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Thread: seeking others w/ CENTRAL CORD SYNDROME

  1. #41
    Moderator jody's Avatar
    Join Date
    Jan 2004
    east o the southern warren
    Quote 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.

  2. #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?!?!?

  3. #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's very much use it or lose it. I thought I was working my legs evenly...I wasn' 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.

  4. #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?

  5. #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.

  6. #46
    Senior Member trekker6's Avatar
    Join Date
    Mar 2011
    merritt island, florida
    I'm an incomplete ccs as of 1/1/11 this year from a skiing accident at mt bachelor, c4 level, walk very unsteadily due to spasticity,but do walk. Weak hands, spasticity through the whole body, want my body back, but it's gone, I just turned 60 and am male.
    In answer to cms's question, I took flomax to be able to urinate and now am off with no change. I was able to stop straight cathing {try that with hands that don't work] with full voiding of the bladder. Flomax relaxes the sphincter that controls voiding the bladder and in men relaxes the prostate. It's hard for your sister to accept the loss of control of her body, but she can't give up and the more she does, the better she'll get. She has to accept her loss and get on with her life and make the best of it, her kids need her and she needs to be there for them. Don't beat yourself up with guilt about bike riding with her during the accident, you were spending time with her doing something she enjoyed, it was good thing, the injury was an unfortunate accident and thankfully she didn't suffer complete severing of he spinal cord. I was fortunate to have my sister fly out to bend oregon to help with my care in the hospital regaining function, thank god for our families

  7. #47
    I'm sorry to hear of your injury (I know sorry is the wrong word but I don't know what else to say)!! It is a weird guilty feeling to be fine and active when my sister is going through this. My other sister and I talked her into going on the bike ride!

    Anyway, my mom told me that she actually went to her son's football game tonight! I know, not a big deal but it is a HUGE step for her. She was the mom that was always going to multiple events in one day and never stopped going. She was what you would call, "super-mom." Since her injury she hasn't gone anywhere in public besides a pedicure (and they had to basically drag her in).

    I hope you don't mind that I continue to "hang out" and ask questions here...basically until Chris will. She did mention to my mom that maybe she would like to talk to someone "like her." This is also a big step. I hope she's coming around.

    Thank you for the info about the flowmax. She was having trouble going at all - no spasms so I think she should be fine going off it soon?!??!?

    trekker6 - do you take neurotin or anything for nerve pain? Has your pain changed?

    Thank you all again for being so kind and helpful. I hope I'm not intruding!


  8. #48
    Senior Member trekker6's Avatar
    Join Date
    Mar 2011
    merritt island, florida
    I quit neurontin and baclofen, but suffer from increased spasticity and nerve pain because of it, it's my choice, I hate the side effects. Don't apologize for your concern, the more informed you are, the better armed you will be to help your sister. Most of us with ccs have stenosis of the spine, (narrowed opening in the spine), we were basically walking time bombs, it only takes a forward fall to initiate the injury, we find out too late about the stenosis and end up as incomplete quads. I had a laqminoplasty instead of a laminectomy and fusion to correct this condition. Sometimes I wish that I hadn't gone skiing that day or maybe gone down a different slope, but that accomplishes nothing but regret, the sooner your sister accepts this and gets on with her life the better off she'll be. As far as the flomax, have your sister talk to her doctor, like lavender said, we are all different.

  9. #49
    As hard as it is not to look back, you miss a great future looking back. I try to remember the past is the past. I lived it I loved it I don't regret it. I have no idea what tomorrow brings. But I do know that I'm looking forward to it. When I find myself getting down in the dumps, I look back at some really early really stupid childhood memory and I laugh. I've been blogging my way through this as a form of hand therapy but most importantly mental therapy. Each day takes its toll, I used to just be able to pick up a cup of coffee and drink it. Now I have to concentrate to do that. I laughed about it in the beginning, then it got a little tiring, almost 8 months in I don't really pay much attention. Walking takes planning. Have to budget my energy level. It is especially important to maintain walking ability. Sadly it often is a choice between comfort and function. I have found no way to take the medicines I've been prescribed and still walk. I lose most coordination when I take them. As a result I take natural and herbal remedies to just take the edge off the symptoms during the day. I can walk for most of the day, but with the weather changes I'm finding I do have to spend about half the day in my chair, if it's a walking intensive day. I have no plans to stop what I'm doing. I keep the chair in the car and I always have my cane. I did have to make a concession to get Dragon voice-recognition software. It was a difficult step for me to take. But it's made a big difference in my hand function. I can do more things now that are more beneficial to my hand strength instead of spending all my time typing and writing e-mails. Now I reserve typing primarily for my blog. In the kitchen when there is mixing to be done I do as much of it as I can by hand. I don't do well slicing vegetables, but I can cut large chunks so I do. It doesn't necessarily matter how well you do something, just that you do something. I hope you find this helpful..... I also hope Dragon didn't add in too many interesting words!! you can help your sister out by being there, you can help out any of your friends with a cord injury by being there....but ultimately doing something rests on their shoulders.

    CCS/Walker's a long story

  10. #50
    Senior Member trekker6's Avatar
    Join Date
    Mar 2011
    merritt island, florida
    lavender, what herbals do you use and how effective are they for you?

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