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Finally after all these years...

I have been searching since I was 17 for what was causing my odd gait. People at school used to make fun of the way I walked.  I grew up had kids and eventually my problems walking got so pronounced that people kept saying what's wrong with you and all I could say is that my back burned and my hips hurt. I received the diagnosis of foot drop and was isued AFO braces.  They looked and looked for the reason I had this issue. Never could find it. I have been tested for everything from MS MD and CP  to hip displasia. Thankfully none of these apply. I started seeing a new neurologist after my last one said he just didn't know what was wrong. And I was beginning to get discouraged because they were looking for why my back burned and my hips hurt and why I couldn't pick my leg up to walk and we weren't getting anywhere except to find out that I have bursitis in my hips. This is why I have been in a wheelchair for 3 years. So they started concentrating on my carpel tunnel and discover that I had a pinched nerve in my neck. So off to another MRI I went. And they told me that I had severe spinal compression in my c4 c5 and c6 area. I was like ok. Until I saw the neurosurgeon and the MRI images and it was horrifying. He said I had a pancake for a spinal cord. And that everything below my compression area was scarred and probably wouldn't heal. My husband who has been supportive of me through this all finally had to concede that I may not get out of this chair. The neurosurgeon told my husband when he asked if the surgery that I am having in 4 days (acdf ) would help me with my ability to walk that it was more of a keep me from getting worse thing that a make me better thing. Where do u go with that. I am trying to look at it as step one to maybe feeling better since I have been on step zero for 20 years.  At this point quality of life is my concern.  I am not even 40 and I don't want to give up.
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13

Comments

  • Ellen625EEllen625 New Jersey, USPosts: 757
    Hi asmerella
    It must be somewhat of a relief for you to finally have a new doctor figure out your issue after all of these years! Hopefully surgery will help.
    Best of luck and hang in there!
    Ellen 
  • smartens162smartens162 Manitoba, CanadaPosts: 387
    I'll be praying for you asmerella!  Miracles do happen, and I'm asking for one for you and your family!
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  • Lainey1967Lainey1967 Bishopbriggs Posts: 35
    Hi Asmerella. All that you been through soubds awful but hopefully you now on the right path with your new doctor. Wishing you well on your road to recovery.
  • nutcase007nnutcase007 United StatesPosts: 274

    asmerella - My heart aches for you after reading your story!  I lived with a broken C3/C4 facet joint for 36 years and when my neurosurgeon performed surgery on me 2+ years ago, he said my spinal cord was the worst bruised spinal cord he ever saw without it being severed.

    I commend you for trying to obtain some "quality of life".  I'd expect you have asked yourself , "what if this problem had been found years ago?"  Maybe you are different than me, but I left the "what if" question tear myself up way too much.  It is a very valid emotion,  but don't dwell it right now.  Put your energy into getting ready for surgery and post surgery.    

    My thoughts with you during/after surgery.  Please update us as you feel able.  

  • Bruce EitmanBruce Eitman Akron, OH, USAPosts: 1,437

    asmerella

    Welcome to the Spine-Health forums.

    What a story.  I am so glad that you finally have a diagnosis and a plan going forward.  Thanks for sharing it with us.

    Good luck with the surgery and please let us know how your recovery goes.

    Please click on the following link for some helpful information to get you started Welcome to Spine-Health

    Bruce

    Read my story at Bruce - My Story
    ACDF C4-C5-C6-C7, and getting better every day
    It has been a process of healing, learning, exercising, and resting - and figuring out when to do which.

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  • asmerellaasmerella Kentucky (KY)Posts: 13
    Well I'm leaving in a few for my pre op and tomorrow is my surgery.  Thank u all for the kind and encouraging words. I will keep you posted.  
  • Good luck and,see you on the other side!
    William Garza
    Spine-Health Mod
    erator

    Welcome to Spine-Health

  • asmerellaasmerella Kentucky (KY)Posts: 13
    So I am home and I am n severe pain from the swelling around my neck and shoulders.  I can barely swallow.  I am taking pain meds but I was just wondering if anyone could give me a ballpark estimate of how long it will be before my throat starts to chill out.  My neurosurgeon told me that my muscles were extremely tight to the point that he had a hard time getting in there to do my operation.  So he did a lot more pulling on my neck and back than usual.  I know that u guys can't tell me exactly how long but just a guess would be nice...or personal experience  perhaps. Thanks.
  • memerainboltmemerainbolt IndianaPosts: 3,437
    asmerella, so glad to hear you're home!! I don't have any experience with what you've gone thru but read your story and was so glad you found someone to help you. Take care and let us know how you're doing.
    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • asmerellaasmerella Kentucky (KY)Posts: 13
    Going to have to go to the er cause my throat is swelling shut 
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