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Thread: Neurofibromatosis

  1. #1

    Default Neurofibromatosis

    I just wanted to see if there was anyone else on here that has NF. I like to talk to others who go through the same stuff as I do.

  2. #2

    Default



    Quote Originally Posted by Sanddeath View Post
    I just wanted to see if there was anyone else on here that has NF. I like to talk to others who go through the same stuff as I do.
    Noisy Farts? Yes, on occasion.

    When this happens to me, it can be embarrassing. :/

  3. #3
    BLMProductions

    Default

    I'm sorry, what is NF

  4. #4

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    Nerofibromatosis. Here is a site that explains it Neurofibromatosis

    But Basically, it create benign tumors(neruofibromas) on the nerves of the body. I have type 1 NF. I have had four surgeries, one resulted in wearing an awful halo brace for a while. I have also lost most of my movement in my right foot due to a back surgery. I call it my dead foot. But yeah, it's not terrible, but not great either. I need bi yearly MRI scans in Houston.

  5. #5

    Default

    I had a benign tumor removed from the nerves in my spinal column. I was becoming paralyzed from the waste down. I think it was a random tumor rather than what you have. The operation was done by a brain surgeon and other doctors looked on. I was told I had a 50 percent chance of walking. He cut a key way into my spine and peeled the tumor like a grape, leaving the nerves in tact. I am grateful that he was my surgeon. My recovery took several months and I had to catheterize myself for more than a month. I hope I never have to go through something like that again.

  6. #6

    Default

    Oh yeah. The self catherizing. That was something I tried to forget.

  7. #7

    Default



    Quote Originally Posted by Sanddeath View Post
    Nerofibromatosis. Here is a site that explains it Neurofibromatosis

    But Basically, it create benign tumors(neruofibromas) on the nerves of the body. I have type 1 NF. I have had four surgeries, one resulted in wearing an awful halo brace for a while. I have also lost most of my movement in my right foot due to a back surgery. I call it my dead foot. But yeah, it's not terrible, but not great either. I need bi yearly MRI scans in Houston.
    Ah! I haven't been diagnosed with this particular NF.

    The page you supplied makes it sounds like it's N.O.S. ("Not Otherwise Specified"), as it may cause this, and may cause that, and does weird skin-stuff (cafe au lait) too. Seems like it can range from spots to leaving its sufferers paralyzed, which is a huge spread.

    Hopefully your experience with it ends here and your bi-annual MRI scans keep coming back clear.



    Quote Originally Posted by dogboy View Post
    I had a benign tumor removed from the nerves in my spinal column. I was becoming paralyzed from the waste down. I think it was a random tumor rather than what you have. The operation was done by a brain surgeon and other doctors looked on. I was told I had a 50 percent chance of walking. He cut a key way into my spine and peeled the tumor like a grape, leaving the nerves in tact. I am grateful that he was my surgeon. My recovery took several months and I had to catheterize myself for more than a month. I hope I never have to go through something like that again.
    Um. Damn. I'm glad that you're up and moving and with us, dogboy.

  8. #8

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    Yeah, I have NF :P

    There's possibly 1 other (that I know of), maybe more. Who knows.

    Note: I should add that I have type 1, and am beginning to experience some "possible" complications. However, there are challenges with seeing doctors about it.

  9. #9

    Default

    I am sorry your dealing with that I was tested for it and it cam back negative luckily, they test me because I was having random black outs, later found to be hyperactive nerve in my neck.
    Don't give up hope though you can get through this.

  10. #10

    Default



    Quote Originally Posted by h3g3l View Post
    Ah! I haven't been diagnosed with this particular NF.

    The page you supplied makes it sounds like it's N.O.S. ("Not Otherwise Specified"), as it may cause this, and may cause that, and does weird skin-stuff (cafe au lait) too. Seems like it can range from spots to leaving its sufferers paralyzed, which is a huge spread.

    Hopefully your experience with it ends here and your bi-annual MRI scans keep coming back clear.


    Um. Damn. I'm glad that you're up and moving and with us, dogboy.
    Haha....clever connection to my messages. Yes, I'm glad I'm up and around. I was out riding on the bike trail today. I never take mobility for granted.

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