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    Old 09-16-2006, 08:12 AM   #1
    Backinthesaddle
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    Post ACDF spinal cord compression-permanent damage

    I am a bit upset and frustrated.............That said I had a ACDF after 18m of severe spinal cord compression. I have no nerve damage according to EMG and as far as post Xrays all is good. However I have suffered arm and hand issues along with the usual neck and shoulder pain for about 16 months. I was under the impression that once I had the surgery and the spinal cord was released I would be OK. Seems my doctor was optimistic about that. Well here I am 7 months post and still have the same pain issues to some lesser degree then before but always there. I am seeing a pain management doctor now and will start a 2 day a week for 4 weeks program to do pain management through PT, bio feedback and group sessions. My frustration is that I am told that I most likely will never be freed of these issues that they are lifelong and that I will need to learn how to deal with them. I just cannot imagine a life like this. I am not in severe pain thank God however I cannot do the things I did.

    I rode my horses yesterday lightly and am paying for it today. So what is life going to be like? I want to work out again and ride like I used to. I guess I just need to learn to live with this but cannot see the next 40 years like this and expecting it to get worse as I age.

    Has anyone else been told that their issues are permanent?

    I went for MMI rating this week and I have no idea what the doctor will give me but he did say that YES I have a permanent disability and that Yes this is forever and that my life has been changed and pain management is all there is. He was very nice and really understanding much better then the MMI doc I had for my 2002 injury. But he just reiterated what I didn't want to hear and that it was permanent.

    Anyone?????????????

     
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    Old 09-16-2006, 08:21 AM   #2
    jcjwillis
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    Re: Post ACDF spinal cord compression-permanent damage

    Sorry to hear that you are still feeling so bad and that the doctors feel that it could be permanent. Try not to be discouraged there are a lot of things that can be done to improve the pain and new treatment options are always coming out. Hopefully you will be able to adjust to your situation and find away to make things as normal as possible! Keep researching your problem and seek other opinions if necessary. I to suffer from chronic spinal problems but I try to adjust and not get to depressed.
    Remember that you are not alone and that many on this board have similar problems and with each others help we can endure.
    You will be in my thoughts and prayers!
    Hope this is of some help to you, stay in touch!

     
    Old 09-16-2006, 09:13 AM   #3
    sunshine221
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    Re: Post ACDF spinal cord compression-permanent damage

    Hey backinthesaddle"

    I think we're in similar shoes. I see the physiatrist again Wed and hopefully will get the full report on my July MRI. The short version from the NS was -- spinal fluid is moving good but he showed me a dark spot that he said was permanent damage. I'm not in pain, but my gait isn't good and minor numbness issues.

    I do workout - swim, Curves, treadmill - I played an hour of tennis a few weeks ago and I've done some bicycling - I just don't walk normally!!!

    I can live with my body as is as long as I know it won't get worse (except for minor ups and downs), but friends want me to go find a research hospital that "can help"

    I'll update with what the doc says WEd.

    Hang in there.

    Gloria

     
    Old 09-16-2006, 07:46 PM   #4
    Backinthesaddle
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    Re: Post ACDF spinal cord compression-permanent damage

    Hi guys. Gloria I wish I didn't have pain. If I did the same as you I would be flat on my back with vicaden. I have yet gone to the gym and worked out. I do try from time to time with my weights and bands. I also have a treadmill and have walked on it. I ride only occasionally I am tempted to just do life as I used to to see what happens. I can only imagine since just a little bit of normal has be doing nothing.

    I am just so frustrated as I really believed that the ACDF would end all the pain. No doctor told me it wouldn't. Sadly there isn't anything they can do. Supposedly my body is ok it is my mind. I still haven't figured that out yet as I believe that there is still something pressing on a nerve. Stinks Stinks and sucks! That is all I can say.

     
    Old 09-17-2006, 08:36 PM   #5
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    Re: Post ACDF spinal cord compression-permanent damage

    I totally undertstand what you are saying. After my 2nd surgery, I am improved but still having problems and will never, ever be the same again. I have been off work since May and this week I was told I need to start the Long Term Disability process. It sucks. I was at top of my game before this happened and now I am relegated to a life of managing pain, limiting what I do, hoping to ward off more problems, and trying to live as normal life that I can create.

    Instead of thinking of what we can't do, I've been encouraged to focus on what I can do. When I get depressed I remind myself that there are lots worse fates, and I keep researching, hoping to find the magic solution.

    My 18 year old niece has just been diagnosed with 2 bulges (C4-6) from an injury when she was 13. She has DDD - serious disc dessication at multiple levels and effacement. I had to cry because I know what she is facing for the rest of her life. At least medicine is advancing fast and maybe they will unlock the secrets to our problems and find a way to cure without surgery.

    Keep posting!

     
    Old 09-21-2006, 11:20 AM   #6
    sunshine221
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    Re: Post ACDF spinal cord compression-permanent damage

    Here's what the physiatrist said to me -- she said that when there is spinal cord compression and it is released, a race begins. The race is nerve regeneration verus scar tissue formation. In my case the scar tissue seems to have won and left me with some permanent damage and more questions to ask the NS in two weeks. She said to keep up with my exercises, but stopped formal PT. I'm going to try Baclefen (SP?) to reduce the spacticity in my muscles. I probably won't start it until Sunday because I'm away for the weekend.

     
    Old 09-21-2006, 07:03 PM   #7
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    Re: Post ACDF spinal cord compression-permanent damage

    Although my pain isn't as severe as yours, I have accepted the fact that I will always have to deal with some sort of discomfort the rest of my life. It's been almost 2 years since my last surgery. Some days I feel pain free but usually I have to deal with aches and pains. I can never get a good night sleep unless I take something to help knock me out like Tylenol PM.

    I've recently moved to Michigan and haven't established a Dr. yet but I got the name of one who has a good reputation. Fortunately I work in Human Resources and don't have a physically demanding job. There is a woman I work with in the same boat as the rest of us. We compare notes and suggestions. One of my duties at work, I'm the United Way Coordinator. I often get to visit some of the organizations that is helped with United Way funds. Many of the people I meet have far worse problems than I do. It gives me more perspective and makes my problems seem trivial.

    Frank

     
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