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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; 27 Jul 2006, 1:49 AM.

    #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; 27 Jul 2006, 8:35 AM.
    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


      #3
      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!

      Comment


        #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

        Comment


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

          Comment


            #6
            Re:Surfers Myelopathy

            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.

            Comment


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

              http:///index.php?page=viewarticle&a...nalLevels.html

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

              (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


                #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!

                Comment


                  #9
                  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!

                  Comment


                    #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; 21 Jul 2007, 1:37 AM.

                    Comment


                      #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)
                      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


                        #12
                        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.

                        Comment


                          #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

                          Comment


                            #14
                            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

                            Comment


                              #15
                              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; 1 Sep 2007, 11:14 PM.

                              Comment

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