guys made my day - thank you

                          I am sorry you are having health issues, but you have made me feel like a kid again.

                          Hang in there...

                          Comment


                          • #14
                            The only doc at NRH who has PPS himself no longer treats patients that I know of just does research in the basement and my opinion on the rest agrees with yours. I'd go with McKinley down at Richmond. I was in a clinical trial down there in 96/97 and for SCI he impressed me.

                            And what was a basic day's diet for you guys who lost weight and any exercise with it? I need to drop about 15 pounds. My PCP out there never did get a scale for wheelers but he added a bariatric one..
                            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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