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Thread: New SCI - Surfers Myelopathy

  1. #11
    Welcome to our site. I have edited your post to remove your personal e-mail. Members can send you a private message on the forums. Posting your e-mail address opens you up to spam, weirdos and possibly worse.

    Please ask questions. No one can say how much he will get back, or if he will, but SCVMC is a decent SCI rehab center. Learn as much as you can from them, prepare for home discharge, but don't give up hope for improvement. Come here as needed for questions, and get him on-line to our community as soon as possible.

    (KLD)

  2. #12
    Quote Originally Posted by Mousse
    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.
    Welcome to carecure. There have been several articles about surfer's myelopathy including this one from Thompson, et al., in 2004.

    [*] Thompson TP, Pearce J, Chang G and Madamba J (2004). Surfer's myelopathy. Spine 29: E353-6. STUDY DESIGN: The authors reviewed a series of nontraumatic spinal cord injuries associated with surfing lessons. OBJECTIVES: To characterize a unique syndrome of paraplegia/paraparesis to improve clinical recognition, treatment, and prevention. SUMMARY OF BACKGROUND DATA: Surfer's myelopathy is a previously unreported nontraumatic spinal cord injury that affects inexperienced surfers. Nine patients with paraparesis/paraplegia were evaluated and treated after nontraumatic surfing events. METHODS: An office-based registry tracked patients with surfer's myelopathy between July 2001 and December 2002. A retrospective review of hospital records searched for additional patients. Nine cases of surfer's myelopathy are retrospectively analyzed to characterize the incidence, risk factors, and outcome. The literature related to surfing injuries is reviewed. RESULTS.: Nine patients were detected with surfer's myelopathy between June 1998 and January 2003. The average age was 25 years. Most patients presented with back pain, paraparesis, and urinary retention. Other presenting symptoms included paraplegia, hypesthesia/hypalgesia, and hyperesthesia. At the time of discharge, three patients had a complete recovery and four patients had mild weakness without sensory deficits. Three in this group had residual urinary retention. One patient remained paraplegic. All patients had abnormal signal change in the lower thoracic spinal cord by magnetic resonance imaging. CONCLUSION: Surfer's myelopathy is a nontraumatic paraparesis/paraplegia that affects first-time surfers. Although most patients have a complete or near-complete recovery, complete paraplegia has occurred. Department of Neurosurgery, Straub Clinic & Hospital, Honolulu, Hawaii. tthompson@biltmorecomm.com http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15303045
    News articles about this phenomenon include

    http://starbulletin.com/2005/03/27/news/story2.html
    or first-time Waikiki surfers,
    repeatedly arching the back for
    hours in rare instances restricts
    blood to the spine
    Myelopathy warning signs

    By Helen Altonn
    haltonn@starulletin.com

    Sherwin Hiraoka said he had "the time of my life" when he rented a longboard and surfed for the first time at Waikiki Beach.

    INFO WANTED
    Dr. James Pearce would like to hear from anyone who thinks he or she had surfer's myelopathy after the first time out on the board. Call 522-4476.

    But his first waves were also his last.

    Hiraoka, now 26, didn't have an accident during his August 2002 outing, yet he still suffered a rare spinal-cord injury that Straub Clinic & Hospital doctors have named "surfer's myelopathy."

    Dr. James Pearce, a Straub neurologist, said the potentially debilitating injury is associated with first-time surfers. Pearce sees several cases a year and said the patients all come from Waikiki and have a similar story.

    <more>
    Here is a link to a recent powerpoint presentation on the subject
    http://www.usafp.org/USAFP-Lectures/...athy-Cheng.ppt

    Wise.

  3. #13
    wow, I've never heard of this and my brother is a surfer. He just had surgery for surfer's ear and now I have to warn him about this!

    I went Santa Clara for rehab 25 years ago, he's at a good facility. Good luck to you guys.
    Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

  4. #14

    Smile Surfers Myelopathy

    Mousse,


    I wanted to start out by saying I am truly sorry about your situation but do not give up hope. I am in the hospital now typing this post looking for the same answeres as you are.
    I was surfing in Waikiki last saturday August 18th 2007. when my back started hurting. I walked back to the hotel to lay down and placed ice on my sore back. After an hour I got up to go to the restroom when my legs simply gave out. I was diagnosed with our Rare (whatever I just think it is often misdiagnosed) surfers Myelopathy at T5 and T6.
    I am now in Presbyterian hospital in Dallas where a team of Neurologist are working on me. There was lenghty discussions about using steroids but the disicion was made to NOT use steroids. My neurologist believed this could actually make things worse. They simply prescribed lots of rest, theropy, and anti-inflamitory medication.
    I am Extremely excited to state that I am up and walking (hobbling) already with the use of a walker after not being able to wiggle a toe 5 days ago. I have physical theropy app. 5 hours every day. I still can't urinate but I am scheduled to see an urologist tomorrow. I know I am going to have a full recovery. I will accept nothing less.
    I have been researching this nonstop since my injury and there is about an 80% recovery rate. All patience recovered at diffrent times and to diffrent extents but many people are walking again after not walking for several months.
    While I was in Hawaii my neurologist was Dr. James Pearce. He gave me a copy of a research he performed at the Straub hospital in Honolulu. There is great detail about our illness including a 9 patient study. 8 of the 9 pateints walked again. Only 1 remained paralized. This study is protected under copyrights so I can't reproduce but if you will contact the Straub hospital and explain your situation I am sure they will get you a copy. I beleive this will make you feel more optimistic about your situation. I was also asked by Dr. Pearce to appear in an ABC DATELINE Special about this injury. He did not state when it would be but he wanted to know if I would participate. I said definatly. The word needs to get out about this horrible injury. If I would have known what I know today I would have not surfed or at least I would not have pushed myself as hard as I did to catch as many waves as possible in my 1 hour time slot.
    I truly believe 3 things helped me recover and they will help you as well. 1st I never asked if I would walk it was only when will I walk. Mousse, you will WALK again. Second, Theropy I nearly passed out simply trying to make my big toe move. You must start small and push, push, and keep pushing MENTALLY until the toe moves then keep the movement familiar. I could not wiggle a toe for 5 days. Once I made the mental connection with my big toe it seemed like the flood gates opened and my recovery took off. 5 days after I moved my toe I am know walking with a walker. HARD physical theropy 5 hours a day and at least 10 hours of sleep every night. They are giving me sleeping medicine to ensure I get plenty of rest. Last beleif in a higher power. I am not going to preach but simply beleiving in God and insisting he help me walk again. I know I am rambling but I chose to beleive that you and I will both walk again. We can meet in Hawaii and have a surfboard burning party with others who suffer this jacked up injury. Some reading that I think will intrest you.
    http://starbulletin.com/2005/03/27/news/story2.html
    The hospital gave me another report but when I go to the web site it requires a password. Maybee you will have more luck.
    http://gateway.tx.ovid.com/gw1/ovidweb.cgi
    Please ignore my bad spelling. The site would not let me perform spell check

    Good luck Mousse

  5. #15

    Smile Magnificent Megan

    My 15 year old neice Megan Herrington has been diagnosed with Surfers Myelopathy.She wasn't surfing,she was sunbathing and was startled with a spray of cold water(she was lying on her stomach).She jumped up and hyper-extended her back.Within 20 minutes she was paralyzed from the waist down. This happened on August 6th. She was at UCSF for 2 weeks and put through test after test until they came up with this rare diagnosis.After telling her parents they could do no more for her clinically,they sent her to Children's Hospital in Madera,Ca. She has been there to this day. She has PT and OT twice a day. The doctors are saying she is doing so well,she may come home in two weeks. We are hoping for and will only accept a full recovery.She is an AMAZING person! We are all scratching our heads(and I'm sure the Dr's are too)how just one tweaked movement could have caused such a trauma to her spine!She has been issued a wheelchair and the PT's are preparing her for the worst case scenario.I just hope they aren't sending her home too soon. The UCSF Dr's say this is one for the books. They are calling it Surfer's Myelopathy while sunbathing.They have asked her to come back in December and tell her story to their colleagues.We hope she will be walking through their doors! She has the support of a loving family and our prayers are said every night for a full recovery.
    Last edited by ronda mcwhorter; 09-01-2007 at 11:14 PM.

  6. #16
    Quote Originally Posted by ronda mcwhorter
    My 15 year old neice Megan Herrington has been diagnosed with Surfers Myelopathy.She wasn't surfing,she was sunbathing and was startled with a spray of cold water(she was lying on her stomach).She jumped up and hyper-extended her back.Within 20 minutes she was paralyzed from the waist down. This happened on August 6th. She was at UCSF for 2 weeks and put through test after test until they came up with this rare diagnosis.After telling her parents they could do no more for her clinically,they sent her to Children's Hospital in Madera,Ca. She has been there to this day. She has PT and OT twice a day. The doctors are saying she is doing so well,she may come home in two weeks. We are hoping for and will only accept a full recovery.She is an AMAZING person! We are all scratching our heads(and I'm sure the Dr's are too)how just one tweaked movement could have caused such a trauma to her spine!She has been issued a wheelchair and the PT's are preparing her for the worst case scenario.I just hope they aren't sending her home too soon. The UCSF Dr's say this is one for the books. They are calling it Surfer's Myelopathy while sunbathing.They have asked her to come back in December and tell her story to their colleagues.We hope she will be walking through their doors! She has the support of a loving family and our prayers are said every night for a full recovery.
    I am a Fire Fighter in Turlock - about 5 miles from the above location. I logged onto this forum trying to learn more about this accident. I have been a FF now for almost 35 years and have NEVER heard of anything like this. My heart goes out to all and esp to Megan and her family. Information is Power - I wish everyone good luck in the future...

  7. #17

    Smile My son has Surfer's myelopathy

    Hi Mousse. My son and his brother took surfing lessons in Maui over New Year's. My 16 year old came out of the water and said his legs were cramping. We thought he was dehydrated; he is long and lean and not the best eater. About an hour later, he said he couldn't feel his toes. We rushed him to Maui Memorial where they gave him steroids. He is still paralyzed from the belly button down with no sensations either. He has no bowel or bladder control and nothing has come back in about 4 months so far. When did you start to get some improvement? Can I ask how old you are?
    We have been given a similar diagnosis...his body has to heal
    Our original timeline was 3 months to know what he will get back. After many MD's and PT's and OT's, they now say recovery is one to two years.
    What vendor did you use for your surfing lesson? Did you fall off the board and cause the injury? For my son, the water was very calm and he was lying on the board waiting for a decent wave...never fell off, just lay in that one position too long. They say he is T-7 on the left and T-12 on the right and ASIA A complete. He also has the perfect spinal column, etc like you.
    Take a look at The Miami Project to Cure Paralysis (www.thebuonicontifund.com/x69.xml) I have applied for my son. A bit of positive news is that to be a research candidate, the injury must be 1 year old(to me that says give your body a year to heal), but I applied so that if he is not 100% recovered, I hope that he will be at the front of the line for a research study candidate. Stay healthy and upbeat. My son has a strong attitude and he is trying to stay positive

  8. #18
    I think that I have posted on this subject before. Here are some abstracts of recent studies
    1. Aviles-Hernandez I, Garcia-Zozaya I and DeVillasante JM (2007). Nontraumatic myelopathy associated with surfing. J Spinal Cord Med. 30: 288-93. University of South Florida, College of Medicine, Tampa, Florida, USA. BACKGROUND/OBJECTIVE: Ischemic nontraumatic spinal cord injury associated with surfing is a novel diagnosis believed to be related to prolonged spine hyperextension while lying prone on the surfboard. Only 9 cases have been documented. This report features possible risk factors, etiology, diagnostic imaging, and outcomes of surfer's myelopathy. DESIGN: Case report. RESULTS: A 37-year-old man developed T11 American Spinal Injury Association (ASIA) A paraplegia shortly after surfing. The clinical history and magnetic resonance imaging findings were compatible with an ischemic insult to the distal thoracic spinal cord. Our patient did not have any of the proposed risk factors associated with this condition, and, contrary to most reports, he sustained a complete spinal cord lesion without neurological recovery by 8 weeks post injury. CONCLUSIONS: Surfer's myelopathy, because of its proposed mechanism of injury, is amenable to medical intervention. Increased awareness of this condition may lead to early recognition and treatment, which should contribute to improved neurological outcomes.
    2. Jablecki CK and Garner S (2000). Neurological complications of windsurfing (sailboarding). Semin Neurol. 20: 219-23. Department of Neurosciences, University of California San Diego Medical School, USA. This article presents a brief history of windsurfing, a relatively new recreational and competitive sport activity also known as sailboarding; a brief summary of physiologic studies of windsurfers; and a review of windsurfing injuries with a focus on the neurological complications of windsurfing.
    3. Kalogeromitros A, Tsangaris H, Bilalis D and Karabinis A (2002). Severe accidents due to windsurfing in the Aegean Sea. Eur J Emerg Med. 9: 149-54. Department of Emergency and Critical Care Medicine, General Hospital of Athens G. Gennimatas, Greece. Windsurfing is a popular sport and has recently become an Olympic event. As an open-air water activity that requires the participant to be in perfect physical condition, windsurfers may be prone to accidents when certain basic rules or procedures are violated. The current study monitored severe injuries due to windsurfing over a period of 12 months in the Aegean Sea in Greece. Our study revealed 22 cases of severe accidents due to windsurfing, with a wide range of injuries including head injuries, spinal cord injuries, and severe fractures of the extremities. Prolonged hospitalization, severe disability and two deaths occurred as consequences of these accidents. The study examined the characteristics of these patients and the possible risk factors and conditions associated with the accidents. We also focused on the most common types of injuries and reviewed the mechanisms that may provoke them. Water sports and particularly windsurfing represent a major challenge for the emergency medical system, especially in the Aegean Sea. Hundreds of islands, kilometres of isolated coasts, millions of tourists, an extended summer period and rapidly changing weather create conditions that constantly test the efficacy of the emergency services. The development of an appropriate infrastructure and maximum control of the risk factors causing these accidents could reduce the morbidity and mortality that, unfortunately but rather predictably, accompany this popular summer activity.
    4. Scher AT (1995). Bodysurfing injuries of the spinal cord. S Afr Med J. 85: 1022-4. Department of Radiology, Tygerberg Hospital, W. Cape. In a group of 104 patients paralysed as a result of injury while swimming or diving, 3 patients were identified in whom the injury was sustained during bodysurfing. The mechanism of the injury and the clinical and radiological findings in this group differ markedly from the findings in the 101 patients paralysed after diving into shallow water. The 3 patients were significantly older with a mean age of 46 years. No fracture or dislocation of the cervical spine was present, but evidence of osteo-arthrosis was present in all cases. The pattern of spinal cord injury was that of incomplete paralysis consistent with the central cord syndrome. This combination of findings suggests that the mechanism of injury was forced hyperextension of the head and neck due to the surfers having been caught up in turbulent wave action and driven into the sandy sea bottom.
    5. Thompson TP, Pearce J, Chang G and Madamba J (2004). Surfer's myelopathy. Spine. 29: E353-6. Department of Neurosurgery, Straub Clinic & Hospital, Honolulu, Hawaii. tthompson@biltmorecomm.com. STUDY DESIGN: The authors reviewed a series of nontraumatic spinal cord injuries associated with surfing lessons. OBJECTIVES: To characterize a unique syndrome of paraplegia/paraparesis to improve clinical recognition, treatment, and prevention. SUMMARY OF BACKGROUND DATA: Surfer's myelopathy is a previously unreported nontraumatic spinal cord injury that affects inexperienced surfers. Nine patients with paraparesis/paraplegia were evaluated and treated after nontraumatic surfing events. METHODS: An office-based registry tracked patients with surfer's myelopathy between July 2001 and December 2002. A retrospective review of hospital records searched for additional patients. Nine cases of surfer's myelopathy are retrospectively analyzed to characterize the incidence, risk factors, and outcome. The literature related to surfing injuries is reviewed. RESULTS.: Nine patients were detected with surfer's myelopathy between June 1998 and January 2003. The average age was 25 years. Most patients presented with back pain, paraparesis, and urinary retention. Other presenting symptoms included paraplegia, hypesthesia/hypalgesia, and hyperesthesia. At the time of discharge, three patients had a complete recovery and four patients had mild weakness without sensory deficits. Three in this group had residual urinary retention. One patient remained paraplegic. All patients had abnormal signal change in the lower thoracic spinal cord by magnetic resonance imaging. CONCLUSION: Surfer's myelopathy is a nontraumatic paraparesis/paraplegia that affects first-time surfers. Although most patients have a complete or near-complete recovery, complete paraplegia has occurred.

  9. #19
    Junior Member
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    We went on vacation on july 18,2006 to maui and my 12 year old son wanted to take surfing lessons I said no , but later gave in and signed him up he started the lesson and about 1.5 hour into it he came out of the water complaing of back pain he could barely walk so we took him to maui memorial and they said he has SURFERS MYELOPATHY and he has a 50/50 chance of ever walking again , they gave him steriods and we stayed in maui for 1 week awaiting his recovery, still in a wheelchair we flew back to our home town SAN DIEGO,CA. and were admitted to childrens hospital with a lot of ot and pt he finally started walking again it was about 1 week after lots of hard work he got to go home . His bladder was the problem he could not control it so he had quite a few accidents but after time he was totally healed. One year and 10 months he has just a few accidents if he drinks alot of liquid before bed but he skatebords and plays like a normal kid he was told he could never play football again no contact sports but as long as he walking we are so happy all of our prayers go out to all of the people experiencing this tragic problem.
    Last edited by tinaassi; 05-15-2008 at 09:50 PM.

  10. #20

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