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Thread: 15 year son had non traumatic spinal cord injury

  1. #1

    15 year son had non traumatic spinal cord injury

    My 15 year old son was diagnosed with TM in Sept 06. Seen at Hopkins and now thought to have experienced an 'almost' spinal infarction called a fibrocartilaginous embolism at T5/T6.
    He woke up with terrible pain in his back and was paralyzed from the chest down with in three hours . Was treated with IVIG and decadron then with IV solumedrol for three days. spent three weeks in the hospital, then five weeks in inpatient rehab hospital. Continues three days aweek outpatient physical therapy. At six months he can walk independent, bowel ok with urgency , bladder improving slowly- still caths 2x/day, no pain or temp feeling from chest down.
    Recovery is similar to TM and some other SCI. Dr at JH said that it is often misdiagnosed as TM. Have been searching for other people who have had an episode similar to Brian's who can relate, talk, share story and or advice. Anyone?
    Thank you for reading this post and for all the posts that I have read that generously share your experiences. I'll keep all of you in my prayers. Nancy

  2. #2
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    Cool Hello

    Hi Nancy,
    My name is shana and I had the same experance... I woke up to get my son ready for school and alittle bit later I had the worse pain ever in my back.. It felt like someone was trying to snap my spine.. with in 3hrs after that, I was paralized from the chest down.. It's been 7 months now and I'm trying to get the IVIG treatment. Please feel free to write me back. If you have alot of questions I'll give you my number it easier that way.. I'll pray for you both and tell your son that things will get better we have to belive that..
    It is not how we fall that defines us..
    It is how we rise.

  3. #3
    Shana your story sounds very similar to my son's. I copied/pasted a post from anothr TM site that I had posted. It is his story in short. He also describes the pain he had in his back as the worst pain he has ever experienced. The John hopkins website for transverse myelitis is very helpful. I wrote to you on your other post. I'll check up tommorrow Nancy
    Joined: 27 Feb 2007
    Posts: 4

    Posted: Tue Mar 06, 2007 7:46 pm Post subject: my Brian New to this site but am learning alot from reading about others.
    On September 2006 My 15 year old healthy son was awakened by severe pain in his back that quickly went to his head. Went to ER . He was paralyzed from chest down (T5/T6) within three hours. No trauma, no medical history. Treated for GB with IVIG along with decadron and then treated for TM with Iv Solumedrol. After three weeks in hospital, left with diagnosis of ideopathic TM. transfered to rehab hospital. In patient treatment for five weeks. Left hosp walking with a cane. Bowel are OK but he has urgency. Bladder is slowly improving still self caths 2x/day. It has now been 6 months. He can feel pressure but not pain, wet or temperture from waist down. As I'm sure you all know too well from you own experience,we were shattered. Emotionally as parents we are wrecks. Bri is strong and continues to work hard in outpatient PT.
    He continues to improve slowly but steady.
    A Question... We went to John Hopkins, based on Brian's third MRI(special with thin slices),the sudden paralysis(<3hrs) and Brian's relatively quick (moving toe at two days) we were told that Brain most likely experienced something called ..get ready...a fibrocartilgenous embolism in his spine.The Doctor said that it is commonly misdiagnosed as TM. He said very rare but is seen at JH more commonly because of it being diagnosed as TM. He said most people don't have the exact MRI to distinguish it fromTM but Brian 's nuerologist happened to order that MRI at the "right" time so he is comfortable in saying that that 's what it was. Has any one had this? heard of anyone with this? Or had episode similar to Bri's?
    Sorry so long.. It's only now six months later I am able to communicate about it without crying. I guess it all just came out. Thanks for reading my long post. Nancy

  4. #4
    Fibrocartilaginous embolism of the cord is a very rare condition that occurs primarily in very physically active, athletic males. It is a vascular injury, not an inflammatory injury like TM. It is common for people with vascular SCI to make significant gains in recovery for two years or more, so it is too early to say how much he will get back ultimately.

    It is relatively common in dogs apparently. Lots of citations for this in Google. It can also cause brain strokes. Here is some further information:

    http://stroke.ahajournals.org/cgi/co...tract/24/5/738

    http://stroke.ahajournals.org/cgi/co...tract/14/3/413

    http://cat.inist.fr/?aModele=afficheN&cpsidt=15455171

    http://www.nature.com/modpathol/jour.../3800037a.html

    http://www.ajnr.org/cgi/content/full/26/3/496

    http://jnnp.bmj.com/cgi/content/full/64/3/358

    (KLD)

  5. #5
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    Nancy I check my e-mail through out the day. feel free to e-mail me you'll get a quicker response if you e-mail me at shana_lowther@yahoo.com
    It is not how we fall that defines us..
    It is how we rise.

  6. #6
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    Nancy can you go to flashchat
    It is not how we fall that defines us..
    It is how we rise.

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    nancy i have to go but feel free to e-mail me.I'm not in here alot but I'll check in and see if I can catch you here bye I'll be praying for you and your son
    It is not how we fall that defines us..
    It is how we rise.

  8. #8
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    Quote Originally Posted by Shana
    Nancy I check my e-mail through out the day. feel free to e-mail me you'll get a quicker response if you e-mail me at xyz
    Shana, you might not want to post your email address here on a public board. Spammers often collect them this way. You could use the PM option to give your address to Nancy, or assuming that she now has it, you might want to edit your post. (Something I only learned recently)
    T7-8 since Feb 2005

  9. #9
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    I had a FCE almost 12 months ago to the day! Similar circumstances, Shana I have sent you a PM.

    The doctors have said I have a T7 incomplete SCI.

    This is a great thread!
    Thanks to the SCI-Nurse for the links and the information. Only one doctor in Sydney, that saw me, really knows much about FCE and I was still in shock when he spoke to me. I'm in Canberra, Australia.

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