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  1. #1

    Talking New Spinal Cord Injury

    Hey guys, I was surprised to see that there are forums out there like this and I'm very grateful for all of your help.

    I suffered an L1 Burst fracture on August 2nd of this year when my friend fell asleep at the wheel and the vehicle did a couple flips. I had a corpectomy to remove bits of my bone and fuse parts of my spine. They then went in a second time through the anterior and did more fusion and removed more pieces of the shattered bone.

    Now three and a half months later, I'm able to clear about 200ft in a walker with KAFO's and I have a bit of strength in my right quad (about a 3 minus). They said I am an incomplete T11 Asia C; however, recently I had an MRI and found that the tip of my spinal cord at L1 was severed (i'm a lower motor neuron with much of my lower body being flaccid/ no spasms). This is strange because this would most likely mean that I would have no sensation below the S1 area (which I do). I can tell when i'm about to urinate although uncontrollable and feel digital stimulation for bowel movements (I can push a little too). There's no sexual function although I've tried experimenting and i can feel a sensation close to an orgasm although far from it (kind of close to the sensation when i'm about to urinate but, more extreme).

    This is what I am experiencing through my recovery thus far:
    I have trace in my right hip reflexors, strength in my right quad and hamstrings, sensation from the front of both legs all the way down to the soles of my feet with little sensation on a portion of the big toe. I have sensation on only my right testicle and right pubic area (as you can tell by now, my left side isn't very cooperative). I can tell when i'm about to urinate, feel dig stims and feel pressure on my tail bone & butt bones. That's pretty much all I've got right now. I'm still in my TLSO and it seems im making some progress.

    I was wondering if anyone could give me a bit of insight in terms of why i have those sensations below my level of injury (especially below the severed part) and if anyone has something similar. My doctor told me that he had never seen an injury quite like mine (it's pretty rare apparently).

    Thank you for your input!

    Also, I heard that Geron had stopped their work in the spinal cord industry (although finishing the clinical trial with what patients they kept). Let's all hope that one of their partners pick up from where they left and keep our hopes up for one day...a cure!


    -david

  2. #2
    Because things can change! There nervous system, and especially the spine And SCI are very complex. One size doesn 't necessarily fit all!!
    First, there is spinal shock and the bladder always lags behind and you can't go by the alevel of the injury and ASIA as things can change.
    Sof that score is what you were at that time and it can change as you recover. Some it never changes but others it does. Each person and injury and recover is different.
    If you are/were at the time tested an ASIA C that means you have muscles working below the level of the injury. If you are able to walk with out orthotic equipment and move your ankles feet i.e against resistance and strong enough you are an ASIA D but the ASIA score is very complicated at times. Also as you recover from spinal shock especially the bnladder can lag behind it may change. And sensation is different from motor- so you might have a different sensory ASIAS score and as time goes on it may change somewhat. So keep up with the therapy and your see what develops.
    The management is based on your symptoms and not on the Level of injury or the ASIA score, especially the initial ASIA score as things change and varying levels of incompleteness.Things do recover and change slowly.
    did you have urodynamics testing for your bladder recently?
    That is why you should keep seeing the SCI doctor periodically.
    Sokeep up the hard work.
    CWO

  3. #3
    I have lots of feeling below my level of injury also...guess it means we're incomplete!!?
    still feels like pins and needles in my feet, I have cold feet all the time. Have u had any electronic stimulation?
    I had my TLSO on for a little over 3.5 months. Have u fallen at all? Do u have ankle movement? Im about 4.5 months since my injury. I go to pt 3x a week, bladder biofeedback (to try to regain bladder control) once a week, n I also do acupuncture once a week. How long were u in the hospital afterward? How old r u?

  4. #4
    Yes, every injury is different. You obviously still have a lot of nerve connections left even though they may not be showing up on MRI, nearly impossible to see that way anyhow.

    Keep working at things, you are still very newly injured so that cord may still even be in some shock, you could still find you get a lot of return in time.

    Your injury is completely different than what I experienced as my cord was just completely shut down from t4 up high in the back and was a complete injury so nothing ever came back.

    You should probably work out hard on a locomat machine if you can find one in your area at a rehab center or even take a trip to the miami project and see about using theirs if possible. I think in your case intensive rehab could really have big dividends. Stay strong.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  5. #5
    Senior Member JEAPOW's Avatar
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    Welcome David, we have similar injuries. I was injured a year ago in a vehicle driven by my son in law. I also had a corepectomy and had a pulmanary embolism 12 days after surgery, so I had a greenfield filter put in. I was fused at L1-L2 with a titatanium cage, rods and screws. I understand your pain. I also wore a TSLO for 3 1/2 months then went to smaller brace and then by six months no brace. I also went from wheel chair, walker, to now a cane, around the house I walk without the cane.

    As you know every case is different and I am not a young pup so that has alot to do with healing. My B&B issues are much better, I still have bowel issues though. The Doctor thinks I have some Equine injury also. The nerves grow really slow and some times I think mine are on time out!! I can tell you it's hard work, but you have to keep going and listen to your Doctor, but also remember you know what your body is saying. I am now seeing a pain management Dr also. I have neuropathy in my feet pretty badly and some from knees down which it does not sound like you have.

    It is also my left side that does not co-operate. It is still numb from the bottom of my incision. My incision finally looks better the chest tube mark isn't so pretty, but a bathing suit covers it up. Swimming is wonderful therapy for me, I try and swim 3 times a week.

    I wish you the best and will be watching for your posts....Stay strong especially emotional.
    JeAnNE L1Burst Fracture inc. 11/5/10

    Live Well--Laugh often

  6. #6
    Senior Member fromnwmont's Avatar
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    Oct 2011
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    Welcome David: I was recently injured compression fractures T11-T12 and my pelvis in 2 areas I just recently as last week started regaining control of my bladder but still have to be careful when running hot water on my hands WHY that tells my bladder to release i will never know.. I have little feeling in my left leg quad area and my groin muscles now look like jello, I know the type of "orgasm" you speak of (like oh yea here it comes then nothing) but feel fortunate to have what i do and believe it will get better with time.. I think every injury is differn't even thought it might be in the same area... work hard and stay as positive as you can...

  7. #7
    Thank you guys so much for your input.

    @SCI-Nurse
    I do not have urodynamic testing for my bladder as of recently but, I will get on that as soon as I can! Thank you!

    @LIP26
    Thank you for your input! And since we have that extra sensation below our injury, I suppose we are incomplete after all yay! I used to have the pins and needles on both my legs but, with time- it turned into more sensation at that area. I do the RTI bike every once in awhile and it feels pretty cool! I've yet to fall for real but, I've practiced fall recovery numerous times in rehab! My ankle doesn't seem to cooperate and my doctor actually said that I probably wont be getting that back for sure. My injury was on August 2nd so, my four month anniversary is coming up. I went to the TLC at Casa Colina but, I'm now doing the day treatment program 3x's a week for 5 weeks. I'm on my last week. I'm going to look into acupuncture for sure. I was in the Hospital for 16 days and then went to acute rehab for 4 weeks at Santa Clara Valley Medical Center. I'm 20 years old. You?

    @Curt Leatherbee
    Thank you for your words of wisdom! I also would like to believe that I have at least some nerve connections left despite what the MRI says. In terms of the locomat machine, I don't think I'm ready for that just yet! haha I will look into it though! I'm doing intensive PT for five hours 3 times a week. Extremely tiring but, I'm sure it's paying off! Thank you!

    @JEAPOW
    Oh goodness! It does seem that we have very similar injuries! I'm so sorry about your accident. The stuff they put into our backs is quite something isn't it?! I wore the TLSO for four months and JUST yesterday had it cleared to take off! I feel totally unsafe without it but, I'm sure it takes some getting used to. I'm happy to see your recovery is coming along very well! May I ask if you use AFO's or anything of the sort? Also, our injuries are still relatively new so that Caudia Equina injury will heal over time! In terms of the neuropathy pain, I'm actually suffering from it on my left ankle/foot area. It's just the worst isn't it?! I'm taking 300mg of Gabapentin for it; however, I heard Lyrica is a much safer drug for it (it's the parent drug or something to that effect). My left side below the incision is just HORRIBLE haha I found out that I have a 2- for my hip reflexors though! Great start! I still have bladder issues so they wont let me into the pool yet but, I'm looking forward to it! My chest tube mark is pretty much gone thank goodness but, the scars do look pretty cool I must say! I really appreciate your reply and wish the best for our recovery!

    @fromnwmont
    Thank you for your input! I'm excited for your bladder regains and the whole hot water thing... that sucks HAHA! Kidding! I know what you're talking about when you say that it looks like jello. It's such a sad sight especially since I used to have thunder thighs. I'm glad we can relate buddy. Thanks for your input!


    Thank you everyone for your thoughts! Its a shame that we have to meet like this but, I hope for the best in terms of our recovery! Also, I don't know if you guys are keeping up with the whole stem cells charade but, I don't think the whole Geron backing out will make as big of an impact on the science as much as I thought it would. I still have high hopes for our man Hans Keirstead and hope that soon, there will be a cure for chronic injuries like ours.

  8. #8
    David --
    I'm looking to get more sensation, which is possible - being so early in the game of recovery. I seem to have more sensation cause its not as much pins and needles anymore. Still I have no strength in either foot because i'm currently unable to push down or pull up very far with both. **Watch how you talk/what you say to yourself and others about your injury, i dunno if you have ever read/believe in the secret but your attitude has a lot to do with recovery. Right now I'm preaching to the choir cause i need to practice what i preach -- I just don't think everyone else knows how hard it is for me right now especially.
    Whats an RTI bike?
    I have just a stationary bike, I put my ankle weights and ride that about an hour/day.
    How is fall recovery??
    How long/many hours are you in rehab daily??
    I'm 27, recently my bday was Nov 26 :0)

    Lisa
    Life is what happens to you while you're busy making other plans. -- John Lennon

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