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Thread: Is this forum for injuries like mine?

  1. #1

    Is this forum for injuries like mine?

    I was in a severe auto accident almost 4 months ago. My pelvis broke and I had surgery placing a 7 inch screw from one hip, through my sacrum where the pelvis had split, breaking the sacrum, to the other hip. I also have a mild brain injury.
    I think the pelvis break was such a concern that no one took the other things I was saying seriously. Now, my lower back hurts so much that I am still on morphine, I feel like my "tail bone" is still broken, I still can walk only a few steps and that is with a walker or crutches, I have difficulty emptying my bladder, I have numbness in parts of my genitals, and reduced feeling in other parts. I saw a urologist for the first time last week. She did a post void residual urine scan and immediately told me I have to start self cathing 3x daily for urine retention.
    I am being referred to a neurologist and will hopefully enter the brain program when my medical issues have stabilized.
    No one has figured out or explained to me what is going on and I am clueless. Is it permanent? A spinal injury?
    I found this forum late last night and hoped I was not out of place with registering. I am not sure if this forum is for injuries like mine or not. If not, please just clue me in., no hard feelings.
    If so,where do I start? Does it sound familiar?
    And totally off topic, but can anyone tell me if it is possible to miss a lot of urine when self cathing, as last night I cathed, still felt like I needed to go, and then peed another 6 oz over the next 10-15 minutes. Or where should I post that question?
    Sorry this is so long. Thanks for reading!

  2. #2
    Senior Member ~Lin's Avatar
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    When you're cathing, do you remove the catheter slowly? For example, once the urine starts streaming out I push the catheter in a little higher. When the urine stops, you start removing it very slowly and usually get more urine because you need to lower the catheter so the eyelit isn't above the level of urine once most of it is gone. Also, if you have sensation with cathing I frequently am left with the sensation that I still need to pee after cathing, its something that has improved with time though and doesn't happen every time anymore or last as long as it used to. I guess its the urethra getting adjusted to the catheters.

    I'm an odd member out without SCI but a rare genetic disorder and neuro disorder. But I would consider you welcome here...

    Have you been evaluated for Cauda Equina?
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  3. #3
    No, I haven't been evaluated for that yet, but I have read enough to suspect that is where this is headed. I am being referred to a neurologist this week.
    I have some sensation with cathing. I did not realize until I started cathing that I cannot feel the urethra and surrounding area. (I also realized I dont have as much sensation in my inner thighs.) But I do have a spot with sensation deep inside near the bladder. And withdrawing the cath hurts! When it passes over the really painful area, I go ahead and withdraw it because it hurts too badly to go slow. At that point, I thought I was pretty much empty, but perhaps I am wrong. I don't know why it hurts more than insertion.
    And by the way, when I was in the rehab hospital, there were a number of service dogs, both facility dogs and personal assistants. I remember thinking that the only good thing about this might be getting a cool service dog. Lol.
    Thank you for the warm welcome. I have wonderful friends and family, but few of them know what I am talking about. It feels good to make contact with someone who doesn't react as if I am speaking Greek!

  4. #4
    Welcome to CareCure. I would also want to see that you have been checked for either a conus medularis or cauda equina injury, which would be cord or peripheral nerve injuries consistent with where your fractures of your spine and pelvis are.

    When you were in rehab, did you have a physiatrist as your physician? Have you been evaluated by a physiatrist or a neurologist? Is the urologist you are seeing going to do urodynamics studies? Do you also have problems with bowel control and sexual dysfunction?

    Where are you located? It would help to know so that we could better direct you to appropriate resources.

    (KLD)

  5. #5
    When I was in rehab, I was non weight bearing, so they primarily worked on chair transfers and the like before sending me home. I was given permission by my ortho to start weight bearing a month ago. I am able to awkwardly struggle with a walker but feel very off balance, weak, and hurt a lot. I am actually still on morphine, both extended release and instant. I cannot function at all without them.
    I do not believe I have seen a physiatrist or neurologist (my memory is Swiss cheese, so I can't say for sure.) The doctor over my case specializes in rehab. I have talked about a lot of this stuff all along, but I think everyone thought it would go away? They hoped function would come back when I could be on my feet again. As for urodynamics, the doctor was talking about a test to see if my bladder is contracting, so I believe so.
    I have a hard time emptying my bowels. If the stool is hard, I have to push on my perineum with my hand. If soft, I end up not feeling empty. It is like I can't remember how to push effectively. Sexually, feeling is reduced but not completely inhibited.
    I am in North Florida. I was in Brooks Rehab but have been shifted to Americare home health because Brooks was full. My PT is so sweet, but doesn't seem to understand what ever it is I have going on.
    I don't know if this is relevant, but I couldn't have a BM at all after the surgery for quite some time. I went 12 days without actually. The nurse suggested my intestines basically didn't wake up after anesthesia. They finally did a SMOG enema, which was nightmarish but got things moving, albeit sluggishly for quite some time. Now I go about every three days for two days in a row then skip 3 again.
    Sorry if this is irrelevant. I'm just so new I don't know what is related. Like my ankle pain. Is that connected?
    Thank you so much! It is such a relief to finally "talk" to someone who understands an might have a clue what is going on!

  6. #6
    Senior Member ~Lin's Avatar
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    Its more painful for me to remove the catheter than insert as well. And a bit tmi, but similarly its more painful to remove a tampon than insert one... I have issues with spasms in my pelvic area, and things like that trigger the spasms so I wonder if you might be triggering spasms in your bladder or around your bladder while removing the catheter. Urodynamics should definitely help find out whats going on so thats good.

    What kind of catheters do you use? I've also found that the type of catheter makes a big difference for me, but then my base issues are very different. But I've found hydrophillic catheters to be much less painful for me to use. They are the ones that usually come with a package off sterile water (or maybe saline?) inside that you pop, and the catheter absorbs some of it and thats the lubrication, no gel needed to apply. I also recently found out through this forum that you can get whats called urojet which are single use lidocaine gel things with a tip to apply straight into your urethra. I recently had kidney stone surgery and really wished I had known about them before because it felt like my urethra was shredded after. But I wonder if that might help you out, at least until you get more answers or maybe until your body gets used to cathing. Maybe bring it up with your urologist? Because its really important to make sure your getting your bladder all the way empty, you don't want to add UTIs on top of everything else you're dealing with right now.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  7. #7
    I use the kind that is prelubricated in a package. I can't feel the urethra, at least on the outside, and I am not sure what I am feeling that hurts inside, but I would love to give ladocane a try. Maybe I am having bladder spasms. That would explain the abdominal pain I feel sometimes. Maybe I could take a muscle relaxer a while before cathing?
    Even my teenage son ran across the cauda equina information and said, "Oh my God, Mom! That's you!" Give that I have metal work through that area, I don't think they are going to do surgery to decompress the area.
    I have had a lot of pats on the back with a vague, "It will get better" type encouragement. Is that what I should focus on, like it will just go away in another month or two, or would my emotional energy be better spent recognizing that I can adapt and that this may be perminant? Also, my partner keeps waiting for me to get better. Should I let her know that it may be perminant?
    What professional deals with this? A neurologist?

  8. #8
    Weird. A mosquito bit the inside upper part of my right foot. It doesn't itch a bit. ???

  9. #9
    Senior Member ~Lin's Avatar
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    a regular muscle relaxer won't work on bladder spasms I don't believe. It could help if you are having any of the type of spasms like I have but like I said my base issues are way different from yours. If you are having bladder spasms there are specific medications that can help, like oxybutynin. You can discuss trying them with your Urologist. In my experience they hand them out rather easily, I was given a months worth of samples the first time I ever saw a urologist despite it not being what my issue was at all and so they didn't help me at all. You can try calling and ask if they can call you in a script for a bladder spasm medication and the urojet or lidocaine gelly to dip the catheters in to see if that helps.

    As for what Dr you need to see I would guess at neurologist, and also a physical medicine and rehabilitation Dr. But hopefully one of the nurses comes back or someone that knows much more than me to help you with that.

    If you do have cauda equina, then yes you're probably going to have some permanent issues. So if I were you I would sit down and have a serious conversation about permanent symptoms, long term recovery/rehabilitation, etc with your partner. Nerve damage is often permanent, but peripheral nerves can also heal over time. Determining exactly what your injury is will help the Drs tell you what may be permanent. And you may slowly experience recovery over years.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  10. #10
    Thanks for taking the time to share your experience and for the suggestions. I now have a referral to a neurologist and an appointment with the rehab doctor who treated me while I was inpatient. It may be kind of strange to feel better hearing that this may be a specific disorder that may well be perminant. But it feels more realistic than the vageue, it - may - get - better pats on the back!

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