Announcement

Collapse
No announcement yet.

seeking others w/ CENTRAL CORD SYNDROME

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    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

    Comment


    • #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, 10:14 PM.

      Comment


      • #18
        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.

        Comment


        • #19
          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

          Comment


          • #20
            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

            Comment


            • #21
              I have a central cord injury at C5. I can walk normally, but sometimes have balance problems. My hands and wrist function, but not my biceps or deltoids and my shoulder rotator cuffs are weak. All sensation, bowel, and bladder are normal.

              Comment


              • #22
                Here is an interesting link regarding possible treatment for central cord:

                http://nerve.wustl.edu/nd_centralcordsyndrome.php

                Comment


                • #23
                  C6 ccs. Happened in May of this year regained all but hand strength/dextarity

                  Comment


                  • #24
                    I have it also. I recovered most functions but the neuropathic pain and spaciticity/pain is pretty bad and hard to cope with 24/7. I'm just now realizing how this is tearing me down mentally and that's why I finally joined this forum.
                    2012 SCINetUSA Clinical Trial Support Squad Member
                    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                    Comment


                    • #25
                      Just checking to see if there were any newbies. Hope all is well.

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

                      walking quad-Central Cord Syndrome

                      Comment


                      • #26
                        Hi Evonne,
                        I'm a C1/C2 walking quad, with CCS and BSS, at 13 months post injury. I was injured when cutting down a treebranch. I spent 2 weeks in ICU, including a bout of pneumonia, and 4 weeks on a ventilator. I was taking a few steps with a walker at three weeks. By the time that I left rehab, at 3 months, I could walk a half mile with no assistive devices. My arms were very weak at that time. I have been working as hard as my fatigue will allow and have made large improvements. On a good day, I can walk 5 miles. I have also learned how to ride a bike again and rode 25 miles one day. Before my injury I was an avid runner, cyclist and nordic skier. My upper body has gained lots of strength. I did 10 pushups recently! My left hand is weak and lacks good sensation, but it is also slowly improving. My biggest frustration is the fatigue that keeps me from working harder. Just sitting up for a long while will tire me. I have found that if I go too hard that it will require lots of rest. My belief is that my spasticity plays a large part in this. I don't have much spasms any more, but I do have lots of tightness, even in my chest. My bladder is OK, but my bowel continence is a little worrisome.
                        Cheers.
                        C1/C2 walking quad, SCI from 4/2010

                        Comment


                        • #27
                          Hi all!! I do not have a sci but my sister does. We were on a bike trail on July 4th (of this year) and she fell into a shallow ravine and suffered a spinal contusion and has central cord syndrome. The injury is at C3 & C4. She is still in the hospital but has made awesome improvements in the past three weeks.

                          Right after the injury she couldn't move her arms/hand or legs/feet and she is now walking on her own (a little balance issues but not too much). Her right side was affected much more than her left and she has re-gained much of her left arm/hand use but her right is still slow. She also just peed for the first time without a catheter but is still not totally emptying her bladder so they have her on some medication and keeping her (in the hospital) a week longer to work on it.

                          She will be going home to her seven children and a grandchild. She is used to going 24/7 and doing everything for the kids. They are all very active in sports and is used to driving them everywhere and keeping up the house and helping with the yard (they live on 7+ acres).

                          She is really struggling with being mad/sad/pissed/etc. and I'm not sure what to do at this point. I have been to the hospital every day since the accident and she won't ask the doctors questions about the future. She says she doesn't want to think about the future!

                          She doesn't use the computer so I probably know more about her injury than she does. Her oldest daughter is also getting married Aug. 13 and she will have to wear the collar thingy and then have surgery after the wedding.

                          I could really use your advice, help, thoughts, etc. Thank you so much for listening!

                          Comment


                          • #28
                            Hi mcs,
                            Your sister is making amazing progress. How far can she walk now. I also have central cord syndrome. At three weeks, I could walk about ten feet. At about 15 monthis, I walked 7.5 miles. I also ride my bike again. When you say her right arm is slow, what does that mean? Good luck.
                            C1/C2 walking quad, SCI from 4/2010

                            Comment


                            • #29
                              Msc,

                              I sent u an email with my email address and phone number, hope to hear from you soon.

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

                              walking quad-Central Cord Syndrome

                              Comment


                              • #30
                                Hi, wow I think this is my first post! I'm central cord C6 main involvement. It was the result of surgery. My injury was 6mos old on the 4th of Aug. I've noticed 'healing' is back and forth for me.

                                I guess I should write something about myself somewhere on here.

                                CCS/Walker C6...it's a long story

                                Comment

                                Working...
                                X