Announcement

Collapse
No announcement yet.

seeking others w/ CENTRAL CORD SYNDROME

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

    [QUOTE=Revis;1495557]I'm curious about those of you who have had CCS for more than 2 years. Have you continued to gain more stamina, even after 2 years?

    Have had CCS for 10 years. Worked as retail pharmacist until last year when a fall broke 2 ribs and my collar bone. Haven't been the same since. My shoulders are very painful. 3 years ago was walking 2 miles per day- now have a hard time getting around the grocery store. I sometimes think I need a wheelchair, but can't handle a manual and don't need an electric. Just hanging in there like the rest of you.

    Comment


      Originally posted by faceplant View Post
      I just have to tell you all that as someone who is still under a year post injury ( It will be a year in May for me) It gives me great hope to see that you are all still making strides 2 and three years and beyond! So thanks for the bottom of my heart for keeping the rest of us going!!
      Almost 2 years for me - and while progress definitely slowed after year 1 it's still coming for me. Continuing a therapy routine is the key for all of us walkers because we're so incomplete. I swear everytime I think I'm done, I see new twitches, or new movement! Return aside - endurance gets better by leaps and bounds everyday if you keep fighting with the same conviction as day 1!

      Comment


        Originally posted by Revis View Post
        I've had to learn that the heaviness is neurological deficit. Rather than not moving at all, ccs folks like us, can move limbs, but without the same power, stamina and quickness we had before injury. It's a strange thing, in that on the one hand we can move, and that is great. OTH, as we move, things just don't feel the same, in fact, it's depressing because we keep hoping and expecting it will all come back to normal.

        Oh man - nailed it! The heaviness is rough somedays. For me it's my left arm & shoulder. Sometimes I wouldn't mind amputating the damn thing!

        Comment


          Hi Jeffrx/Walking for me...
          Had it for 2 years and 5 months, no progress in over year now and not expecting any main symptoms that bother are ...
          Coldness particularly my hands they are terrible.
          Tightness around middle of body as though there is an elastic band right round my mid body.
          Lack of strenght in shoulder and arms and some days are very heavy
          Sometimes a little back pain and tingling in spine occasional spasm
          A feeling of something on right side above hip up to ribs sometimes a bit painful but normally just stiff and feeling of something, I nearly always sleep on right side and thats what I think it is
          Slight spastic gait when I walk some days worse than others.
          Some anxiety and depression
          Cold weather is very unkind to me
          I've had a couple of falls which haven't helped one fall in Jan think i cracked a bone in shoulder was abroad so couldn't do much, it still quite sore things like that seem to take an eternity to get over.
          I think trhe worse is thinking about it all the time, I'm 54 and thinking what it will be like in 10 years, every ache and pain causes me general health anxiety.

          Hope it helps

          Comment


            Originally posted by Shearsy63 View Post
            Hi Jeffrx/Walking for me...
            Had it for 2 years and 5 months, no progress in over year now and not expecting any main symptoms that bother are ...
            Coldness particularly my hands they are terrible.
            Tightness around middle of body as though there is an elastic band right round my mid body.
            Lack of strenght in shoulder and arms and some days are very heavy
            Sometimes a little back pain and tingling in spine occasional spasm
            A feeling of something on right side above hip up to ribs sometimes a bit painful but normally just stiff and feeling of something, I nearly always sleep on right side and thats what I think it is
            Slight spastic gait when I walk some days worse than others.
            Some anxiety and depression
            Cold weather is very unkind to me
            I've had a couple of falls which haven't helped one fall in Jan think i cracked a bone in shoulder was abroad so couldn't do much, it still quite sore things like that seem to take an eternity to get over.
            I think trhe worse is thinking about it all the time, I'm 54 and thinking what it will be like in 10 years, every ache and pain causes me general health anxiety.

            Hope it helps
            I also get the cold hands...not sure why we get that...if it's a poor circulation issue or its part of the neuropathic pain or what but even my husband notices that my hands are always cold. For me it's the Neuropathic pain and numbness and not always knowing where the feet are that bothers me the most plus the pain in the shoulder blades and neck and the muscle spasms and twitching. I hope that your anxiety gets better...it does help having the support of everyone here. I hope your not falling too much cause you don't want to do anymore damage. I ended up with a cane because I kept falling down the stairs, but I hope that it doesn't become a permanent part of my life!! Hang in there!! I hope things will get better for you!!
            ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

            Comment


              Cold weather is very hard. Double for me now since my wife and I are separated and I have limited dressing skills. The main thing to remember is to take care of your shoulders. Walking is wonderful, but paralyzed muscles do not give enough support for the arms/shoulders. Always use some type of support. I am considering getting a wheelchair with one-arm drive so I can go back to work. BTW does anyone have any experience with these. My left arm is very weak- don't know if I could operate one or not. (Right arm totally paralyzed.

              Comment


                Ok....catching all my fellow walking Q's up....

                baclo now 10mg 3/day
                neurontin 800 mg 3-4/day
                nitrofurantoin 50mg 1/day (6mos)
                cathing 2 x's day

                also own a lovely purple wheelchair

                The clonus got out of hand, but the baclo seems to be countering the weaking spasms. I feel other muscles actually working in my legs the right way again. I've had some good days up and down the stairs with no cane. Cane is still a necessity in any smaller crowd, or out in the open, uneven ground..etc. Chair is a necessity in a large crowd, long shopping trips, or when the spasms are NOT my friend.

                Urine crap....ok the UTI's came back. The Crede thing hasn't left me emptying all the way the last several months. It started about the same time I had to try other bowel maneuvers....Gosh why does this sound more like a top secret mission than just going to the friggin bathroom?! I ended up with back to back UTI's (back cramps and blood clots and blood drops oh my!) I got surly and embarrassed.

                I have also learned that my symptoms are likely to get worse this summer nerve pain wise. A friend shared that if last summer I felt like Joan of Arc and this year it started with the first warm day...it might just be my response to heat. If so...I may be certifiably insane before fall. This time last year I was in New Zealand and was tossed into mid June summer when I got back. Last year the weather was also really mild in early June when we left. This level of pain didn't hit until Mid June and I wasn't ready to scream until early July...then 300mg neurontin 3/day was ok for a month..then it went to 600 mg/3 day until April. Soooooo if anyone has any experience with unholy burning pain in the warm months subsiding the the cooler months I would love to know what to expect.

                I've also noticed as the burning nerve pain gets worse the numbness in other areas gets worse, as do the odd sensations (creepy crawlies, spreading numb patches, the desire to have others inspect me for the ant colony that surely MUST be crawling in my hair)

                Also I am hyper flexible...I'm a bad bad girl and haven't been following through with deep breathing exercises, so my ribs have begun popping out of place because I've only been chest breathing.

                Disc on 2 has started pressing on some nerves when I'm tense (13 year old son, so this is most of the time) so I have started manual decompression after massage to make me touchable again.

                Just a tiny update ...
                CCS/Walker C6...it's a long story

                Comment


                  Bummer about having to cath and the UTI's it seems we all suffer with those lovely bladder symptoms that we are not even suppose to have....funny how that works. I hope it gets better for you. How in heavens did you find an purple wheelchair? It sounds so fun!! If you have to use one then at least it can be fun right!!! It's been over a year for me now still struggling with that darn nerve pain that we all HATE but despite hating being on Oxycontin, Topamax, and Lexapro it all seems to be helping now it's a matter of getting use to all of the meds at once. I still use my TENS unit too and try to get my stretches in without doing to much. That seems to be the problem I have doing enough to stay active without over doing it.....it's a fine line these days. I am off work again due to the pain, hopefully it's a minor set back and I can get back to working. I keep wanting to look further down the road at what the future is going to look like but know I can't get there until i walk the journey first so....one step at a time of course with the aid of my cane......

                  I hope everyone is having a good spring!!
                  ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

                  Comment


                    I just spent the night in the va hospital sci unit, so many power chairs there, I was in a quad room, with two complete quads and a complete paraplegic, our lives are so different, they have caregivers for bowel and bladder, feeding and every part of their lives. I almost felt guilty to be in the same ward, I walk around with no care and no meds, but my life is still difficult with weak hands and a bad gait and the numbness and hypersensitivity, they offered me a wheelchair there cause I had a very bad fall a week earlier, but I refused. I know I'm not lucky to be an incomplete c-4, but life could be a lot harder, need to make the best of it.
                    "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

                    Comment


                      Sorry to hear about your fall trekker6 and the hospital stay! I hope your feeling better.
                      ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

                      Comment


                        Originally posted by faceplant View Post
                        Sorry to hear about your fall trekker6 and the hospital stay! I hope your feeling better.
                        Oh, I didn't go for the fall, I went for my annual they do all sorts of tests to monitor our conditions, because of nerve loss we can't always feel problems that happen to our bodies, so glad I'm in the VA system, they have so much experience with scis, the care is wonderful, I wish it was available to all sci patients.
                        "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

                        Comment


                          Wow that's pretty cool kind of a once a year once over....good deal! Well vets should get some benefit for the service they give to our country!! Good that you got in there and make sure things are working ok!!
                          ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

                          Comment


                            Originally posted by trekker6 View Post
                            I just spent the night in the va hospital sci unit, so many power chairs there, I was in a quad room, with two complete quads and a complete paraplegic, our lives are so different, they have caregivers for bowel and bladder, feeding and every part of their lives. I almost felt guilty to be in the same ward, I walk around with no care and no meds, but my life is still difficult with weak hands and a bad gait and the numbness and hypersensitivity, they offered me a wheelchair there cause I had a very bad fall a week earlier, but I refused. I know I'm not lucky to be an incomplete c-4, but life could be a lot harder, need to make the best of it.
                            Bring it in for the hug trekker....**hug**. It truly is like no man's land for us. We dont truly fit in either world. I blogged about that sings...both sides now....we truly can see life from both sides. Not faded memories of what life used to be like walking, because we do that. But very real challenges, and issues from both sides. Im in no way saying wheelers have an easier life; perhaps more predictable, but certainly not easier. We get treated ( or at least i have) like we arent "true"sci.

                            I love online support because i couldn't look a non walking quad in the face and ask for emotional support. Online supporting is different. Sorry, bit of a ramble, its past my bedtime
                            CCS/Walker C6...it's a long story

                            Comment


                              Originally posted by trekker6 View Post
                              Oh, I didn't go for the fall, I went for my annual they do all sorts of tests to monitor our conditions, because of nerve loss we can't always feel problems that happen to our bodies, so glad I'm in the VA system, they have so much experience with scis, the care is wonderful, I wish it was available to all sci patients.
                              Glad to know that you have this level of follow-up examination and support though the VA. Did you get a relatively good report?

                              Also glad to know that you didn't head to the VA because of your fall. Have you recovered from that? Only scrapes and bruises, I hope! Still, that must have been traumatic.
                              CCS/Walking Quad

                              Comment


                                Trekker that's a sobering reminder of how, on one level, we are lucky. When I was at rehab at Shepherd in Atlanta, I will never forget joining a group of SCI patients to play a game of Trivial Pursuit. I walked up and sat down...they were of course all in wheelchairs. Conversation stopped and everyone looked at me as if to say "what the hell are you doing here". Until it was time for me to roll the dice, which was very hard for me. You could almost feel the tension in the group relax, like everyone said to themselves, "Oh, OK - his arms are screwed up" 10 years ago and I remember it like it was yesterday. There are no easy SCI's, yet like someone said, I find it hard to look at a wheelchair bound quad and complain about my life.

                                Comment

                                Working...
                                X