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Thread: New SCI - Surfers Myelopathy

  1. #41
    Thanks for the info. I will get it together. Where do I send the survey for approval? We don't have a blog, so I am not sure how to post a link. The Reeves foundation used to have groups on their site but they have gotten rid of them.

  2. #42
    If you use a site like Survey Monkey (which you can use for free for one month with a limited number of questions), you can post a link to that survey here.

    https://www.surveymonkey.com/

    Just put it on the Survey forum, and one of the moderators will check it to be sure that it is legit. Include in your post that this was already discussed on the forum.

    (KLD)

  3. #43
    Two days ago my best friend, Travis, tried surfing for the first time. He was doing very well, catching waves and such, but felt a strange painful sensation in his back. He started feeling tingling in his legs so got out of the water to rest. A few minutes later, as he was walking to his car, he suddenly lost control of his legs and fell over. Travis immediately called an ambulance and was taken to the hospital.


    Today, the doctor of physical medicine quoted him a 4-8% chance of walking again in a years time. He also has a minor bacterial infection and has a sustained fever. Once he is stable, he is being transferred to rehabilitation center. We are all in shock about this diagnosis. I think he should get a 2nd opinion. Has anyone else been given a percentage in this situation?

  4. #44
    So sorry about your friend. Spinal cord infarctions (which is what we think happens with surfer myelopathy) often show improvement slowly over time, although complete return is unlikely. Did the PM&R physician give him an ASIA/ISNCSCI exam and both a level of injury and an AIS (ASIA impairment scale) score? If so, can you get that information?

    Where is your friend (country? state?). Where are they sending him for rehab? He should have been seen by a good neurologist in addition to the PM&R physician, and I would ask about hyperbaric oxygen therapy, although there is not a lot of good evidence that it helps. It would be worth a try. Does he have decent insurance?? Can you get him on-line here himself?

    (KLD)

  5. #45
    Quote Originally Posted by SCI-Nurse View Post
    So sorry about your friend. Spinal cord infarctions (which is what we think happens with surfer myelopathy) often show improvement slowly over time, although complete return is unlikely. Did the PM&R physician give him an ASIA/ISNCSCI exam and both a level of injury and an AIS (ASIA impairment scale) score? If so, can you get that information?

    Where is your friend (country? state?). Where are they sending him for rehab? He should have been seen by a good neurologist in addition to the PM&R physician, and I would ask about hyperbaric oxygen therapy, although there is not a lot of good evidence that it helps. It would be worth a try. Does he have decent insurance?? Can you get him on-line here himself?

    (KLD)
    His doctor gave him an ASIA A score, unfortunately, and they named the T12 vertebrae where the injury spot is. This was assessed before he was put on steroids (solu-medrol). The day of the injury was on Saturday but they didn't give him solu-medrol until Tuesday! I read that having this drug could be instrumental to early recovery. Before he was on it, he was in a lot of pain. The pain really subsided after the initial dose was given. Apparently, the doctor didn't give the drug immediately because "he didn't want to give my friend a false sense of hope" that it was going to cure his paralyzation. Isn't that incredible? /s


    We are in LA, California. They are sending him to Rancho Los Amigos Rehab center in Downey, CA hopefully tomorrow, if not, Monday.


    Is there anything you know of that needs to happen in this early crucial period that needs to happen to increase chances of recovery? We were told by a physician who did a surfers myelopathy study that "if recovery of function is going to happen it tends to occur during the first 3-5 weeks".We just want the best for our friend, this is very disheartening to see.

  6. #46
    Rancho is a good SCI rehab center, but it is a county hospital so he will have a bit of a challenge with sufficient staffing and other patients there who may be from a different background than his.

    Steroids are nearly always used for those with traumatic (not vascular) spinal cord insults, and even for traumatic injuries there are some serious questions about the actual benefit of their use.

    It is correct that any return is most likely to occur in the first 3-5 weeks, but with vascular injuries if some improvement occurs during this time, continued improvement can occur over the next 2 years.

    The T12 level would apply to the cord segment, not to the vertebral level. That low in the cord there is a big difference in the bone and the cord segments that correspond with them. The ASIA (ISNCSCI) exam determines the cord segment (not the bony) injury. This would be consistent with his sensory exam being normal to his groin but absent below that.

    Does he have decent insurance?? It is likely he will only get 3-4 weeks of inpatient rehab and then be discharged home. Continuing with outpatient therapy (at Rancho ideally) would be very important for him to maximize his benefits of rehabilitation therapies.

    (KLD)

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