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Thread: Frustrated, need the right questions!

  1. #1

    Unhappy Frustrated, need the right questions!

    Hi everyone

    About 3 1/2 years ago about 10am on the last day of school (may 18 2004) I started to feel a horrific pain in my back that carried on for hours, as well as the feeling of crushing around my chest. I walked to the doctor after an hour or two when it would not stop, he had a quick look at me and said I was okay and that it would pass.
    When I left the doctors I went to the toilet and found it very hard to pass urine. On the way back from the doctors to school I started to lose the ability to walk in a straight line and it felt like I was drunk the way I was walking! By the time my mum came to take me to hospital I had completely lost the ability to move any muscles below the chest and my legs felt numb.

    The first 1-2 days the hospital could not work out what was wrong with me but eventually with the help of a specialist from another nearby hospital they said they had worked out what was wrong with me. They that they could however not work out what the original cause was. I will point out here that some weeks prior I tried Cocaine for the first and only time (always a massive regret). I told the doctors this but they said it couldn't be the cause.


    I had lost all movement from anywhere below a line that was about the level with my nipples, as well as sensation of temperature and pain. I did not lose proprioception or basic touch. I also lost bladder control (did not urinate for over a day I think until they cathed me!) and bowel control.

    I seem to be one of the lucky ones as over the course of 3 months I slowly started to regain most of my movement and could walk again as well as some of the sensation I lost. 3 1/2 years later I feel that I have advanced a lot and can actually run (although I feel very clumsy doing it!)
    My bowel control is a lot better, I have not had any accidents in this department since december last year, although my bowels still don't feel like they work properly (it is very hard to go to the toilet sometimes, or I don't get much warning).
    The main problem I am having is with my bladder which is still overactive. I will just get random contractions and will not be able to hold it in very long. It can also be embarassing as I will often go a few hours without having to go to the loo and then 3 times in 20 minutes! I find it much easier to hold it in when standing up, especially when walking about, although walking seems to trigger the bladder very often too! I also wet the bed at night quite often.
    I feel like I am suffering in silence as I have told none of my friends about this embarassing problem and I often have had to make excuses for embarassing situations, or disappear suddenly.
    (One interesting note: I recently got a job that is only 4 hour shifts and I have only once needed the toilet during any of the 10 or so shifts I have done so far... as soon as I leave work I need have the familiar and uncontrollable urge though!?)
    (Another interesting note: I discovered that lightly pinching the end of my penis can often cause the urge to subside, does anyone know why this is?)

    I don't feel like I have been given much information about my condition by the people that treated me, probably at the time due to my age (I was 17, am now 20). Since they are not searching around for a cure/treatment for me themselves I feel that I have sat around and done nothing for long enough and I need to take this into my own hands. It shocks me thinking about how long I have just put up with these problems and how pathetic that is! Especially at my age, just over a year ago I moved out to go to university and I feel like I'm missinng out on a lot of things due to my various problems.

    I have an appointment with the specialist that did the original diagnosis in 2 weeks time and feel like this is my chance to find out everything about my condition that I should know but I would like some advice on which questions to ask!


    P.S. Thanks for reading this if you did, I've never told anyone who wasn't in my family or a doctor the whole story before and it feel very good just to get it off my chest.

  2. #2
    Hi Uk:

    What was your diagnosis? Did you have a spinal cord stroke? This can be caused by cocaine, but I think that would happen rather quickly and not a few days after.

    I had a spinal cord stroke caused by the strep throat virus clogging up the blood supply going to my spinal cord. I could not walk within 1 hour of the onset of my back pain. I have recovered similarly to you. I am 8 months post. I have similar bowel and bladder issues. I take Detrol LA for the urgency. There are other medications to help with these symptoms. You really need to see an Urologist, who can do a study of your bladder and prescribe you the right medication.

    I wish you the best.

  3. #3
    The doctors told me spinal stroke but they also told me this was a layman's term and never really said what the proper term was? It always annoyed me how patronising they were as I'm not an idiot and have always been quite interested in medical matters anyway.

    The cocaine was more than a few days before but I always think that it would be the most likely reason why a perfectly healthy 17 year old lad would suddenly become so ill. Of course I'm probably wrong and the doctors are probably right but I still give myself a hard time over that stupid mistake.

    I really do need to get a urologist.
    I went through a very dark time from about 6 months after the illness to about a year ago when I just kind of gave up on life, never left the house, didn't really put any effort into anything, it was bad of me I know but well at the time I couldn't see things clearly. It's wierd looking back, I was at my strongest and most positive while I was still stuck in a bed paralysed, when I had reached what felt like the full extent of my recovery all that strength and positivity that had helped me to get to that point, that all my family and friends had praised me for just went out the window. I lost friends because I never saw them any more.
    Since I went to university I have kind of had life 'thrust' upon me, so the depression is not a problem for me any more, I have made countless new friends, go out all the time and I have managed to act so normal that none of my new friends even know that there was even anything wrong with me until I tell them! Of course part of that is how well I managed to hide going to the toilet so often, so I will still duck out of activities where I know it is going to be a problem. This also means I haven't really had any meaningful sexual relationship as I'm too scared to spend the night in bed with a girl in case she wakes up in a pool of my urine.

    However it has taken until now for me to put my foot down and decide to do my absolute best to recover as best I can in all respects.

    It's very nice to be able to speak to someone with the same problems as well! I'm going to look like a complete and utter knobhead saying this but sometimes the worst thing for me about this whole condition is exactly that no one does notice it, no one really knows how badly it affects my life every day. Even my family who know the full extent of my problems do not really understand how bladder problems can so badly affect me. I even find myself sometimes wishing that I was back in a wheelchair but with full bladder function as stupid as that sounds.

    Would it be best if I just got straight on finding a urologist tommorow or do you think that when I see my specialist in 2 weeks that she would be a better person to find one through than my GP?

  4. #4
    I know exactly how you feel. I feel the same way. I am currently in the spot where my recovery is slowing down and I am faced with the reality that this may be as good as it gets. Everyone thinks I am perfectly normal, but just like you I no longer do a lot of activities I love due to my bladder. Being male you do have the option to where an external catheter, which can help with the need to use the toilet all the time. No one would know you are wearing it. As a female, I do not have the same option.

    You want to see an Urologist that specializes in nerve damage. Maybe one of the SCI Nurses can recommend how to find one in your area. I am currently doing pelvic floor rehab; I just started so I am unsure how it is going yet, but it may be an option for you. I am not sure how it works for males, but you should ask your Dr about it and biofeedback.

    I was also perfectly health when I had the stroke. I had just run five miles the night before and though I was not 17, I was only 28. It is a terribleā€¦ words could never do it justice.

  5. #5
    I did use an external cath for a while (they're like a condom right?) but I had a few problems where the tube would get twisted or something similar and I would not notice until the thing effectively popped off and that caused even more embarassing scenes than just going to to the toilet more often. I don't feel like I need things like those now anyway because I can cope with it most of the time. My biggest annoyance is at night. Waking up in a pool of your own urine is never nice. I got an alarm to try and train myself to wake up but it never really worked very well - I'd always wake up to the sound of the alarm and a wet bed, and then one morning I awoke to found it had broken through "water damage" . I'd say I wake up with a wet bed around 20% of the time, although I recently went an entire month without a single accident (followed by a week of an accident everyday but two... that's life). This is definitely an improvement from the year following the illness when it was more like 75% of the time. If you are doing all the right things from this point you should see much better recovery than I have done.

    I think I will ask for a urologist that specialises in nerve damage when I have my appointment with the neurology specialist. Thanks for the great advice, it feels wierd having someone who hasn't had to deal with this horrible condition as long as I am comforting me but c'est la vie!

    Just out of interest as well, what sensation did you lose and have you regained any? I find now that I can feel certain pains (mostly sharper pains like pinching) but then blunt pains don't seem to register. Temperature hasn't really come back at all.

  6. #6
    I lost temperature and pin prick below my chest. Neither has returned. I also lost sweating, which has not returned. My Neurologist says my autonomic tracks were the most affected by my stroke. I can live without hot/cold/pain no problem. The sweating is a problem when I work out. But overall if my bowel and bladder get better, I will be the happiest person in the world. Muscle wise, I have problems with my right hip and left thumb, but they are just weakness issues.

    For the first 6 months I set an alarm to wake up and use the restroom at night. Now I wake up automatically. My concern about your nighttime accidents is that you are overfilling your bladder, and experiencing overflow incontinence. If this is the case, you MUST set an alarm and wake up or limit your fluid intake before bed. If you continually stretch your bladder you will do permanent damage and you are inhibiting recovery. I am very happy to hear you will be seeing an Urologist soon. i am sure s/he will help you with your problem. You will be able to overcome the nighttime issues... I just know it.

  7. #7
    HI UK sufferer,
    My son is 16. When he was 15 he experienced what was thought to be a fibrocartilagenous embolism of his spine. It is considered an almost stroke of the spine. His initial symptoms are very similar to yours, but he was awaken by the pain and within three hours was paralyzed for the chest down atT5/T6. If you look at my older posts his full story is there,it is alot to re write. I read your post last night and couldn't believe the similarities. It is such an uunusual event. MY son experiences the same type of emotions that you talk about. It could of been my son writing it.
    This whole thing for us is very hard to accept.
    My son is on Ditropan and it is very helpful for the urgent symptoms. He also has to avoid caffeine. He tries not to drink anything after a certain time so that he does not have problems at night. Maybe these things can help you. I am glad that you are seeing an urologist too. I am sure that he will be able to help you.
    Hi Luckydog! I was just thinking about you the other day because I was talking about acupuncture for Brian. As far as Brian getting return of sensation we have had a few things happen. This summer he had a splinter in his foot and actually felt it. He also had a piece of plastic stuck in his foot a couple of weeks ago and felt the pain. Both his knees were hurting him a few weeks ago. and also the bottoms of his toes sweat from being in his shoes. We are hoping more comes back. Your injury is more recent so I tell you these things to offer you hope. Keep me posted ion your recovery. Take care, Nancy

  8. #8
    Quote Originally Posted by luckydog
    I lost temperature and pin prick below my chest. Neither has returned. I also lost sweating, which has not returned. My Neurologist says my autonomic tracks were the most affected by my stroke. I can live without hot/cold/pain no problem. The sweating is a problem when I work out. But overall if my bowel and bladder get better, I will be the happiest person in the world. Muscle wise, I have problems with my right hip and left thumb, but they are just weakness issues.

    For the first 6 months I set an alarm to wake up and use the restroom at night. Now I wake up automatically. My concern about your nighttime accidents is that you are overfilling your bladder, and experiencing overflow incontinence. If this is the case, you MUST set an alarm and wake up or limit your fluid intake before bed. If you continually stretch your bladder you will do permanent damage and you are inhibiting recovery. I am very happy to hear you will be seeing an Urologist soon. i am sure s/he will help you with your problem. You will be able to overcome the nighttime issues... I just know it.
    Thanks, I feel exactly the same way as the bold part.
    I have similar problems sensation wise, although I do sweat. I remember that my feet were always very dry at first though but this has fixed itself over time. Maybe it will for you.

    I will try setting an alarm for halfway through the night. I do try to limit my fluid intake in the 2 hours before I go to bed recently. It seems to have paid off as I haven't had any night time accident in the last 10 days (touch wood). I will ask the urologist about stretched bladder when I see them too.

    Nancy E I read about your son's story. It is sad to hear. I think the age it happened to your son and I is a particularly bad time when we are going through a lot of changes anyway, I know at 17 I was just starting to settle myself down a bit, concentrate at college etc and then BAM this illness hits me and screws everything up! Sounds like it has been the same for your son. At least it seems he has a very caring mother, that is something to be very thankful for!
    I read in another thread someone mentioned 4-AP to you, has your son tried this? It seems quite promising to help things a little.

  9. #9
    Super Moderator Sue Pendleton's Avatar
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    If you had MRIs and lumbar punctures done at the time of injury ask your neurologist to explain the results. Make sure you uderstand what the doctor says before you leave. Write down his reasoning for your diagnosis and any words you might want to look up.
    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.

  10. #10
    hi UK,
    We did not try 4AP. We had been told that sometimes there are bowel symptoms with that and to be honest his bowel behaving takes priority right now. We can't risk having any bad episodes if you know what I mean. But we will consider it for the future. Did you have MRIs at the time of your injury? I am curious to hear your diagnosis. It sounds like the same level as my son. I am really glad that you are back at school and reclaiming your life. I hope that after you consult with your doctors they will address some of the issues that you are still dealing with. You sound like a good guy and I am sorry that this happened to you. Please keep us posted with any updates. I am glad that you take part here. My son doesn't, I think that he is not ready. but I share with him alot of the info I have learned here with him. I told him about you, He really related. Take care. I pray alot and will include you in my prayers . Nancy

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