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Thread: SCI June 3, 2011

  1. #1

    SCI June 3, 2011

    Hey all,

    I shattered my C5 vert and suffered a contusion to my cord. This resulted in a functional c7 and incomplete prognosis. I've been recovering for a little over 9 months and really am not where i want to be. I'm worried time passing by is not good for getting back to walking, since I still can't wiggle my toe consistently. Also I've starred to experience a burning icey hot sensation from my hips to toes. I'mdetermined to get back up and have been doing therapy at home and at NYU rusk.


    Any thoughts,


    John

  2. #2
    Welcome to our forums. What is your official ASIA type? Do you have sensation right at your anus? Are you still seeing improvement.

    It is common to continue to improve some for 2 years or more, although the most rapid and dramatic improvement is usually in the first 6 months. Regardless, keep in mind that many people have gotten return long after this...Christopher Reeve, for example, got some finger movement 10 years post injury.

    Are you getting treatment for your neuropathic pain? Is it interfering with your activities and function?

    Are you standing daily? Doing any FES? Supported ambulation training? Pool therapy?

    (KLD)

  3. #3
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    Dear Johnny,

    What was told to me was that you have about 6 months to discover what you have post injury, 6 months to develop those items that you can recover then 6 months to culminate those items in your recovery. They also told me that it was 6+6+6= first year post injury. It was kind of like Enron Math.

    For my self I was injured August 2004 told I had a burst T-4 vert. and no chance to ever walk again. I spent 3 months in Hospital as well as inpatient Therapy. Like KLD said there is a test for involuntary reflex where they stick a finger in your rectum and tug on your penis. If you respond you might be "incomplete" which is a VERY GOOD THING. That was the ONLY involuntary response I had 3 months post injury. If you have some toe movement my best guess is that you are an incomplete and there might be just one axon left, so work the living day lights out of that little connection.

    As I was discharged from Inpatient to Out Patient I could feel the swelling on my spine starting to decrease while the pain level went through the ROOF. I also participated in a Locomotor Research project. I started the program wheeling myself up to the gantry and wiggling myself into the safety gear. Before the end of the research I had at least one more surgery to remove a bone chip from my spinal canal and to have Harrington rods placed to fix a kyphosis. As the research for the Locomotor training was winding down I was using a walker to wobble walk my way up to the locomate machine and I was putting the safety gear on myself in the researchers office chair. Some collateral return that I have achieved as a result from regaining some leg strength is some bowel and bladder control. It is no where close to what I had pre-injury but SOMETHING IS BETTER THAN NOTHING.

    You must be in it to WIN back what you have lost. Some of the other research participants in my peer group got NOTHING. For some research participants the most they got was a free lunch voucher. I was doing Outpatient therapy and pool therapy while doing the research project. I have bought a used three wheel recumbent and have done as much as 42 miles in one day (had really bad Autonomic Dysreflexia before I got home so don't try it with out 911 on speed dial). Some of my family and friends have made mention that if they were ever to have a SCI they would want to have the kind of recovery that I have had. It is not easy and as compared to an 80 hour work week the over time was a CAKE WALK compared to the amount I have put out in my recovery post injury. You do not receive any compensation and you will never get back to "Normal" but normal is just a setting on the washing machine. There will be some days better than others and there will be some days you will just want to give up and cry. You need to decide what you want for you and do for YOU. No one else can do your own recovery and you need to be happy with what ever you get back. Some people have been injured for YEARS and one day it just starts clicking when any day before it just never did. Try to find a high intensive therapy regiment like Next Step {http://www.nextstepfitness.org/} or Project Walk {http://www.projectwalk.org/} or SCI STEP . These type of therapists will coach you but you will need to push your self in your own recovery. Never underestimate the VALUE of buoyancy and Pool Therapy. Other quads like Pat Rummerfield started with a Walmart bike type piece of equipment. Last time I checked Pat was doing crazy marathon type races while his body was falling apart due to the secondary affects of SCI. Very few of those who get a smell of recovery ever back down from the addiction of MORE MORE MORE.

    Welcome to the blog, now make the best out of what you want to accomplish, what you can do...... for you.

  4. #4
    Like KLD said there is a test for involuntary reflex where they stick a finger in your rectum and tug on your penis. If you respond you might be "incomplete" which is a VERY GOOD THING.
    I think you may have misunderstood this. This describes the bulbocavernosus (BC) reflex. Having one does NOT indicate that your injury is incomplete. It only indicates 1) that you are out of or coming out of spinal shock, and 2) that you have an intact reflex arc at S2-4. It is a good predictor for having reflex erections, and for having a reflex (i.e., lower motor neuron) bowel and bladder. It is not related at all to having an incomplete injury or not.

    (KLD)

  5. #5
    It's great to hear back from the two of you as I hadn't realized anyone responded to my post since I'm new to the site.

    I believe I am an Asia B. I have sensory through out my body since my injury. That burning sensation doesn't interfere with my daily activities but is at its worse when I try to sleep with a blanket on. My friend helps me train at home as well as a private pt, both say they see improvement. Massage therapist I see 2-3 times a week. I have a stander at home and in it daily for 1-2 hrs. Also I just started NueroMove for my hands last week. No pool therapy.


    I. Do notice my hand eye coordination is improving daily as well as my range of motion in my arms and shoulders, my tenodisis is getting better but I want my fingers back too.


    A bigger issue now is the heterotopic ossification I have in my right hip, back on meds for it to hopefully stop the growth. It's around the ilium and growing, maybe in the left too.


    I have checked out NextStep and project walk and my family have been talking with Kessler too to see if I can get in their locomotor program.


    Also with bowels I use condom caths and sweats when leading up to and during urination. Also I know when I have to move my bowels but not tHat far ahead of time. Leg spasms at night are still there as well as new lower back stiffness and a good amount of tone throughout my body.


    Hope I didn't lay a lot of info out in rambles, just excited to hear back.


    I have been and will continue to be dedicated to get back to walking.


    10 months post injury,


    John

  6. #6
    Sounds like you are doing great!

    Moving and stretching are so important and you appear to have that covered. You mentioned no pool therapy. My son is a paraplegic and he really benefited from that because he was able to move in the pool in a way he simply couldn't otherwise. It took awhile for him to learn how to work with his body in the water (ex. his legs floated at first and he had to wear ankle weights). Once he got the hang of it, pool therapy was amazing.

    Best wishes.
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

  7. #7
    Thanks for responding Lucy, good to hear from you and I hope your son is doing well with his recovery. My mother found a place for aqua therapy, might try it over the summer. I'll try it all as therapy keeps me busy.

  8. #8
    Anyone deal with or know about heterotopic ossification?

  9. #9

  10. #10
    Well I have it in my right hip, took dindronel to stop the growth in the hospital. It worked initially but it started growing again so back on dindronel. It's pretty noticeable when I sit and prevents good sitting balance. My doc said no surgery because it could grow right back, a messy surgery too. What do you think

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