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Thread: OK Is there anyone that could advise me on AFO information, if you can and would...

  1. #1
    Senior Member marycsm77's Avatar
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    OK Is there anyone that could advise me on AFO information, if you can and would...

    hi,

    I was wondering if Dr. Young and/or medical personal could answer my question and any other comments if any would be appreciated.

    I am 48 yr. old female with Cervical Spondylotic Myelopathy. I had fusion surgery 12/09 C5/6 7/8, Osteopytes compressing spinal cord removed at C3/4. My gait has been altered since 12/08 about 6 months after the pain down my neck, shoulders into hands began. I began to have very heavy legs, wide based stiff gait at times barely able to walk at all. Although my gait was never normal again it waxed and waned thoughout the time it started up until my surgery and still continue to have difficulty walking.

    I had a MVA when i was 20 and had head trauma and my neck cracked the steering wheel from direct trauma. i had no idea about disc problems or ddd back then. I was hosptilized for 4 days concussion etc. but all these years later I had this rapidly progressing myelopathy.

    I still walk with wide based gait, my legs are still stiff, although better I still cannot walk long distances (use a cane for this) or walk up stairs without a struggle, run participate in sports etc. As i say although my gait is better I am 8 months post op and it just doesnt feel as though I am going to regain all the function in my legs. Most important I cant produce any "power" if i force myself to try and run etc. my legs are like rubber. I have been told by my neurosurgeon, physiatrist, pain management and PT that It may never return and of course no one can give me any other answer. I was told by my surgeon and physiatrist that people with Myelopathy are usually always left with permanent deficits. I am still in PT 8 months post op and PT many months before surgery. I am not even discussing the pain i still have down my are and hand and numbess intermittently. Although better I have accepted I will always have some pain I guess.

    So my question is: Is there anything that can be done for a person like me who had injury to their spinal cord but is not paralyzed? I am grateful I can walk but my life is a shadow of what is was. I dont work, am on disability and workers compensation. I was always physically active and in good shape, and I just feel like im being told that basically my gait has a crap shoots chance of returning to normal function. I would like to think that this is not all there is for me. Is there anything else that can be done for me? Any help for my spinal cord?

    thankyou for your help.

    sincerely,
    m.

  2. #2
    Senior Member marycsm77's Avatar
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    what to do to get an answer or feedback to a question???

    hi,
    i posted a question some weeks ago titled CSM at 48 permanent cord damage? Ive tried to get an answer, wrote to the md on the site, but still no input or answer. Is there no place for people with myelopathy here, i dont know.

  3. #3
    I will ask Dr. Young to respond, but if your cord has been decompressed sufficiently, and you are not getting more return, it may be that the disability you have now is what you will have.

    Have you had any return since your surgery or have your deficits remained stable? I am sure you know that stenosis decompression surgery may not always help any existing myelopathy, and often makes it worse. I have a number of clients who are completely paralyzed following this surgery.

    (KLD)

  4. #4
    Senior Member marycsm77's Avatar
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    thanks for replying. Oh my thats terrible that your patients became paralyzed after the surgery, very disturbing. Immediately after my surgery for several days I had no problems with my gait it was as though nothing ever happened, I thought I was "cured". But on about the 9th day the heaviness and jerky non fluid gait came back and hasnt left since.


    I have had function return since the surgery, I now walk upright thanks to PT and them teaching me again the correct mechanics to walking which has helped my posture and gotten me upright again. The function in my legs waxed and waned before the surgery between barely being able to hold myself up and walking "ok" short distances, never normal though. After the flex/extend MRI it was clear there was severe stenosis compressing cord on extension and progressingn neurological deficits and I needed surgery After the surgery now 8 1/2 months post op i can get around ok in my house, still problems with stairs even the 4 in my house but better. Stair cases I need to pull myself up with railing and sometimes cane, also going down stairs is tricky have to look at my feet, feel off balance. But it seems ive hit a plateau.

    I have been trying to lift 10 lbs on the cybex machine with my quadriceps for months now and it may as well be 100 lbs. My legs are wobbly and weak and sort of crumble when i get off and need to recover a few minutes. 20 lbs on add and abduction, 15 pounds hamstrings. When I walk around my neighborhood about 5 blocks I am limping and fall to my right and tired, my gait is jerky and non fluid and I stomp kind of. I am now doing exercises at PT to strengthen I dont know what muscle but to keep my feet from slapping on the ground. Sometimes my left legs swings around as I walk, its a drag.

    But i just cant run not on treadmill or street, there is no power. like an appliance where the plug has been pulled. A few steps and thats it. So that impairs the stair cliimbing and anything else I want to do. I am grateful to walk but walking with an abnormal gait has its own set of problems. I have always been active and it is very frustrating.

    My arms predom. the left still hurt, paresthesias etc. some days ok somedays terrible. I live on Long island and the rain the last few days made the pain etc. excrutiating even on meds. I have also had a problem with my calves since my gait went in 12/08 with spasm or cramps whatever they are, PT contantly stretches them and so do I and use stim and heat they have improved but need constant stretching and when they hurt it is extremely painful.

    I recently had another set of trigger points for myofascial pain in traps and scapula area and I know it is only a small amount of steroids but obviously there is some systemic effect as there is uterine bleeding everytime I have gotten epidurals etc, and this time about 3 days after the trigger point injections sometime happened at my house and I went to run to do something outside and was able to run more than 3 steps without crumbling. So I slammed the door and ran all the way around the block it felt as though nothing was ever wrong with my legs, but it only lasted about 20 minutes. So Im wondering if there is some cord swelling and even a tiny bit of steroids could help. It hasnt happend since. that was 5 weeks ago.

    I wish i had people with this condition to talk to I have searched and searched but from what I understand it is mostly older people spondylotic myelopathy although I suppose myelopathy is myelopathy whatever the cause just cant find a support group or such.

    I think my surgeon thinks I should have snapped back like a rubber band but in my heart I believe that the MVA when i was younger was th start of it and I guess it takes years to grow osteophytes and maybe compression has been going on for a very long time until it became obvious, perhaps too long.

    Just wondering if there is anything else I can do, after 8 1/2 months post op will i still recover function in my legs (my gait was abnormal for a year before the surgery), feels like ive hit a plateau and I try to be positive but i want to do so much and i cant. I sometimes feel in my heart this is as good as it will get, i am sure there will be some deficits without a doubt.

    Lastly what do you think about the steroid injections and what I described happened to my legs albeit for a very short time following them. I know it sounds improbable but it happened.

    sorry i wont write any posts this long if i post in the future. thanks for your time and response.

    sincerely,
    m.

  5. #5
    Junior Member VavaBoomer's Avatar
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    I have CSM, along with my other spinal cord problem. I would love to have someone to share with too. Everything you talked about hit home with me. I sent you a private e-mail, so it may go to this account or your own personal account.

  6. #6
    Mary,


    I also have CSM plus other spinal issues and am 49 yrs old. Your post also hit home with me including the MVA and head smacking the steering wheel (rear ended at 35 mph at a red light) back in 1998. Sorry you are here but would be glad to talk with you ~ totally understand not having someone to tak to who understands what your feeling.

    Liz
    PrpleHarly08

    Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

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    Senior Member marycsm77's Avatar
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    CSM at 48 again question to Dr. Wise or Nurse about AFO please

    Hi,

    I posted my whole story under CSM at 48. I have cervical spondylotic myelopathy for which i had fusion surgery 8 1/2 months ago at 2 levels. My gait started to get bad in 12/08. My question is although my walking is better besides limping, no power etc. I cannot pick up the ball of my right foot. Sometimes it is better than other times, sometimes i can pick up toes, sometimes more, sometimes barely the toes.

    In any event as a result of this and whatever neurological damage i have that prevents normal walking I dont always clear the pavement, when I am at PT on the treadmill my feet slap down so i am obviously not flexing or extending my ankle properly. They are working (finally) on that problem in PT with exercise but I was wondering if an AFO would benefit me in the mean time and in case it never goes away. As i say i dont have full blown foot drop but i do have a problem. I dont want to stop working on it, but I thought it might help me not to limp and slap my feet when I walk. I asked my physiatrist and he said "well if you keep on tripping maybe", i do trip but only occasionally. I just thought it might help me walk better.

    By the way as a note I have been walking like this for going on 2 years now, although as I say have regained function but still missing alot. (power mostly).

    Could you weigh in on this Dr. Wise or SCI nurse please?

    Sincerely,
    m.

  8. #8
    Senior Member marycsm77's Avatar
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    hey guys thanks for the responses. Nice talking to you "Vava", talk to you soon. Liz thanks for responding, I would like to email and chat, I am having problems with my hand and finally going to OT eval. Think I have a myelopathic hand. Anyway, i will email you soon if thats ok, maybe you can tell me your story

    m.

  9. #9
    Senior Member marycsm77's Avatar
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    OK Is there anyone that could advise me on AFO information, if you can and would...

    Could you please read my post that I wrote originally posted to the dr. or nurse. It is too hard to get an answer on this forum.

    Im sure they're are many many people with AFO's on this site, I would like some info not on what they do but if perhaps it would be suitable for me under my conditions.

    Thankyou anyone for any answers, I appreciate your time and help

    sincerely,
    m.

  10. #10
    An AFO will help you with foot clearance. If you are able to work on the muscles in physio to regain strength, that is the best route as once you start using the AFO you will stop using those muscles as much.
    Another option is the Walkaide device. Do a google search and watch a couple of videos.

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