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Ten frequently asked questions concerning cure of spinal cord injury

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    I just posted the FAQ #4: What Can I Do Now to Be Ready for the Cure?

    http://wiseyoung.wordpress.com/2009/01/13/217/

    This one was a tough one to write.

    Comment


      FAQ #4 Query

      Wise,
      Thank you for another informative and helpful article. I don't know how you find the time.

      I have a query regarding your section on Reversing Osteoporosis. I am a 45 y.o male and sustained a complete lesion (ASIA A) at T10-12 in April 2007 as a result of a 1 storey fall while sleep walking. Within 12 months of my injury I had regained isometric contraction of my hip flexors and extensors, glutes?, quads and hamstrings. I have had a bone density test done and it was reported that my femoral neck has a density of 0.738 g/cm2 (T-score of -1.4) and lumbar spine has a density of 1.169 g/cm2 (T-score of 0.7). My total hip has a T-score of -2.0. My calcium intake and sun exposure are adequate. My endocrine specialists has recommended that I have intravenous treatment of Zometa (?bisphosphonate alendronate). However, I am concerned that it may be too late for this treatment to have any significant effect on my bone density and that there may be no benefit in having the treatment. Your advice on this would be appreciated.

      I am also trying to organise having some gutter spints fabricated so that I can at least have a go at standing in the pool. I am also able to kneel on all-fours which I do for about 30 minutes a day and I have a powered exercise bike which I have a go on for about 30 minutes each day. Unfortunately there are limited facilities (and lack of acceptance that it is benificial) in Australia for supported treadmill or FES. If you have any suggestions regarding this program or any additional things that I could be doing to make sure I'm ready when the time comes, it would be appreciated.

      I also have a query regarding my injury classification, and infact understanding what has been damaged, after reading your article on 'Spinal Cord Injury Levels and Classification'. Before reading this article I was not aware of the potential complications with having a lower thoracic injury. Additional to my motor function discussed above, I have sensory function (pin prick) down to my belly button and on my left side it goes down to my groin and left hip bone. I also have some sort of sensation in my lower bowel (I can feel when it need emptying), but no sensory function at sphincter. I have severe neuropathic pain (burning) from my hips to my knees, with very sharp pain (stabbing) in my right hip. I have regular spasms in my legs right down to my toes, but they are not severe. From this information is it possible to determine the damage that has been done? If so would you be able to diagnose for me (ie additional to my spinal cord damage, have I damaged the conus or spinal roots). If not what additional information is required and if I am able to get this info, would you be able to diagnose for me?

      Thanks in advance for your time. It is very much appreciated.
      "Wheelie Wanna Walk!"

      Comment


        Originally posted by Geoman View Post
        Wise,
        Thank you for another informative and helpful article. I don't know how you find the time.

        I have a query regarding your section on Reversing Osteoporosis. I am a 45 y.o male and sustained a complete lesion (ASIA A) at T10-12 in April 2007 as a result of a 1 storey fall while sleep walking. Within 12 months of my injury I had regained isometric contraction of my hip flexors and extensors, glutes?, quads and hamstrings. I have had a bone density test done and it was reported that my femoral neck has a density of 0.738 g/cm2 (T-score of -1.4) and lumbar spine has a density of 1.169 g/cm2 (T-score of 0.7). My total hip has a T-score of -2.0. My calcium intake and sun exposure are adequate. My endocrine specialists has recommended that I have intravenous treatment of Zometa (?bisphosphonate alendronate). However, I am concerned that it may be too late for this treatment to have any significant effect on my bone density and that there may be no benefit in having the treatment. Your advice on this would be appreciated.

        I am also trying to organise having some gutter spints fabricated so that I can at least have a go at standing in the pool. I am also able to kneel on all-fours which I do for about 30 minutes a day and I have a powered exercise bike which I have a go on for about 30 minutes each day. Unfortunately there are limited facilities (and lack of acceptance that it is benificial) in Australia for supported treadmill or FES. If you have any suggestions regarding this program or any additional things that I could be doing to make sure I'm ready when the time comes, it would be appreciated.

        I also have a query regarding my injury classification, and infact understanding what has been damaged, after reading your article on 'Spinal Cord Injury Levels and Classification'. Before reading this article I was not aware of the potential complications with having a lower thoracic injury. Additional to my motor function discussed above, I have sensory function (pin prick) down to my belly button and on my left side it goes down to my groin and left hip bone. I also have some sort of sensation in my lower bowel (I can feel when it need emptying), but no sensory function at sphincter. I have severe neuropathic pain (burning) from my hips to my knees, with very sharp pain (stabbing) in my right hip. I have regular spasms in my legs right down to my toes, but they are not severe. From this information is it possible to determine the damage that has been done? If so would you be able to diagnose for me (ie additional to my spinal cord damage, have I damaged the conus or spinal roots). If not what additional information is required and if I am able to get this info, would you be able to diagnose for me?

        Thanks in advance for your time. It is very much appreciated.
        Geoman,

        As I pointed out in the article, at least two clinical trials (one blinded randomized) suggest that alendronate (a commonly used bisphosphonate) is restoring calcium levels in the bone. The trial looked at calcium levels and did not look at bone strength, which I think would be a more important measure. One concern is that if one restores just calcium, it may make the bone more brittle. At the same time, standing exercises don't seem to change the calcium content of bones but I am afraid that many of the negative studies involved people standing 30 minutes a day for 3 days a week and they looked at only several months. The experience from astronauts who developed bone loss from being in space suggests that it takes years for an astronaut who is walking around many hours a day to regain all their calcium levels. In any case, if I were you, I would be taking both the bisphosphonate and standing.

        Gutter spints? The way that I have seen people stand in the pool is with the following. They velcro weights around their ankles so that their feet stay on the bottom of the pool. They were a flotation vest so that the upper body stays afloat. Then they attach a rubber tubing to each of their knee and pull up on the tubing to lift the knees as they "walk" around the pool.

        It sounds as if you have a lower thoracic T10 level on your left and perhaps an L1 on your right. Do you have hip flexors?

        Wise.

        Comment


          Originally posted by Wise Young View Post
          Geoman,

          As I pointed out in the article, at least two clinical trials (one blinded randomized) suggest that alendronate (a commonly used bisphosphonate) is restoring calcium levels in the bone. The trial looked at calcium levels and did not look at bone strength, which I think would be a more important measure. One concern is that if one restores just calcium, it may make the bone more brittle. At the same time, standing exercises don't seem to change the calcium content of bones but I am afraid that many of the negative studies involved people standing 30 minutes a day for 3 days a week and they looked at only several months. The experience from astronauts who developed bone loss from being in space suggests that it takes years for an astronaut who is walking around many hours a day to regain all their calcium levels. In any case, if I were you, I would be taking both the bisphosphonate and standing.

          Wise.
          Thank you

          Originally posted by Wise Young View Post
          Geoman,

          Gutter spints? The way that I have seen people stand in the pool is with the following. They velcro weights around their ankles so that their feet stay on the bottom of the pool. They were a flotation vest so that the upper body stays afloat. Then they attach a rubber tubing to each of their knee and pull up on the tubing to lift the knees as they "walk" around the pool.

          Wise.
          Thanks, I'll give it a go. The gutter splints that they are talking about fitting for me are simply two peices of formed plastic (one at front of knee and one at back) extending from mid-thigh to mid-calf and strapped together with velcro. Their function is to lock the knee in extended position.

          Originally posted by Wise Young View Post
          Geoman,


          It sounds as if you have a lower thoracic T10 level on your left and perhaps an L1 on your right. Do you have hip flexors?

          Wise.
          My MRI showed dislocation of T11 and T12 and compression of the T12 vertebrae (T12 was pushed infront of T11) causing complete transection of the cord at T11/T12 except for perhaps a few strands. They also reported odema above the injury level, but I guess this is fairly common. Within 12 months of my injury I regained isometric contraction and slight feeling (numbness) in my hip flexors and extensors, glutes, quadriceps and hamstrings. Of these my hip flexors have probably come back the most. Any help you can give me regarding my injury level will be appreciated.
          "Wheelie Wanna Walk!"

          Comment


            I dont know about impossible. I have seen some very paralyzed dogs with shrunken muscles below injury make full recovery after surgery. like their was no pain, or reflexes, below rupture, no bowel and bladder, and they still recovered.
            what ever they do for dogs must not be aproved for people yet. though I had a dog two operations two years apart, eight vertabre replaced. and the cord healed, and fuction relearned. she lived to be an old dog with a scar running from the base of her neck to her tail. this was in 1982. I wondered then why they couldnt do that for people. I think it is very possible to be cured. the body wants to be whole.

            Comment


              Getting Ready For A Cure

              My 17 year old son is being released from inpatient rehab this Friday. I am a bit lost on what he should do for his therapy once we go home. Does he have outpatient PT/OT? Do we try to purchase/rent a standing device? Is this something PT/OT will continue with him as well as FES (which hasn't worked with him)? His injury was T5-6, ASIA A. I just feel he must stay on a structured program to be "ready for the cure." However, the focus has only been on living in a wheelchair which is what we need yes but of course we are still hoping to be in shape when, not if, the time comes for a cure. He also had activity in right leg conducive to HO and is taking didronel so calcium supplements are not recommended at this time. From the question 4 answer, I summed it up that standing and FES were two of the most important factors as far as activity is concerned. I guess my position is that everyone sees him as a complete SCI and they do not seem to try anything other than teaching him transfers and bowel/bladder/skin care. Am I expecting too much although he is a complete SCI?

              Comment


                Originally posted by MzzzKathee View Post
                My 17 year old son is being released from inpatient rehab this Friday. I am a bit lost on what he should do for his therapy once we go home. Does he have outpatient PT/OT? Do we try to purchase/rent a standing device? Is this something PT/OT will continue with him as well as FES (which hasn't worked with him)? His injury was T5-6, ASIA A. I just feel he must stay on a structured program to be "ready for the cure." However, the focus has only been on living in a wheelchair which is what we need yes but of course we are still hoping to be in shape when, not if, the time comes for a cure. He also had activity in right leg conducive to HO and is taking didronel so calcium supplements are not recommended at this time. From the question 4 answer, I summed it up that standing and FES were two of the most important factors as far as activity is concerned. I guess my position is that everyone sees him as a complete SCI and they do not seem to try anything other than teaching him transfers and bowel/bladder/skin care. Am I expecting too much although he is a complete SCI?
                MzzzzK, I agree that it would be good if everybody had access to a structured and aggressive rehabilitation program that pushes them to stand and walk. I have seen such programs in China and am impressed by their results. In the U.S., it is an uphill climb because the deep pessimism concerning recovery from spinal cord injury.

                Recent studies suggest that over 90% of people with incomplete spinal cord injury can recover unassisted ambulation. Yet, many physiatrists did not encourage people with incomplete spinal cord injury to walk after their injury and many people with incomplete spinal cord injury did not recover to their full potential.

                There are various non-medical programs that provide a structured exercise program for walking and exercise but unfortunately these programs are expensive and are not necessarily covered by insurance. The evidence that standing, intensive repetitive walking exercise, and functional electrical stimulation is beneficial is slowly accumulating.

                Wise.

                Comment


                  Originally posted by jody View Post
                  I dont know about impossible. I have seen some very paralyzed dogs with shrunken muscles below injury make full recovery after surgery. like their was no pain, or reflexes, below rupture, no bowel and bladder, and they still recovered.
                  what ever they do for dogs must not be aproved for people yet. though I had a dog two operations two years apart, eight vertabre replaced. and the cord healed, and fuction relearned. she lived to be an old dog with a scar running from the base of her neck to her tail. this was in 1982. I wondered then why they couldnt do that for people. I think it is very possible to be cured. the body wants to be whole.
                  Jody, I agree. Rats are like dogs in that they don't know that they can't walk. They will keep trying. Many people have recovered from spinal cord injury, often with very severe and multilevel vertebral injuries.

                  Unfortunately, people are vulnerable to discouragement. There are doctors and other professionals who tell people in the hospital that they will never walk again and should not even try. This has a strong nocebo effect and discourages recovery.

                  Wise.

                  Comment


                    Originally posted by Geoman View Post
                    Thank you



                    Thanks, I'll give it a go. The gutter splints that they are talking about fitting for me are simply two peices of formed plastic (one at front of knee and one at back) extending from mid-thigh to mid-calf and strapped together with velcro. Their function is to lock the knee in extended position.



                    My MRI showed dislocation of T11 and T12 and compression of the T12 vertebrae (T12 was pushed infront of T11) causing complete transection of the cord at T11/T12 except for perhaps a few strands. They also reported odema above the injury level, but I guess this is fairly common. Within 12 months of my injury I regained isometric contraction and slight feeling (numbness) in my hip flexors and extensors, glutes, quadriceps and hamstrings. Of these my hip flexors have probably come back the most. Any help you can give me regarding my injury level will be appreciated.
                    Geoman,

                    What I am referring to is the neurological level. The ASIA classification system identifies the neurological level as the lowest contiguous intact level. So, if you have a T10, that means that your T10 dermatome has normal pinprick and touch sensation. Your injury level may be at T11.

                    You can easily determine you level from the ASIA classification chart by examining yourself.

                    Wise.

                    Comment


                      Originally posted by MzzzKathee View Post
                      I guess my position is that everyone sees him as a complete SCI and they do not seem to try anything other than teaching him transfers and bowel/bladder/skin care. Am I expecting too much although he is a complete SCI?
                      MzzKathee, I know EXACTLY how you feel. My 17 yo son has been home for almost a month and is expected to go back to rehab once his brace has been removed. We have built our own stall bars, bought equipment to continue to develop more upper body strength and have a therapist coming twice a week at hom.

                      I have mixed emotions about returning to the same rehab as I feel they only focused on the transfers, range of motion exercises etc.. he was never placed on a bike, only on the tilt table twice and stall bars once in the entire month he was there. I'm so frustrated, I know there MUST be more that can be done. Do we go back for more of the same OR do we find someone, somewhere that will focus on the possibilties?????

                      Comment


                        Originally posted by Wise Young View Post
                        MzzzzK, I agree that it would be good if everybody had access to a structured and aggressive rehabilitation program that pushes them to stand and walk. I have seen such programs in China and am impressed by their results. In the U.S., it is an uphill climb because the deep pessimism concerning recovery from spinal cord injury.

                        Recent studies suggest that over 90% of people with incomplete spinal cord injury can recover unassisted ambulation. Yet, many physiatrists did not encourage people with incomplete spinal cord injury to walk after their injury and many people with incomplete spinal cord injury did not recover to their full potential.

                        There are various non-medical programs that provide a structured exercise program for walking and exercise but unfortunately these programs are expensive and are not necessarily covered by insurance. The evidence that standing, intensive repetitive walking exercise, and functional electrical stimulation is beneficial is slowly accumulating.

                        Wise.

                        yes very expensive the beyond theraphy @# shepards in atl is 750 a week i just can/t afford it but ... yet i am asia c with flickers in hip flexors , quads and qluets where do you get the money for rehab

                        Comment


                          Originally posted by vjls View Post
                          yes very expensive the beyond theraphy @# shepards in atl is 750 a week i just can/t afford it but ... yet i am asia c with flickers in hip flexors , quads and qluets where do you get the money for rehab
                          vjls, that is something that I have been thinking a lot about. It is not enough that we show that certain therapies are effective in restoring function. We have to make sure that the therapies are affordable and that there is insurance coverage for them. Wise.

                          Comment


                            rehab

                            mzz/akele/vjls

                            in reply to rehab, i to went thru the rehab clinics that knew very little re sci patients. the best thing i found was project walk and there take home program. with minimum costs you can set up basic equip in your home and get the most results.............this was my experience and the people and there knowlege at pw is incredibale. hope this helps.

                            Comment


                              Originally posted by Doug Wilburn View Post
                              mzz/akele/vjls

                              in reply to rehab, i to went thru the rehab clinics that knew very little re sci patients. the best thing i found was project walk and there take home program. with minimum costs you can set up basic equip in your home and get the most results.............this was my experience and the people and there knowlege at pw is incredibale. hope this helps.
                              Doug, I agree. There is a need for out-of-the-box thinking and a move away from the medical model which is exorbitantly expensive. There is also much in China, India, and Brazil that we can learn from because much of the rehabilitation is done by the families there and they are very innovative with cost-saving devices. Wise.

                              Comment


                                Dr. Young, I had severe HO in my hips. I had hip resection surgery in 2005 to regain my range of motion. My question is would bisphosphonate alendronate be OK for me?. C4 Asia C. incomplete.

                                I would also like to thank you for your tireless efforts!

                                Mike
                                Mike P.

                                Comment

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