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Thread: seeking others w/ CENTRAL CORD SYNDROME

  1. #11
    Senior Member Evonne's Avatar
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    anyone else??
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  2. #12

    walking quad

    Evonne,

    I am a "walking quad". Only 10 weeks old and still in neck brace...which I hate! I am curious to hear about recovery rates also though I know all are different. I can walk, no device...some spascicity in both legs right worse than left and decreased sensation. Right arm/hand is worse...finally able to close right hand but not strongly. Right triceps and shoulder girdle are very weak and very slowly improving. I Also have spasticity in right arm. Left fingertips numb and right fingers except thumb and first finger improving and one thing that bothers me most is hypersensitivity in both hands.

    Joanne

  3. #13
    Senior Member Evonne's Avatar
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    Quote Originally Posted by ricochetred View Post
    Evonne,

    I am a "walking quad". Only 10 weeks old and still in neck brace...which I hate! I am curious to hear about recovery rates also though I know all are different. I can walk, no device...some spascicity in both legs right worse than left and decreased sensation. Right arm/hand is worse...finally able to close right hand but not strongly. Right triceps and shoulder girdle are very weak and very slowly improving. I Also have spasticity in right arm. Left fingertips numb and right fingers except thumb and first finger improving and one thing that bothers me most is hypersensitivity in both hands.

    Joanne
    Joanna,

    I am so sorry, I have not been hanging out here on CC very much lately so i did not see your post. R U still around??

    E
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  4. #14
    Has not been on the site since 12/29/08. She does have her PMs turned on, but did not turn on private e-mails, so it is unlikely you can contact her unless she comes back and sees any PMs.

    (KLD)

  5. #15
    Senior Member Evonne's Avatar
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    KDL....i take it she's still not back yet?? still have not had any luck finding anyone on the site with central cord....other than one Moderator but our situations r so different.

    any more people out there with central cord syndrome???


    thanks

    Evonne
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  6. #16
    Senior Member Evonne's Avatar
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    I am coming up on my 2 yr anniversary soon so I figured it was a good time to check for any more people who have Central Cord Syndrome. I have met 2 really nice women and I have even spoken to them on the telephone. It has been great to meet others with this somewhat rare form of SCI(or as I refer to it---the red-headed step child of the SCI world) It seems as though we all have pretty severe nerve pain and it is very hard to find something that will even touch it. I believe we just learn to live with what we have even if at times it drastically affects our quality of life.

    I would love to meet others that share in this fate. When I was told I had Central Cord, I tried to find info and meet other like myself and found it was very difficult. Well, 2 yrs later I have only met 2 other people with CCS. Would love to meet more. I don't wish this on anyone, but if u r new and u have CCS maybe now I can offer you some help and guide you.

    Evonne
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  7. #17
    Hello I too have a central cord syndrome injury.I had a fall at my home Jan 15th 2009. I did get a lot of return back early but it seems like now I will just have to learn to live without the rest. I am very thankful for what i have but it is hard not to wish for more.
    Last edited by ant111; 08-06-2009 at 10:14 PM.

  8. #18
    Super Moderator Sue Pendleton's Avatar
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    Evonne, Have you asked where you had rehab if you could post a note on any boards they have for sales, help needed, etc.? I know when I went through NRH in '94 there were at least 3 guys with CCS. There were also postings by both a formal and informal support group for all those with SCIs.

    I am curious as to any newbies diagnosed after about October 2007 if they were asked about participating in a clinical trial if surgery was needed? You can just PM me. This would have been for those in the acute stage.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #19
    Senior Member Evonne's Avatar
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    thanks Sue. ill drop u a line

    Evonne
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  10. #20
    Senior Member Evonne's Avatar
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    Thumbs up Central Cord Syndrome

    Just hoping to meet others that can say I also have Central Cord Syndrome. I just keep checking back every few months to see if anyone with CCS shows up.

    Evonne
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

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