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Thread: Frustrated, need the right questions!

  1. #11
    Super Moderator Sue Pendleton's Avatar
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    Hey UK? Have you had any inprovement? Talked to the original doctor or someone new? Let us know how things are going.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  2. #12
    Hi, my doctor's appointment is on Wednesday so I can give an update then.

    EDIT: I kinda wanna change my nickname too if possible, it's a bit depressing! RossUK would be nice.

  3. #13
    Good Luck to you RossUK on Wed. If I may offer some unsolicited advice... write down every question that you may have before you get there and bring it with you. Is any one going with you? Sometimes that is helpful. Take care!

  4. #14
    Just got back from my appointment with the doctor and got a lot answered, just had a nice chat in general. She was very impressed with my improvement over the last year, I don't notice it so much myself as it's a bit more gradual from my perspective but it's nice to be reminded how far I've come. Was a bit peaved to find that my impulse strength won't improve as I was hoping to be able to play football with my housemates in a league when I improve more (I can't kick a ball with much speed). Have decided to take up boxing instead!
    The thing I had was spinal infarction at T4 apparently, never did find a cause although cocaine is still the primary suspect. Don't do drugs kids .
    The urologist is being sorted out now so I'm looking forward to that as well.

    Anyway on the whole it was a positive experience, not looking forward to urodynamics though :S

  5. #15
    Hi RossUK (and Nancy and Sue):

    I am glad your appointment went well and you got the answers you were looking for. I was also diagnosed with spinal infarction, but it was C2-T2.

    What is impulse strength?

    Urodynamics is not fun, but well worth it. My bladder therapy is going well. I am doing FES for my bladder and supposedly it will reduce urgency and increase external sphincter strength. Some days I think it is working and some days not. I do 30 minutes a day with the FES machine 15 @ 20 pulses a minute (to reduce urgency) and 15 @ 50 pulses per minute (to strengthen the muscle). It is a 10 second on and 20 seconds of rest. After the therapist shows you how to do it, you do it at home, which is nice. Then I go in each week and have an evaluation. They also have me focusing on hip exercises… I don’t know if your hips are weak, but if they are they effect your B&B.

    Just thought I would share J

  6. #16
    Hi RossUK, (lucky dog and Sue!)
    I am happy for you that your visit went well and that you have continued to improve over the last year. You are young and I hope that you will continue to improve. It's the same with my son.. the improvements are there but not as obvious so it is nice when they are pointed out. I don't know what impulse strength is either. But how do they know that it won't improve? Do you work out? Any physical therapy or strength training? (NO weight lifting!) My son could not do a sit up in September(in gym class) but the other night he did five. (he is angry about it says he used to be able to do 80... but that's for another thread!) I feel bad for you about football. I wouldn't want you to give up any hope. Just coincidence but my son has been asking us for boxing lessons for the last six months. There's a place by us that has a gym, trainers and boxing, so we are going to let him do it. I just think it so weird that that is what you decided too.
    Don't be so hard on yourself about the possible cause. It was that one time and it was a couple of weeks before your infarction. In my unprofessional opinion I don't think that was the cause. ( otherwise we would be hearing of alot more spinal infarcs related to use) You'll probably never know what actually caused it. I have a couple of guesses about my son but we'll never know for sure. I've stopped wondering about that as much these days and I just want him to continue to get better.
    The urodynamics study isn't pleasant but well worth it for all the info it will give you. Good Luck with all this.
    Luckydog, That's interesting about fes. I am going to look for info about it.
    I learn so much from others here. Thank you! Nancy

  7. #17
    Super Moderator Sue Pendleton's Avatar
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    UK, I'm sorry but I believe you're stuck with your name. I'll double check but we've been getting a lot of requests lately.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  8. #18
    That's okay it's only a name.

  9. #19
    Erm I think I used completely the wrong term regarding impulse strength I mean like how quick I can move my legs not how strong they are.
    That FES machine sounds interesting I will inquire about it when I see the urologist.

  10. #20
    Senior Member
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    Hi RossUK,

    I had Urodynamics done a couple of years back, and as luckydog says, it's not fun, but the 'hardest' part (if you see what I mean) for me was that the nurse doing the test was very pretty...........it was a tad embarrassing at the end, but I guess she's seen it happen before

    Ian

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