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  1. Thread: Do overs

    by Skye83
    Replies
    11
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    8,158

    Hi, David! Actually, I am much worse, esp with...

    Hi, David! Actually, I am much worse, esp with issues ABOVE the level of injury. I don't want to hijack this wonderful thread with all that. I want to try and update my situation on a Word doc.,...
  2. Thread: Do overs

    by Skye83
    Replies
    11
    Views
    8,158

    Oh dej, I just had to delurk. Giggling about...

    Oh dej, I just had to delurk. Giggling about your radiology speak....my 1st post ependymoma resection MRI...wait for it...the cord is now small....

    Tapped on my Kindle....
  3. Thread: Attn:David Berg

    by Skye83
    Replies
    0
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    1,143

    Attn:David Berg

    I can't use your homepage at painonline.org. When I click on any link on your page, I'm redirected to Google homepage telling me "to reactivate your website, click here."

    Can you help? TIA
  4. Replies
    1,054
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    318,413

    My life still reflects the "elephant in the room"...

    My life still reflects the "elephant in the room" dynamic. I have such vivid and unpleasant memories of my childhood. My dad would come home drunk on a Saturday night, beat my mother and I would...
  5. Replies
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    6,185

    I listen to the song "The Perfect Fan" by the...

    I listen to the song "The Perfect Fan" by the Backstreet Boys. My 35-yr-old son put it on the computer for me and I have it on my iPod. When I feel like throwing in the towel, the song reminds me...
  6. Oh, arndog, your post really tugged at my heart. ...

    Oh, arndog, your post really tugged at my heart. I have so much to say on this subject and will come back eventually to post more. I'm 56 and am entering year 11 of CP, still married. My heart...
  7. Replies
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    1,887

    Thank you for the 6 "affirmations"

    dejerine, the lack of social support, including family, has led me down the dark path of giving up many times. (thoughts of giving up, not the actual act, yet) I'm dealing now with what I think may...
  8. Thank you for posting your paper, Dr. Young. I...

    Thank you for posting your paper, Dr. Young. I didn't know you had a website for your collection of posts and will visit it more often. I wasn't aware of the memantine studies and also didn't know...
  9. Replies
    13
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    3,716

    Anger, activism and aloneness

    I am dealing with very debilitating pseudocramp (the very word does not do justice to the pain) bilaterally from waist to toes. I have absolutely no one who is even attempting to understand or at...
  10. Replies
    26
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    8,572

    Poll: Doh! My sci wasn't acute....

    Well, they say chronic pain shrinks the brain. :o My tumor was very slow growing and even though it was within the central canal of a very swollen cord, I had very little in the way of...
  11. Replies
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    8,572

    Poll: Wise:My intramedullary T8-10 tumor (ependymoma)...

    Wise:My intramedullary T8-10 tumor (ependymoma) was discovered in Nov 1997, wholly occupying the spinal cord at that level, as well as C7-T11 syrinx. I had no pain of any kind. I was started on...
  12. Replies
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    I started having pain 3-4 months after having a...

    I started having pain 3-4 months after having a spinal cord tumor resected in Dec 1997. It's all been downhill from there. None of my doctors believe that I'm worsening, including pain management. ...
  13. Replies
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    1,587

    gadolinium, NSF and me

    Well, I just composed a rather long post, tried to preview it and was told to log in. I had already logged in. Then somehow, my post was lost. I'm in too much agony to start again. Let my say...
  14. Thread: How?

    by Skye83
    Replies
    20
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    3,900

    :hahaha: I'm glad to see you have a sense of...

    :hahaha: I'm glad to see you have a sense of humor. It makes me think of the Jim Carrey "Riddler" in the Val Kilmer "Batman" movie. The question marks all over the place...kind of epitomizes...
  15. Thread: How?

    by Skye83
    Replies
    20
    Views
    3,900

    Thanks, Alan. That url is perfect! I'm calling...

    Thanks, Alan. That url is perfect! I'm calling the pain doc tomorrow-there is something really wrong with my mind-I feel so confused and lethargic. It might be the 225 Lyrica. I'm also daytime...
  16. Thread: How?

    by Skye83
    Replies
    20
    Views
    3,900

    Well. I typed out a reply to Marcia and promptly...

    Well. I typed out a reply to Marcia and promptly lost it somehow. I see I replied to myself! I'm not myself. I'm tired and feel confused. At any rate, thanks Marcia. I have an appt next month...
  17. Thread: How?

    by Skye83
    Replies
    20
    Views
    3,900

    I want to apologize for inserting so much of my...

    I want to apologize for inserting so much of my current story in Alan's thread. It wasn't until the following morning I realized my gaffe of Internet manners. I should have started my own thread. ...
  18. Thread: How?

    by Skye83
    Replies
    20
    Views
    3,900

    Hello, Alan and cc folks. I rarely use the...

    Hello, Alan and cc folks. I rarely use the computer these days due to central and orthopedic pains. I'm currently trying Lyrica, too and am working my way up to 600mg daily. I'm only taking 150mg...
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    Firesmurf (Marcia) Welcome to the unique...

    Firesmurf (Marcia) Welcome to the unique intramedullary SCT society! I knew ependymomas and astrocytomas were the most common, tho intramedullary tumors are rare in themselves. Cavernomas are even...
  20. Replies
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    Hi, David! It's nice to "see" you, too. Thanks...

    Hi, David! It's nice to "see" you, too. Thanks for your reply. As much as I try to keep telling myself I don't need validation about my worsening pain, it would seem I still have a thin skin when...
  21. Replies
    8
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    4,045

    Worsening central pain-real or perceived?

    Hello, friends. I have not been able to post very much due to my severe pain, but I have got to ask for your help. This past year, my pain management doctor has told me in so many words, that...
  22. I have very severe CP from waist down,...

    I have very severe CP from waist down, particularly squeezing pressure. I take 3x daily 400mg gabapentin (Neurontin) and 20mg baclofen tablets. While I can't say I feel spectacular relief, I have...
  23. Replies
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    3,351

    Alan, I'm glad you found this and took the time...

    Alan, I'm glad you found this and took the time to post it. I printed it out, but I'll have to be very selective about who I think would even take the time to read it.

    btw, your sig puts a...
  24. Replies
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    1,830

    Alan-I like the pain scale you quoted. I'm at a...

    Alan-I like the pain scale you quoted. I'm at a 10 on that one. I'm looking into getting a wig because I'm simply in too much pain to style my hair. I stop short at having eye makeup tatooed on!
    ...
  25. Replies
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    dejerine-Karen's email addy is on her website. ...

    dejerine-Karen's email addy is on her website.

    info@musickscapes.com

    This is her address for inquiries into purchases or comments.
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