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Thread: Transverse Myelitis and Nerve transfers

  1. #1

    Transverse Myelitis and Nerve transfers

    Hi. I was wondering if anyone has any knowledge of nerve transfers working to re establish bowel and bladder? My daughter was diagnosed with TM nearly 3 years ago at the age of 12. She has made an ok recovery with walking, but has had 0 return with the b/b. I was reading today about creating new nerve connections. Can anyone give me insight? Thanks!

  2. #2
    Senior Member lynnifer's Avatar
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    I have TM too .. diagnosed at 12 but I was the 1/3rd that were left permanently paralyzed. 27yrs ago at age 12. Gawd I'm old. lol

    Congrats that your daughter recovered as much as you say!

    Unfortunately ... science is just not there yet. Dr Jerry Silver would be one to watch .

    Has she tried Ampyra? Someone here mentioned that Johns Hopkins in Baltimore were going to have trials with it this fall/winter ... (also known as Dalfimipridine, 4-ap, famipridine, etc). It forces a signal over a damaged nerve (and as we know, myelin is targeted in Transverse Myelitis).

    It's worth a shot ... but I've never seen it prescribed for children or teens.

    myelitis.org

    P.S. She's fifteen with a neurogenic bladder and bowel ... if she has any sexual questions on dealing with that, I'm here to help. I learned it all the hard way .. err I mean there was no one to guide me. That's better, lol.
    Last edited by lynnifer; 11-28-2012 at 09:10 PM.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3
    I had TM when I was 11 and one of those with partial return.

    Sorry, have not heard about any nerve transfers in this situation.
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  4. #4

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    Thank you guys! She has tried the 4AP, but she is not taking it anymore. Her endurance was a little better while on it, but over the summer she had a hard time staying on a schedule.

    She falls into the 1/3 making partial recovery. She was paralzyed right in front of my eyes...within minutes. Very scary for all of us. She was also 12. She has function in her left leg and partial in her right uses an afo for her right foot. She has not regained sensation, but we still have hope that it can and will come.

    I am also a memeber of the TMA. I love the organization! They have helped so much and we attended the symposium in 2010 and both family camps the last 2 summers.

    The reason I had my question is I know the nerve transfers exist with other nerves...arms and legs. I had run across an article talking about doing the transfer for return of b/b. This seems to be her biggest issue.

    Thank you for your offer lynnifer. I will let her know. I am sure at sometime those questions will arise. Honestly, I don't think I can handle that...

  5. #5
    Super Moderator Sue Pendleton's Avatar
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    Lynnifer is an excellent source for information for those injured early in life by TM.

    And do send your daughter to the teen weeks/weekends the TMA offers. I understand that many make friendships there that last a lifetime.

    I loved the TM Symposiums when they and we were in Baltimore. My injury is from a spinal infarct so TM often is the closest to it.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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