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seeking others w/ CENTRAL CORD SYNDROME

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  • #31
    E, that sounds like a great person for you to contact. welcome to the brotherhood (or sisterhood)!
    http://www.dsportsman.com

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    • #32
      ill send u a PM right now thanks for thr response.


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

      walking quad-Central Cord Syndrome

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      • #33
        Evonne,
        I am fairly new to the site and just tripped over this post. I was injured before all the new diagnostic tools were available so, I am not sure exactly what I injured.
        I had a motorcycle accident back in 1977. I fractured C4 & C6 and shattered the front of C5. The surgeon took a piece of bone from my pelvis and fused everything back together.
        I did a stent in a Stryker bed and 6 months in a halo. When I was first injured, I had minimal movement of my arms with no hands and very little sensation.
        It took roughly a year to get to the point where I no longer used the chair on a daily basis. I use forearm crutches for mobility and have a limited range.
        I have issues with all muscle groups below the deltoids but, everything works to some degree and somewhat normal sensation.
        I have the weak quad like hands and general overall strength issues. I am lucky in that I don’t have the neuropathic pain but, have have a lot of the used and abused type of joint/muscle pain.
        All injury's are different but, the CSS label seem like a fit for me.
        1977 - C5 ambulating Quad

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        • #34
          Hey all!! I'm sorry I posted and bolted. My sister seems to be making progress (on the outside) but she is having a horrible time dealing with what happened. She has a lot of nerve pain and weakness in her upper arms/shoulders. Lots of burning in her legs. She is still off-balance when she walks a bit. She is so afraid of taking off her neck brace (even though she can have it off now).

          She seems very depressed to me. She took an anti-anxiety medication for a day and hated the side-effect so she stopped. She is just in a really bad place. She hates to be alone but when she's with others, she rarely talks. She wants to be outside 95% of the time.

          Her kids and husband don't know what to do to help her. My mom doesn't know what to do to help her. Me and her other (6) siblings don't know what to do to help her?!!?

          Is there anything you can tell me that might help? She won't seek help here or look on-line because she's afraid of what she will find.

          She's waiting for it all to "go away" even though she's been told a zillion times that it (the nerve pain/weakness) may not all go away.

          I want my sister back - her personality that is!!!!! Please help!!

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          • #35
            Originally posted by mcs View Post
            Hey all!! I'm sorry I posted and bolted. My sister seems to be making progress (on the outside) but she is having a horrible time dealing with what happened. She has a lot of nerve pain and weakness in her upper arms/shoulders. Lots of burning in her legs. She is still off-balance when she walks a bit. She is so afraid of taking off her neck brace (even though she can have it off now).

            She seems very depressed to me. She took an anti-anxiety medication for a day and hated the side-effect so she stopped. She is just in a really bad place. She hates to be alone but when she's with others, she rarely talks. She wants to be outside 95% of the time.

            Her kids and husband don't know what to do to help her. My mom doesn't know what to do to help her. Me and her other (6) siblings don't know what to do to help her?!!?

            Is there anything you can tell me that might help? She won't seek help here or look on-line because she's afraid of what she will find.

            She's waiting for it all to "go away" even though she's been told a zillion times that it (the nerve pain/weakness) may not all go away.

            I want my sister back - her personality that is!!!!! Please help!!
            Unfortunately, she has to want help to get better. This is her life now.

            I had a friend in rehab that was so focused on what she was before she could not live in the moment and realize what she had in the now (kids, husband, home, family, and life).

            We nor you can do that for her....she has to seek help.

            I feel for you and I don't know what to tell you. You are in a bad place. Just be there for her and her children/family.

            I have no advice other than you are not alone....(((hugs)))
            T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

            My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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            • #36
              Thank you for your post!!! I know she needs to want/seek help! It's just so hard to see her like this. She's a mother of 7 and used to going everywhere. She also lives in a town of 1900 people and she's embarrassed to go to church, the store, her kids football/volleyball, etc. games, etc.

              She's finally starting physical therapy so I'm hoping that will be good for her! She was actually in better spirits when she was in the hospital (she was in there for about 3.5 weeks). It's like as soon as she went home she spiraled into depression or something.

              She is also on quite a bit of medication: 900 Mg. Neurotin/day, some muscle relaxer, flowmax (she does have her bladder/bowels back but is still on it???), hydrocodone and a couple of other things. I wonder how much they alter her mood?

              How much of the pain/weakness do you GUESS will she live with? What about the Neurotin? I've heard different opinions of the stuff?

              Thank you again for any info/support you can give!

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              • #37
                im sorry, the neuro pain isnt going to go away. in fact is likely to get worse.
                neurontin works for some and not for others. For me it caused severe depression, and terrible thoughts. Lyrica is an option to try, but again it works for some, and not for others. at first I thought Lyrica was a wonderous drug, but as I built the dose up to theraputic, I developed panic attacs. really terrible panic attacks. I was so disappointed. Lyrica does work for some though who are dealing with neurologic pain.

                it's wonderful that she has regained bladder and bowel. with that the possibilies for her recovery are very encouraging.

                I remember thinking I couldnt live with the pain at all, and considered suicide. im not saying you get used to it, you kinda put it in a back room somewhere, but it is always a part of your every waking hours.

                about the embarressmemt, she will just have to grow out of that if she wants to get a life again.

                Before I came here to care cure, I thought I had it bad, but while here I have met many folks who have managed to make a good life and some of us here are actually happy even with the pain, no bladder/bowel, or need to use a ventilator, with no or little ability to move or even scratch an itch on their noses. I learned that people with much higher injuries, did more for themselves than I was doing for myself at the time.

                im not sayings its all tea and cherries now, care cure hasnt taken away my issues, but the support, knowledge of others, the nurses, the friendships I have gained here are as much a part of my moving on with what I have, as the effort I put in to gain physical streinth. she shouldnt be afraid of what she will find here. unless she is afraid to find out she has more abilities and more to work with than she thinks she does.


                How wonderful she has such a huge family that wants to help her. please tell her that she is welcome here, and not to be afraid to come and say hello.

                thank you for looking out for your sister.

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                • #38
                  Thank you for your post, Jody! Sigh...I just don't know what else to do. I can't force her to come here (she's not really computer savy anyway).

                  If she hears the pain will likely get worse, I think she will have a nervous breakdown BUT she needs to know what she's facing. She just keeps saying she's focusing on "getting better." She has come a long way from laying in that ravine. I feel like I live with some guilt because I was with her on the bike ride.

                  When/how does it get worse. I think it has gotten worse already. It was better right after surgery and then she started getting more pain and burning. It had gone away in her legs and then came back. We rub her arms and shoulders as much as possible and want to help her but at some point she has to "figure it out." I know that sounds harsh but she CAN do a lot of things that she doesn't do because someone does it for her (get a glass of water, make a sandwich, get a plate of food, etc.).

                  I was with her everyday (in the hospital) for 3.5 weeks and now we are 2 hours apart and I see her as much as possible. Her older kids have left home for college and the oldest is now married. Her younger kids are all in school and her husband is working a lot of the time so my mom goes and gets her most days.

                  I'm rambling...just need to get it out. Don't know what to do...

                  Thanks again for the support. I love her so much and miss "her."

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                  • #39
                    Sorry, I have another question. My sister does know I come on here.

                    She asked if I read about anyone who had their bladder function restored taking Flowmax (or similar) and had it stop working after going off the drug? Her bladder is working on Flowmax and she is afraid to go off it for fear of reversal.

                    Any experience with this?

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                    • #40
                      dont feel guilty. it doesnt help you or her. guilt just breaks your heart so try not to pile guilt on top of your sadness and concern. It wasnt your fault, and you being hurt instead of her wouldnt help a thing either.

                      she is newly injured, and an incomplete, meaning she has some undamaged spinal cord, rather than completely severed or compressed. that means she has a chance of reganing what she has lost and she has reason to be hopeful with the progress she seems to have made so far. her focasing on healing is great. you are right about her doing things for herself though, if at all she can. there are lots of little ways to make a task get done.

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                      • #41
                        Originally posted by mcs View Post
                        Sorry, I have another question. My sister does know I come on here.

                        She asked if I read about anyone who had their bladder function restored taking Flowmax (or similar) and had it stop working after going off the drug? Her bladder is working on Flowmax and she is afraid to go off it for fear of reversal.

                        Any experience with this?
                        as far as I know that is for bladder spasms. that drug relaxes the bladder, why would she go off it if it is working? if she has a neurogenic bladder due to her cervical injury, she is likely to get bladder spasms, and spasms cause you to pee yourself, so if she stops the medication her bladder spasms may return.

                        Botox is an option for some people.

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                        • #42
                          They started her on the flowmax in the hospital because she wasn't able to go on her own. She was alternating between a foley and straight cath and they put her on the flowmax and something else hoping to help her go. She did eventually go (but wasn't fully eliminating) right before getting released from the hospital (they were going to teach her to cath herself). They kept her in the hospital longer to see if she would fully eliminate. She did but kept getting UTIs. Anyway, I guess I don't understand if it's a drug she will be on...forever...or something she can go off and have normal bladder function?!?!?

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                          • #43
                            MCS .....Hi, I'm still pretty new in the CCS world. I think for those of us affected it's hard to accept because it's kind of hard to describe/define. I go back and forth with cane sometimes a chair now because of some inherent stupidity that caught up with me. For your sister....it's very much use it or lose it. I thought I was working my legs evenly...I wasn't...now I'm kind of backwards in healing.

                            For hand function, she has to use them. With walking injuries it's imperative they maintain that function. I have to do things a different way now, but I do them.

                            I'm just over 7 months into my injury...everyday is a push pull battle. I have a black mood every so often then pull it together. I have to listen to happy music some days just to smile, yell at people who try to help me, smile when I feel like crying and then work on the daily struggle I have with crushing guilt.

                            I've had some success with vitamins and herbals. I take neurontin at night. My nerve pain has changed several times in intensity and sensations. I'm supposed to take 1800mg a day...I take less than that but I only take it at night to sleep. If your sister needs a friend either you or she can feel free to email me...I am at times lousy about responding. I'm getting my bearings and am feeling like I might be able to help a person or two with some of this.
                            CCS/Walker C6...it's a long story

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                            • #44
                              Thank you, lavenderthistle! I've been trying to read everything I can about her injury (because she won't). She does try to walk and does want to get better but she just sits there so much of the time.

                              For the first several weeks, she watched funny movies so she says no more movies. When I'm back, I try to put on fun music and make life as normal as possible but she just can't snap out of it. I don't expect her to just suddenly be super-happy and start break dancing but anything would be great. She's always been so busy that she didn't have a lot of time for herself and now that she does, we can't seem to find her a hobby. Knitting, drawing, ANYTHING! Of course, I don't want to push too much either.

                              What is your injury if you don't mind me asking?!?! She is having a lot of trouble sleeping. Maybe she should increase her dose (of neurotin) at night?

                              I'd love if she would e-mail or call someone...but I don't know if she will right now! Now, I would love to!

                              She is starting physical therapy soon - do you think it would benefit her to add in some other "workouts" with someone on on of the off days or is that too much?

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                              • #45
                                I had a few dings from 4-7 but my main area of injury is 6. Finding hand things can be a challenge. I'm still working on that. Anything that uses the parts of the body affected are good for therapy. It has to be something the person normally does for it to be a habit. I started blogging to work on my hands. I kept walking but still managed to overly weaken one leg.

                                All this is a HUGE learning curve. I know several CCS folks and not one of us is the same.

                                Feel free to pm me, drop me an email etc...there are so many issues that vary with each of us.
                                CCS/Walker C6...it's a long story

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