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    #16
    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...

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      #17
      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

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        #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.

        Comment


          #19
          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; 15 May 2008, 9:50 PM.

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            #20
            Article about my son Joe

            http://starbulletin.com/2008/06/16/news/story02.html

            and the other guy
            http://starbulletin.com/2008/06/16/news/story01.html

            Comment


              #21
              I just stumbled on to this thread and am really worried now. I read something about Surfers Myelopathy a while back but forgot about it. I'm running a surfing blog which has been pretty light until now, so I was going to cover some of the health issues about surfing.

              I always thought surfing was good for your health, but the SM sounds horrible. Are there any precautions you can take or is it just an unavoidable risk with surfing?

              Are there any other major spinal issues with surfing?

              I hope you guys recover as quickly as possible. The surfing culture is so carefree that I would never have heard the truth about this unless I found this site.

              Comment


                #22
                So far we have no idea why some get this but it is nearly always neophyte surfers who do. Most people will not have full recovery and many not have any return after their initial paralysis, but can still lead an active life. Many with paralysis still surf too.

                I don't think it is a reason to not surf. The risks of getting this are much less than a shark attack, and you must know that that is also quite rare.

                (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.

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                  #23
                  more info on Surfer's myelopathy

                  We have first hand experience with “Surfer’s Myelopathy”. While visiting Waikiki on May 20, 2008, our sons, Zach (22) and Nic (20) took surfing lessons with a reputable surfing school. After about 20 minutes in the water, Zach experienced pack pain and made his way (alone) back to shore, where he lay until the lesson was over. He was unable to stand on his own and was taken to Straub by ambulance.
                  The diagnosis was “Surfer’s Myelopathy”. He had all of the classic symptoms: first time surfer, age 20-25, lower back pain, weakness progressed to paralysis in his lower body, and urinary retention. The doctors said that they suspected that the blood supply had been cut off, or restricted, to the nerves in the lower spine causing nerve damage (a spinal stroke), which results in paralysis. We were told that previous recoveries had varied from near full recovery, to partial paralysis, to paraplegic.
                  Zach was one of the lucky ones (praise the Lord!!!). After a day in ICU, a few more days in the hospital, a week in the Rehab hospital (re-learning to walk), and two months of outpatient physical therapy (building up strength and endurance and improving coordination), Zach has had a near full recovery. Besides all of the prayers, I attribute much of his recovery to his awareness that something was wrong, which made him quit surfing and come to shore, and also to the rapid medical attention that he received.
                  After his diagnosis, we were amazed to learn that no one at the surfing school had ever heard of such (or so they said).
                  I recently wrote an email to the surfing school that we had used. I asked them to read an article about Surfer’s Myelopathy (http://starbulletin.com/2005/03/27/news/story2.html) and insure that all of their instructors are informed and familiar with this potentially devastating injury. Even though this rarely occurs, it is VERY IMPORTANT that they INFORM THEIR STUDENTS to be aware of the symptoms, should they occur.
                  It is not enough to have students sign a waver releasing the surfing school from responsibility in case of injury. They should make everyone aware of the symptoms, so they will recognize a problem and seek immediate medical treatment, which is vital to maximize recovery. Even though surfing schools may not be held legally responsible, surely they would not want a devastating, life-altering injury to occur, by not sharing specific information that could have prevented or minimized it. All instructors should verbalize this information to their students, during the dry-land training, and have students notify an instructor, if they experience any of the symptoms, during or after the lesson.
                  It is so important that this information be spread to as many people as possible in the surfing community. If it can save one person from a life of paralysis, it is worth it.
                  The surfing school, that I wrote to, replied that they are now including the information in their lessons.

                  If you happened to be watching ABC on 8/12/08, there was a show called "Medical Mysteries" which featured a report on "Surfer's Myelopathy". The doctor, that they interviewed, Dr. Nakamoto, was one of the doctors that treated Zach. You can see a portion of the video at the link below. There is even more information, if you read the whole article.

                  http://abcnews.go.com/Health/Story?id=5556152&page=1

                  The story is nearly the exact same thing that happened to Zach, but Zach's outcome was much better. Zach is doing well and by all appearances has had a near full recovery. Praise the Lord!!!! He is not yet at 100%, but is still optimistic that more healing can occur.
                  Coincidently, three days after Zach was injured, another young man experienced the same injury. His name is Peter and he is 19. He has not been as fortunate as Zach and, after 3 months is showing some progress, but is still unable to walk.


                  BOTH OF THESE YOUNG MEN, AND MANY OTHERS, NEED OUR PRAYERS.


                  You can find more information about “Surfer’s Myelopathy” on “GOOGLE’ or check out some of the sights below:
                  http://starbulletin.com/2008/06/16/news/story01.html
                  http://www.to-hawaii.com/blog/2008/06/19/surfers-paralysis-myelopathy-beginning-surfers-beware/
                  http://www.khon2.com/home/ticker/21898979.html (June 26, 2008)

                  I would be interested in hearing progress/status of some of the people who previously left entries about Surfer’s Myelopathy. Hopefully some have seen progress and others would be encouraged to hear about it.
                  My thoughts and prayers are with you all.

                  Comment


                    #24
                    I have assisted several families whose son's had surfer's myelopathy this summer. The outcomes were all varied depending on when the individual left the water after the pain started.

                    I think education is the key and if symptoms show, get out of the water. Surfing schools are a great place to start.
                    Every day I wake up is a good one

                    Comment


                      #25
                      Hi Everyone-

                      My name is Joe Guintu and I was one of the individuals featured on ABC Primetime Medical Mysteries special. I want to first thank everyone for their kind words, thoughts and prayers. This has been such a trying time for me, my friends and my family. One day, everything is normal, and the next, for not doing ANYTHING wrong, is completely different. I think back to the days about a year and a half ago where I could walk, thinking nothing of it. Now, I strive towards it every day.

                      I have returned to work, working full-time. I am still going to therapy twice a week at Next Step Fitness in Lawndale. Between work and therapy, I am EXHAUSTED! But, I must keep on fighting. I will not give up. I can't wait until the day where I have all of my time back...no more time on therapy, no more time on transferring in and out of my car, no more time wasted on extraneous medical routines that I must perform daily.

                      My fiancée, Ivette, who was also in the ABC show, has been working very hard with some colleagues to establish a non-profit, Surfer's Myelopathy Foundation (SMF). Between the non-profit hoops and general coordination, it has been a long process getting it started, but hopefully will be up and running soon. The main goals of this are to promote awareness of this injury and educate the surf schools/instructors.

                      I have seen a reply above that this is a very rare injury. It is very rare. I had a better chance of getting bit by a shark. However, for those that it affects, it doesn't matter how rare it is, it is 100% affecting us!

                      Also, I am ECSTATIC to see Zachsmom's response above. Since the very day I was injured, it was my goal and hope to find out as much about this injury as I can and to anyway, anyhow help those who may be affected in the future. Her statement above is a testament of how, someway, the word of Surfer's Myelopathy got to her and her son, and her son got out of the water right away and is almost fully recovered. I am so glad that at least this one life was positively affected by the awareness so far.

                      Please continue to keep myself and all those affected with this bizarre injury in your prayers as I have spoken with a number of people with SM, and we are all FIGHTING to walk again. I have already made a pact with some friends that I will run that marathon that I dreamt about running before I was hurt! I can't wait to post pictures of that glorious day!

                      Comment


                        #26
                        Recurrance of symptoms?

                        I had surfer's mylopathy in 2003 at the age of 16. I guess I was one of the lucky ones because I was nearly recovered except for a slight foot drop after 1 month of inpatient treatment and 2 months of outpatient physical therapy. However, earlier this year I began having problems with pain and tingling in my right leg. The doctors thought I might have Multiple sclerosis but ruled it out and my pain went away with high doses of steroids so they didn't do anything else. This was in January. Then last week the same pain and tingliness returned primarily in my right leg but also somewhat in my left leg. I was wondering if there is any history of patients with surfer's mylopathy having recurring problems years after the original event?

                        Comment


                          #27
                          Originally posted by Don Armario View Post
                          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.
                          Don,I have filed suit in Hawaii against a surf school for a 16 year old boy who had his first surf lesson on Maui in 2007 and developed surfer's myelopathy. I anticipate the school will claim it's instructors never heard of SM. I would appreciate hearing where Paul had his surf lesson, the name of the school, and whether the school became aware of his condition, and when. Regards, Buck Ashford

                          Last edited by SCI-Nurse; 7 Jan 2010, 2:10 AM.

                          Comment


                            #28
                            Surfer's Myopathy is well documented and written about. I would venture most if not all of the surf schools are aware of it in the Islands. I know that I receive several calls per year from families who are dealing with this. Thus far, all cases have occured in Hawaii.
                            Do a search as I believe that the Hawaiin newspapers have written about it often.
                            Every day I wake up is a good one

                            Comment


                              #29
                              Here's what the NIH has to say:

                              http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2031959/

                              Comment


                                #30
                                Buck, can you tell me if you are an attorney, investigator or family member?
                                Thank you in advance. I got your email and will try to reply soon.
                                Every day I wake up is a good one

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