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Thread: T12 Questions

  1. #1

    T12 Questions

    Aug. 26 2007 I was involved in a car accident in Colorado while driving from Maryland to California. I was in the passenger seat wearing a seatbelt while the car apparently flipped twice lengthways (or so the police and witnesses say; I do not remember anything). I was the only one of three hurt. T12 burst fracture, compressed my spinal cord...bla bla bla...
    Now I am in outpatient rehab and have gotten a bit better ( I guess).
    I can move my legs inwards but not outwards, i can lift my feel off the ground while sitting in my wheelchair, but not sitting on a mat (if that makes any sense), I have terrible burning pain (like my legs are submerged in ice cold water), and recently my legs have started to stretch like someone is pulling them out of my hips. This is quite painful!
    I usually have bladder control even though I have to self cath. The problem is for some reason sometimes I go a week unable to hold my bladder when I feel full. Then, all of a sudden I can hold it again. I only sometimes wet my bed.
    I can get an erection but only half the saize as before, but I can not have sex ( I have tried) with my girlfriend (who is so amazing because she has stood beside me through this and not left me) but can not finish. I lose my erection only a minute after attempting sex. I can not masterbate either because I can never finish.
    Sorry to go on and on.... I am so cunfused, scared, mad, sad, etc....
    Does anyone or has anyone deal/dealt with these situations? Do they get better/Worse?
    Thank you for listening. Any insight would be sooooooo greatly appreciated.

  2. #2
    Do you have a good physiatrist to help you with these issues? A good neurologic urologist? Where did you do your rehab? Is the place you are going for therapy a specialty SCI program?

    With the return you are getting, some therapy would be an excellent idea, esp. if you could get into the pool or get into a suspended gait ambulation program.

    What are you doing to control your spasticity? Stretching and ROM? Standing? Proning (laying on your stomach)? Antispasticity medications?

    Have you tried Viagra/Levitra/Cialis for your erection problems? Have you tried any other methods for achieving and maintaining an erection? The inability to ejaculate or have orgasm from genital stimulation is common, but there are also some things to try for this. Try looking over the posts on our Relationships and Sexuality forum and posting questions there.

    You can find a lot of information and support here on all our forums. Welcome to CareCure!

    (KLD)

  3. #3
    Senior Member
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    Hi nathanjmac. Welcome.

    Each one of us with a spinal cord injury (SCI) has a different experience, so no one here can know exactly what you can expect in the future. You are still a new injury. I am T11-12, more than 15 years post so I will try to compare myself to you.

    You talk about moving your legs, lifting them and moving them inward. This sounds like your hip-flexor muscles. Immediately after my injury I could not use these. But after about 6 mo. to a year I began to get control of them. They have grown strong enough for me to pull my legs up to my chest when lying on my back and up about a foot in the air when seated in my chair. I can pull my legs inward and outward with my hip-flexors too. You’re hip-flexors can prove to be very valuable in PT, so it’s worth strengthening and stretching them. They will help you with walking with crutches and leg braces if in fact you are able. Expect this to be very difficult.

    The icy-burning feeling you’re having is normal. I have had this since about 3 months after my injury.

    The “stretching” feeling your experiencing sounds like muscle spasms. They are mostly typical also. They may be annoying but they will help to keep your leg muscles toned. I have found them to be a blessing.

    I know you are experiencing pain and discomfort but that can be a blessing too. It will cause you to move around more and help keep those nasty pressure sores away. I have learned to ignore the pain most of the time.

    I’m not sure what you mean by having bladder control, especially if you have to cath. It is possible to get back most of this function, but it sounds more like you can push the urine out when you are very full. I can do this sometimes too. It isn’t normal function. You may be able to use a condom catheter if you have some control of your bladder. I do not.

    The erections you’re getting are probably just a reflex reaction right now. In the future, who knows? Some members have gotten more function and can even ejaculate but these are few. Actual orgasms are even more unlikely.

    Keep in mind that all of these things you are now experiencing may change for the better and probably will, at least slightly. If you are really lucky you may see a significant gain, but you will have to work, wait, and see.

  4. #4

    thanks

    Yes I spent the fist month at N. Colorado Medical Hospital. Was accepted into Craig (which was the biggest mistake I ever made not going) but chose to fly back home to be close to friends ansd family to the National Rehabilitation Hospital in Washington DC.
    I was inpatient there for 30 days and now have been in the outpatient program between 3 and 5 days per week.
    Yes, I have doctors, pain, spasticity, neuropathic medications. I stretch, am fortunate enough to have an FES bike at home, have used unsuccessfully a harness locomat machine, parallel bars, etc, etc, etc,.....
    I actually walked using a walker on Valentines day of this year, but after doing that for a week ended up damaging my elbow and now by doctors orders can not use my arm until the tendons have repaired themselves...(more therapy) and try no tusing your arms when your legs don;t work!
    However since then, my legs seem to have gotten worse. Now they feel like clouds and air, however they are buring like they are on fire. I can not support my legs in the harness, and the stretching and pulling have gotten sooooo much worse.
    Maybe its in my head but I feel like I am regressing. I am just so scared of life in a wheelchair. I was on my way to California to open a restaurant with my best friend (who was in the car with me and who is there waiting for me) and all i know is the restaurant business and I can not picture myself doing that unable to stand.
    I seemed too close to a recovery and now I feel so far away.......

  5. #5
    Senior Member
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    Don't despair. Your elbow will heal, and you will be back in your walker soon. Your injury is still so new. You have plenty of time to expect returns. It took me nearly 18 months to get a proper gait with my walker. Now, more than four years post, I'm working at using a cane.

    You will get back to the kitchen, too. Restaurant work is a calling. With a calling like that, you will find a way to make it happen. Hang in there! We are here for you.

  6. #6
    Sounds like you need to talk to your physician about getting into pool therapy for now, and getting your spasticity under control.

    What are you doing for your neuropathic pain? Meds? TENS? Acupuncture?

    I have a friend who runs a very successful restaurant that she owns in Southern CA. She has a C6 SCI. Of course she does not do the cooking...she functions as the owner/manager and does some hostessing, but she hires the staff and determines the menu, hires entertainment and runs their very successful wine events. I might be able to put you in touch if you are interested in talking to her.

    (KLD)

  7. #7

    Thanks again

    First, thanks Ala and Sofla for your posts. I appreciate you taking the time to share your perosnal experiences with me. It is so comforting to be able to compare stories. I suppose it is still early and patience is another 'virtue' I am learning to deal with.
    (KLD)-Thank you too. I am currently taking 40mg of baclofen 2X day and 60mg at bedtime. I am taking 900mg of neurontin 3X a day for the neuropathic pain. For the pain pain I am taking oxycodone as needed but that doesn't touch the pain therefore usually end up with an empty container 10 days after I fill it.
    I wish there was something I could take at night to help sleep and stop the discomfort. I think i suffer from a phobia of not being able to move my legs and feet. I feel like they are tied up and i keep trying to kick as hard as i can to untie them and never can...This keeps me awake going crazy until 3 sometimes 4 AM.
    I am sorry, but I do not know what TENS is? Acupuncture, I have not tried. About the restaurant: I would love to hear how she does it. I have managed restaurants and private clubs and done all the front of the house duties. Its funny, that I get more pleasure out of the dirty side of the business- the cooking. I need to be able to cook in the restraurant. Cooking is my passion and without being able to do that, I'd rather not even have the restaurant. Besides my business partner can't even boil a pot of water

  8. #8
    You can still cook! Of course with some adjustments. If you can't reach things, have your sous chef do it. work the front burners, wear protective pants in case of grease splatters,ect. If your to be the head chef, then you must delegate anyway, just do the dish you really want to do.
    I've made 3 tier wedding cakes from a chair, so never fear, you can do it too.
    Deborah

  9. #9
    Senior Member
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    If oxycodone is no help with your pain, and you are finishing your 30 day supply in ten days, don't bother getting the Rx refilled. It is highly addictive. The withdrawal just might be the cause of your sleep disorder. Have you tried more natural, less addicting remedies? Adult beverages work on my pain. I rarely get the pain after the evening cocktail hour. Some people say pot works, but it did nothing for me.

    I stopped taking baclofen. My therapist explained that it is counterproductive to building muscles required for rehab. Also, it depressed me. About an hour after taking it I found myself in the depths of despair. Talk with your doctor about this if you want to stop. Your body is dependant and you must wean off.

    There are other drugs you could try if Neurontin is not working. Lyrica and Cymbalta come to mind. Ask your doctor. Neurontin is another drug you must wean off.

    I fully understand your passion for cooking. My son has been cooking since he was a toddler, and demanded that I allow him to scramble his own eggs. He has trained under some of the finest chefs in Fort Lauderdale. In your own kitchen you should be able to adapt a station for accessibility. You might have to vacate during crunch time, but most chefs move over to expedite anyway. Hire a top notch sous chef, and you are all set to go. You can do this!!

  10. #10
    Senior Member
    Join Date
    May 2006
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    Hi Nathan

    I am also a T12-L3 fusion/fracture survivor....burst fracture at L1.

    Dont give up your dreams!!! Your world can be adapted and you can cook or do whatever you want. You have to be creative. If cooking is your passion, then you shall cook. I burn everything mostly since I moved from NC to high altitude Colorado.

    Like the nurse said...you need pool therapy even if you have to go the local Y on your own. Most of them are accessible.

    As for the burning...I eventually got used to it. I am soon to be (May 5) 19 years post accident. Just try different meds until you find the right ones. We have all struggled with this and the sex issues.

    Dont be afraid to ask here at CC. Most people here have already forged the path you are taking and dont mind offering advice to help. Hopefully you will keep gaining strenth.

    Just dont give up....if you ever have questions dont hesitate to PM me.
    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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