Conversation Between northpond and LMG

8 Visitor Messages

  1. Not too bad. I move a little better and getting stronger, but still have a long recovery. Some things are not impoving at all. The tone in right foot is severe. No way to make the "gas pedal" move. Still need an AFO brace. However, I can move faster and walk longer distances. Balance is better, and I can peform basic tasks a little easier. I need to excercise more and be more disciplined. Gaining weight! and don't like it. I did get my car fit with hand controls and now I can drive. Nice.

    How about you? I don't recall or see any notes - curious to know how you get around? Cane?? Thanks for the follow up.
  2. How are you doing?
  3. Thanks for your input, and you have been helpful. i think fellow patients can be more helpful than some doctors!! yes, I need to be patient and stick to my PT therapy. At times I feel like it is futile, but then I just keep moving. I try to spend as much time as I can doing normal things, like yardwork, simple home repairs and going to stores. It keeps me feel a little more normal than just excercising. Stay in touch and thanks for listening.
  4. I just want to say that you will probably experience more improvement as time goes on. It is still early in your recovery. This time next year you will not be as you are now. Your whole body, including brain, is trying to adjust to the assault it has experienced. As it adjusts and changes your medications will probably change, too. Hang on. It does get better.
  5. First of all, My mini statistics are incorrect: I am 58 years old. My surgery was back in 1977. I was initially paralyzed from the chest down, but that improved to below the belly button. My condition improved over a two year period. Or so before stabilizing.

    My legs were different too. One had more spasticity than the other and was more difficult to bend. I relied on that spasticity to walk (albeit with crutches). I had to look down to walk because of proprioception issues.

    I do not remember what meds I took back then, but they are probably obsolete now!
    I do remember how hard it was to adjust to a new way of being.

    I feel I have been no help at all, but I am here to support you as you go through this, and answer any questions or concerns you might have as best I can. I remember there being a website for people who have/had ependymoma. Have you found it and if so, was it helpful? Please keep in touch and let me know how you are doing.
  6. Thanks. I m one year past surgery. I have loss of propiroception on the right side, minimal motor skill and balance on the right, and the right side is also very stiff and tight. I can barely bend at the knee. But I haev pain and temp.

    the left side is the exact opposite. I have strength, good motor skill, but there is no pain and temp sensation. this is known as brown sequard.

    From the chest down, I have terrible sensations of stiffness, numbness and a sensation of "bloating" It all feels real bad.

    How far past surgery are you?? Do you have stiffness? Are you taking meds at all? I am having a hard time adjusting and getting back to normal I know I am in for the long haul. Any suggestions you have or anything you wantto share would help. I know I am not alone, and it seems like there may not be much they can do..
  7. Northpond, I posted return message on my own page (still learning how to navigate the site). Please tale a look there. Also, how are you doing and what is your situation now?
  8. I saw a post where you mentioned you had an ependymoma removed from thoracic region. Me too had the tumor removed last year, from thoracic t5-t7. Did any symptoms remain? Did any nerve damage remain?
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