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Thread: New SCI - Surfers Myelopathy

  1. #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.

  2. #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)

  3. #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.

  4. #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

  5. #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!

  6. #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?

  7. #27
    Quote 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; 01-07-2010 at 02:10 AM.

  8. #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

  9. #29

  10. #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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