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Thread: What options for L-1 Injury 2 years post

  1. #1

    Cool What options for L-1 Injury 2 years post

    I was wondering as of 2009 what is available to the public and where I can get anything to help return of sensation and control of bowel and bladder and function of my muscles. I have saddle numbness that hasn't changed at all for some reason. No return of sensation. I can walk. But my weener is numb and I poop in places like the super market and the car... or really anywhere My butt feels like firing one out. But really.... where do I start to look for Nogo blockers and people who do all that crazy surgery stuff for chronic SCI. What number do I call or website do I look at or who does this stuff.... I hear all the things that are happening.... but its so confusing for me to know what is right for my injury or what will work and what won't. I could even dress up in a fuzzy grey suite and put ears on my head so they think I'm a rat.... if they could fix my stuff. Anyway can you guide me to the drugs and or surgery please.

  2. #2
    Senior Member Leo's Avatar
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    hi gmaaan,

    was your cord decompressed?

    like i just said in another post many places will treat you, know one can promise the return your expecting.

    we have research getting close and 09 will be exciting.

    we need advocates and fundraisers to get us there,

    join up with United 2 Fight Paralysis and StepNow

    http://www.thepetitionsite.com/2/sig...-cord-research
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  3. #3
    Quote Originally Posted by gmaaan View Post
    I was wondering as of 2009 what is available to the public and where I can get anything to help return of sensation and control of bowel and bladder and function of my muscles. I have saddle numbness that hasn't changed at all for some reason. No return of sensation. I can walk. But my weener is numb and I poop in places like the super market and the car... or really anywhere My butt feels like firing one out. But really.... where do I start to look for Nogo blockers and people who do all that crazy surgery stuff for chronic SCI. What number do I call or website do I look at or who does this stuff.... I hear all the things that are happening.... but its so confusing for me to know what is right for my injury or what will work and what won't. I could even dress up in a fuzzy grey suite and put ears on my head so they think I'm a rat.... if they could fix my stuff. Anyway can you guide me to the drugs and or surgery please.
    gmaaan,

    From your description, you have a conus injury. This is injury to the tip of the spinal cord. The sacral spinal segments that control bladder function (S2), sensation around the groin (S3), anal sensation and sphincter (S4/5) are located in the conus.

    A conus injury usually causes a "saddle" distribution of sensory loss (all the skin surfaces that would touch a saddle), flaccid (loose with no tone) anal sphincter, and loss of bladder function. The neurons that control these functions are very likely to have been damaged.

    Therapies that are currently in clinical trial may not be applicable to you because they are aimed at regenerating spinal tracts that connect the brain to the lower spinal cord. They are for spinal cord injuries that are higher, from the neck to the lower back.

    Let me discuss the therapeutic approaches.
    1. Neuronal Replacement Therapy. Treatments such as Cethrin, Nogo-A antibody, olfactory ensheathing glia, and other therapies aimed at regenerating long spinal tracts are not likely to restore function to a conus injury alone. Those treatments should be combined with neural stem cells that can replace neurons. I want to point out that no clinical trials have yet started with these types of therapies:
      • Transplant neural stem cells that can replace the neurons that have been lost. At the present, there are only three sources of neural stem cells. One is form aborted fetuses. The second is from adult brain (subventricular zone or hippocampus). The third is form embryonic stem cells (or induced pluripotent stem cells).
      • Regenerative therapies. (Cethrin, Nogo-A antibodies, lithium, rollipram and cAMP, etc.) should be given alongside the neural stem cell transplants so that they would stimulate the transplanted cells to grow and reconnect to muscle, and spinal axons to connect with the transplanted cells.
      • Stimulation of endogenous neural stem cells. The spinal cord itself has some neural stem cells. Several therapies have been reported to stimulate these neural stem cells, including lithium.

    2. Peripheral nerve bridging. Dr. Xiao in Tongji University in Wuhan and Shanghai has restored bladder function (and perhaps the anal sphincter) by transferring the ventral spinal root of L2 to the pudendal nerve (S2/3) innervating the bladder, sexual organ, and bowels. One ends up sacrificing some muscle function but it may restore bowel and bladder. Sexual function is uncertain.
    3. Artificial Anal Sphincter. Depending on how much tone your sphincter has, you may want to consider an artificial anal sphincter. A cuff is placed around the upper anal canal and connected to a control pump in the scrotum. When you need to go, you press the control a couple of times to release the cuff. It slowly fills back up again. There are other approaches, including sacral stimulation, biofeedback therapy, etc. but I am not so experienced in these and will have to do some research to talk about them more.


    Wise.

  4. #4
    Thanks Dr. Wise,
    It sounds weird talking about this stuff... but I do not have a flaccid sphincter... I just can't feel or control it myself. I can feel my balls but not my johnny. I can ejaculate but no orgasm. I can pee... but only when it feels like it same as number 2. So it sounds like the only thing for now would be lithium? Cuz I'm probably not going to China... and the other therapy or drugs won't work alone right? Thanks for such a quick response. I was hoping there would be something ... anything out there today.. everybody said I had to wait two years to see what I got back... so now I'm just wondering what is next for this recovery. Thanks again Dr. Wise, G
    When the "Power of Love" is greater than the "love of power" we will have peace. ~ Jimmy Hendix

  5. #5
    Quote Originally Posted by gmaaan View Post
    Thanks Dr. Wise,
    It sounds weird talking about this stuff... but I do not have a flaccid sphincter... I just can't feel or control it myself. I can feel my balls but not my johnny. I can ejaculate but no orgasm. I can pee... but only when it feels like it same as number 2. So it sounds like the only thing for now would be lithium? Cuz I'm probably not going to China... and the other therapy or drugs won't work alone right? Thanks for such a quick response. I was hoping there would be something ... anything out there today.. everybody said I had to wait two years to see what I got back... so now I'm just wondering what is next for this recovery. Thanks again Dr. Wise, G
    Gmaaan, what you describe is good news. It suggests strongly that you have a lower injury that has damaged your cauda equina (these are the spinal roots that come out of the lower spinal cord) rather than your conus. So, you have selectively damaged several of the spinal roots.

    I do agree with "everybody" who has recommended that you wait to see what recovers. The fact that you have some sacral functions but not others is good. For cauda equina injuries, by the way, the main problem is sensory loss because the axons that have been damaged in the root cannot grow back into the spinal cord. This explains the fact that your sphincter is functioning but you cannot feel.

    Lithium may be something for you to try. However, I really don't know what it would do. We have been testing in people, looking carefully for the possibility that it may induce neuropathic pain or change spasticity. So far, it doesn't seem to have had that effect at all. So, from that perspective, I think that it is good. Please remember that lithium is quite toxic when taken in too high a dose. It must be given a doctor who is experienced with lithium and can monitor blood levels.

    Wise.

  6. #6
    Thank you again for your time and great responses. G
    When the "Power of Love" is greater than the "love of power" we will have peace. ~ Jimmy Hendix

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