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Thread: New SCI - Surfers Myelopathy

  1. #1
    Junior Member Mousse's Avatar
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    New SCI - Surfers Myelopathy

    Hello everyone.

    I am a fairly new SCI and am still trying to adjust to my new life in a chair, and I wanted to say how helpful this site has been for me - it is a wealth of knowledge and is packed full of resources. I feel like I am learning so much more helpful information from this site compared to what I am learning in therapy. I highly respect my PT and the entire medical field for that matter, don't get me wrong, but there is no substitution for getting advice from someone who has lived it first hand!

    Before I get ahead of myself, let me give a brief bio. Yesterday marked my 5 month anniversary from when I was injured surfing in Maui, Hawaii. I have been diagonised with an extrememly rare SCI known as Surfers Myelopathy. The readers digest version of SM is that it is a non-traumtic (atraumtic) spinal cord injury cased by a hyper extension of the mid to low back, which makes for lots of swelling in my spinal canal, but no breaks in my spinal column, problems with my discs, or cuts in my spinal cord...why I am not walking, nobody knows. There are approximately 30 people within the last 15 years that have been diagnoised with this condition. In fact, the odds of winning the lottery are greater...lucky me and to bad I didn't play the lotter instead that day . I am optimistic and hoping for a full recovery, but is that only wishful thinking as I have not been given ANY type of prognosis at this time? I guess that is another draw back of having a rare condition; nobody wants to say one way or the other.

    My main question right now is if anyone ever heard of this type of SCI and, better yet, does anybody know of someone who has been given this diagnosis? I know that every level of injury is different as well as the healing process from person to person, but I just wish I had some timeline that I could reference so that I can compare. Is there an average timeline for return (ex. 6, 12, 24 months)? Or is it all just "wait and see"?

    Thanks for taking the time to read my post and I look forward to seeing what other great information people have to share.

    P.S. Never go surfing, it's overrated! It's like having to climb up a mountain before you can ski/snowboard down it and the sad thing is that's the best part about it.
    Last edited by Mousse; 07-27-2006 at 01:49 AM.

  2. #2
    I have not heard of this condition before now, but found a few articles you probably already know about below. It sounds very similar to the so-called "shampoo basin" syndrome which can cause people who are hyperextending their neck over a salon or barbershop wash basin to have either a stroke or spinal cord infarction (stroke).

    http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

    http://members.virtualtourist.com/m/2a792/bc8e7/8/

    http://www.spinejournal.org/pt/re/sp...856145!8091!-1

    http://hawaiiacep.com/MedicalCaseoftheWeek.html

    http://www.neurosurgery-online.com/p...856144!8091!-1

    No one knows at this point how much you might get back. It will be at least 2 years before you know what you might get back.

    Have you had a lot of return since your injury?
    What is your current neurologic level and ASIA scale of completeness?
    Where did you do your rehab?

    You may eventually change your mind about surfing. I have had a number of clients injured surfing (but from diving into sandbars or falls off their board) and some of them have returned to the sport. If you actually love it, it is still possible:

    http://www.liferollson.org

    (KLD)
    Last edited by SCI-Nurse; 07-27-2006 at 08:35 AM.

  3. #3
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    Welcome Mousse! So sorry about your injury! We are all playing the "waiting game"! It sucks, but don't ever give up! As far as surfing goes, my son would certainly argue with you on it's rating! He would do anything to be surfing again - he has a modified board and hopes to be out there soon - it just won't be the same as before, but just being in the ocean again will be heaven!

  4. #4
    welcome Mousse, sorry to hear about your injury. as KLD stated, up until around 24 mos., there's no telling what kind of return you may get. i'm curious as to what level you have been diagnosed.. good luck..





    Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

    If you ain't laughing, you ain't living, baby. Carlos Mencia

  5. #5
    mousse, sorry you joined the club of SCIers, but welcome to carecure.
    Daniel

  6. #6
    Junior Member Mousse's Avatar
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    Re:Surfers Myelopathy

    Quote Originally Posted by SCI-Nurse
    Have you had a lot of return since your injury?
    What is your current neurologic level and ASIA scale of completeness?
    Where did you do your rehab? (KLD)
    I do not consider it a lot of return from a functional stand point, but looking back at from when I was a few days post injury till now, I would say I have seen some decent gains in my core strength, upper leg strength, and better bowel/bladder control. So far, my hips are my strongest muscles below my injury and I can visibly move them against gravity. As for my quad, hams, and gluets, there are between a 1-2 grade and are a lot more visible when I do pool therapy. From the knee down I am only a trace, at best. As sensation goes I wasn't able to feel anything at first, but now I am starting to sense a mild to hard touch on almost all parts of my legs, but I can't sense hot, cold, or pain - sometimes I seems like I can feel the nerves in my calves and feet being stimulated, almost if they are trying to wake up, but it isn't consistent.

    The level of my injury was originally classified from T8 to T11 incomplete - the initial MRI showed massive swelling at 3 different spots between T8 and T12 - but from my last appointment with my Neurosurgeon he said that I was now more between a T11 and T12 incomplete with an ASIA grade of C. I still haven't fully researched the different letters of the ASIA scale and what they mean, but my sensation is still severly impaired. In fact, I went to play wheelchair tennis this past weekend and tried out another para's tennis chair and had my right foot almost wrappped behind the foot plate. If it wasn't for my fiancee catching it right away, I probably would have broken my angle and torn all of the ligaments as well.

    In response to your last question, SCI-Nurse, I am doing outpatient rehab at the HealthSouth facility in Albuquerque, NM. The case manager that I worked with in Maui said that my insurance company offers "first choice" and that I was able to pick any rehab facility in the nation, including any of the model facilities. I was very tempted to go Craig in Colorado, but after much consideration I felt that family and friends were just as an important part of rehab as is the rehab center and went to the one in my home town. I think I made the right choice because after speaking with another person who was diagnoised with SM 4 weeks prior to my injury (he did go to a model facility in Seattle), I learned that his therapy program wasn't very different than mine.

    Thank you for the links, I did read them all, and I will probably be posting more frequently as I continue through this journey.

  7. #7
    Thanks for the info. You can read an excellent article by Dr. Young about the ASIA scale here:

    http://sci.rutgers.edu/index.php?pag...nalLevels.html

    Please continue to particate and get active in our entire CC community.

    (KLD)

  8. #8
    Hi Mousse,

    This is my first post, and i discovered this site while researching for a term paper i am preparing regarding the epidemiology of spinal cord contusions and myelopathies.

    Almost 3 years ago i was involved in a similar incident to yours in Maui, and i suffered a Surfer's Myelopathy at L4-L5. I was quite lucky in that i was hospitalized within a couple of hours, and with administration of steroid treatments they were able to bring the swelling of the cord down. For about a week i had a loss of leg function, but it steadily returned, followed rather slowly by my sensation and proprioception.

    Upon returning to Canada (a week after the incident), i spent 2 weeks in a hospital here, where they kept trying to tell me that the hawaiian doctors were fools and instead i had contracted Transverse Myelitis, conveniently at the exact time i was surfing (WOW. even the MRI showing cord swelling had no effect on them)

    Today, after alot of physiotherapy and chiropractic work, i'd say i have almost all of my function back, though my reaction time etc. is a bit delayed compared to before hand.

    Just want to say to hang in there, and i think its awesome that you have someone that is sticking with you, to help you through the rough spots!

  9. #9
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    Hi Mousse,

    When I read your post, it kind of reminded me of my own experience, so I thought I'd share.

    My "non traumatic" SCI was caused by encephalomyloneuritis (brought on by a severe vaccine reaction, of all things 11 years agol. I was hospitalized for about four months. When I was discharged, I had no sensation or movement below my waist, no bladder or bowel control and I was told repeatedly that I would never walk again. I got so sick of hearing this, that I finally canceled the PT's and OT's that were coming to the house. I literally taught myself how to walk again in about three months. I am able to stand and walk, (well, hobble!) short distances with a cane. (I use a wheelchair for longer distances). My bladder control never came back, but I'm managing that with botox injections and Detrol LA. I still have quite a bit of neuropathic pain, and I've tried a number of meds for it. Recently I started Cymbalta, and I've responded really well to it.

    Anyway, I'm no neurologist, but with me it was right around this time frame - 5 months - that things started getting better. You sound like you're in much better shape than I was at this point, so I would think you might have a very good recovery! Now more than ever you need to keep a positive attitude and work as hard as you can. The other thing I think is important, (which doesn't get mentioned very often!) is to make sure you get as much rest and sleep as you can. I'm really a believer that this is critical for any kind of major healing. And yeah, being around your friends and family is important. I had a ten month old at the time of my injury. We learned how to walk together. (I fell down more!)

    Well, anyway, I had a much better recovery than any of my doctors expected. I hope my story will make you feel encouraged. Good luck!

  10. #10

    Surfer's Myelopathy

    My name is Don Armario. My 41 year old brother-in-law (Paul Herberth) was taking first time surfing lessons in Hawaii on July 11, 2007. He had gotten out of the water and sat on the beach to watch his children try to surf; when he tried to get up a short time later, he was unable to walk. He was taken to the hospital and diagnosed with surfer’s myelopathy. He has no feeling from his waist down. They started Paul on steroids after 4 or 5 days.

    On July18th he was taken to Santa Clara Valley Medical Center. The family thought once the swelling goes down he will get the feeling back in his legs and walk again. The more research we do, the more scared we become. The one comment the hospital made put this in a different light for me. They said they would prepare him for life in a wheel chair.

    After finding this website and reading the stories about Surfer’s Myelopathy and Mousse’s experience, it has helped my wife and I understand what is going on and what the future might hold for Paul and the family.

    We would love to hear from anyone with any additional information.


    Thank You.
    Last edited by Don Armario; 07-21-2007 at 01:37 AM.

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