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seeking others w/ CENTRAL CORD SYNDROME

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    Originally posted by Evonne View Post
    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 central cord syndrome as the result of a tackle just over one year ago, I can walk like normal and I can jog but it doesnt feel right, If I walk for too long my left leg fatigues and my left knee starts to hyper extend, I still wake up every morning with bad neck and back pain

    Comment


      Welcome Henare, glad you found us...sad you had to

      We are at times a quiet bunch....read through our names, profiles, etc post a question, pm one of us. Though we can be quiet we are helpful.
      CCS/Walker C6...it's a long story

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        Hi Lav, I jumped on here just to see others stories and how long post injury they are and see if anyone has fully recovered. I have had good recovery and I just started to get back into weight training. My left arm and shoulder are very weak and also my left hand is weak and not very coordinated, lately I found that I've been getting very bad pain in my left shoulder that runs down my bicep and it makes my forearm Itchi. I also get a pain between my shoulder blades that feels like its pushing right through to my chest. I am not on any meds but I think I should be.

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          try some natural remedies first before jumping to a prescription if you can. I managed mine largely with vitamins and supplements the first year. Gradually as the weather changed I noticed some rather nasty issues developing. I did eventually end up with prescriptions but I still take herbal remedies too with the doctor's approval.

          I've gotten back a lot. I go back and forth with function. I do know an ob/gyn/surgeon/triathlete with central cord syndrome. He had his before I had mine, he was already back in surgery and noticed only some finger weakness. He did have issues competing in his first triathalon post injury with the swim. The cold ocean water hit his weaker arm and he started getting the odd spasms I was having. They sap the strength from a muscle rather than increase tone.

          His advice and my surgeon's advice was to make sure to do everyday things often, use knives, instead of using a mixer all the time beat some things by hand. Cooking is some of the best hand and arm therapy ever. The triathelete/doctor's take was to even work out unloading the dishwasher...every thing you do is a gain of some type. Working on balance...yoga is great for muscle control.
          CCS/Walker C6...it's a long story

          Comment


            Welcome to the CCS thread, Henare. Evonne is our resident pro.

            This is a unique group in the sci world. It's been a big help to me to be connected with all of you, although lavenderthistle is right, we tend to be quiet. So, don't be afraid to wake us up from time to time with a post. Being new to this game I'm sure you have lots of questions.

            Lavenderthistle, that's interesting about your surgeon/triathlete friend. It's hard to believe he has returned to competing. The docs advice to move a lot is good. I think that is part of my problem. Since I work I tend to go to the office and sit too much. Even though I'm motivated to workout (see my posts on the workout thread), I don't think I'm doing enough in the day to make the kind of progress I would like. Regaining stamina is my big challenge.

            Just to bring you up to speed, Henare. Like you I take no meds, although there are times I have to take Advil or Aleve. I've been considering Tramadol but haven't called the doc yet. Lack of stamina is my biggest challenge. After that I have parasthesia and dysaesthesia. I can walk, jog a little, and have full use of arms, hands and fingers. The cold makes me stiffen up, especially if it is a wet cold at the end of the day. I have enough overall control that I'm able to ride a road bike. And last Friday I returned to skiing (limited to 8 runs). If I sit up in a hard chair for long all my nerve junk starts screaming. If I walk past 2 miles I feel like I've just finished running 10. Can't complain about all that I can do, but there are times when the junk threatens to overwhelm. Thought you might want to know the latest with me. Thanks.
            CCS/Walking Quad

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              Henare welcome to CureCare and also this special group. I hope you have many questions that we can help you with and I look forward to getting to know you better along the way.

              Revis-so proud to see you skiing and loving it!!! So Awesome! Keep up the good work.

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

              walking quad-Central Cord Syndrome

              Comment


                thanks guys, yous have been more help than my Doctor. I was just wondering, when I work out be it weight training or cardio I am sweating and the weather is warm also but it feels like i'm cold and I have goose bumps and everything, is it just me?

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                  I frequently have issues with hot and cold. I sometimes will sweat excessively with even slight exertion. Also, when I get cold, it takes forever for me to warm up. Therapists and doctors don't put much credence in this being related to my CCS, but I know it is. On my chest area, I have spots that do not feel hot/cold and some that do. Instinctively, I just know that it is related to my CCS.

                  On another note, please keep me in your thoughts/prayers. I am on total disability now after working for 10 years post injury. Also just got divorced. It's a double whammy that has me worried about my future.

                  Comment


                    [QUOTE=jeffrx;1672500 Therapists and doctors don't put much credence in this being related to my CCS, but I know it is. On my chest area, I have spots that do not feel hot/cold and some that do. Instinctively, I just know that it is related to my CCS.

                    On another note, please keep me in your thoughts/prayers. I am on total disability now after working for 10 years post injury. Also just got divorced. It's a double whammy that has me worried about my future.[/QUOTE]

                    Any doc that is really familiar with CCS and SCI should know that one's ability to thermo-regulate is affected greatly by both. For each person it is different. I do best in temps that are between 60 and 80 degrees with sunshine and dry. Living in N. ID that means July. Hah! My feet and hands can really get cold, but as soon as I'm in a hot room I have burning in my right leg and upper arms. Clammy cold can cause me to freeze up and barely move. When temps get above 90 I feel like I'm on fire. Thank God Hanare that you can sweat. You may need to bundle up more when you work out. When I do my daily walk in the cold I always have on more clothes than others. Sorry to hear about your life challenges, Jeffrx. Indeed, will pray for you. Sounds rough.
                    CCS/Walking Quad

                    Comment


                      Originally posted by jeffrx View Post
                      I frequently have issues with hot and cold. I sometimes will sweat excessively with even slight exertion. Also, when I get cold, it takes forever for me to warm up. Therapists and doctors don't put much credence in this being related to my CCS, but I know it is. On my chest area, I have spots that do not feel hot/cold and some that do. Instinctively, I just know that it is related to my CCS.

                      On another note, please keep me in your thoughts/prayers. I am on total disability now after working for 10 years post injury. Also just got divorced. It's a double whammy that has me worried about my future.
                      I too have issues with hot and cold. I am not able to regulate my body tempture. If the room temperature is freezing then I'm freezing and vice versa.

                      Jeffrx u will b in my thoughts and prayers. Sorry to hear about your job and the divorce. I wish u the best of luck

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

                      walking quad-Central Cord Syndrome

                      Comment


                        Wow Jeffrx so sorry to hear about that whammy! You are in my thoughts and prayers absolutely.

                        I am hot in cold in odd ways. I think most of you know about the burning nerve pain I whine about in the summer. I do still suffer with the cold, but it's a more manageable suffer. My doctor and I don't often talk about my temp regulation. It just is there and is what it is. I do still sweat, but I sweat much less than I did before. I also notice different body parts can be different temperatures...a true pleasure at bed time. I sleep alone, my husband and I are both ok with that. I also sleep in fits and snatches. A little here, a little there.
                        CCS/Walker C6...it's a long story

                        Comment


                          Happy belated Cinco de Mayo my CCS family!

                          I hope you all are well, I'm thinking of you even if we don't always communicate much on here.

                          I challenged myself with tamale making last week. It kind of left me spent but the mountain felt so good when I was on top of it! I did 116 of them and they were well received.
                          CCS/Walker C6...it's a long story

                          Comment


                            Originally posted by lavenderthistle View Post
                            Happy belated Cinco de Mayo my CCS family!

                            I hope you all are well, I'm thinking of you even if we don't always communicate much on here.

                            I challenged myself with tamale making last week. It kind of left me spent but the mountain felt so good when I was on top of it! I did 116 of them and they were well received.
                            There is no better food than homemade tamales!

                            Comment


                              Well, I still have someone so how about you do a popover and visit for some tamales! A party is usually such fun.
                              CCS/Walker C6...it's a long story

                              Comment


                                Yes, things have been quiet on the CCS link as of late. How are all you guys doing in the warm weather? That is if you have warm weather yet. It has been in the high 90's now here in Central California so it's getting pretty hot.

                                The warm weather does not bother me like the cold temperature so things are going ok so far this summer. The kids will be out of school soon so that will make the summer a lot more fun. We are going on a family cruise to the Bahamas in June so I'm looking forward to that trip.

                                What about you guys any cool summer plans?

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

                                walking quad-Central Cord Syndrome

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