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after long absence, need to ask questions

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  • after long absence, need to ask questions

    Hi everyone, I apologize that I have not been following any post for several months. I tried to stick my head in the sand, but it's not working. I am almost 60 & have been in pain for 25+ yrs. After being told I am a salvage patient & need revision surgery I just don't know if I have what it takes to face another surgery. Escpecially this one as it seems a make it or break it deal. Anyway I have a couple of questions I hope someone will be able to help me with. As I said I have lived with severe chronic pain for 25+ yrs due to scolio related issues. Then about 10 yrs ago the pain graduated to intractable pain & is simply unbearable. I am on high dosages of meds for which I am very grateful, but at the same time feel uncomfortable because so many dr's & society seem to feel it is an awful thing to do. Let me tell you, after being on them for so many yrs, my personality has not changed, my decision making skills have not changed, they only help to reduce the pain a GREAT DEAL. That said, the pain is still so bad that it rules my life. I have been house-bound for many yrs. Does anyone else deal with this kind of pain. Do you find it hard to find a pain dr to take care of you. I live in NW FL. My last dr was arrested back during the holidays & now I have to drive 9 hrs ea. way to see a dr, pay motel, gas, meals, the dr, etc. This just is not in our budget & is brutal on me. Does anyone know how to search for a dr close to home (between Pensacola & Panama City Fl) Would gladly drive 3 to 4 hrs such as to Tallahassee, etc. Then we could make it in a day. My other question is does anyone else have problems with the disk that hook the head to the neck. My problems go from the 1st disk in the neck all the way down to the bottom of my spine. I have pseudoarthrosis betweeen my shoulder blades. I have a new pain that I am TERRIBLY worried about: The rib bones under my arm pit along side the breast on the right side (have always had pain under that shoulder blade due to the neck) has become very painful. Has anyone else experienced anyting like this? I sure would appreciate any feed-back. The pseudo between the shoulder's has gotten worse & the rib bone pain under my arm seems to have developed about the same time that the pseudo began to get worse (not sure related).
    scoli appeared age 15
    untreated until age 30
    41* T & 72* L
    Harrington Rod T4 to L4
    33* T & 53* L
    neck instrumentation C3-4,C4-5,C6-7
    Revision coming up in Nov. 2012

  • #2
    Taylor,

    I am sorry you are dealing with so much pain! It sounds like a whole lot to deal with.

    Are there any good revision specialists in your area? Maybe Linda could recommend one? Anyway, I would think your ortho would prescribe your pain meds so you don't have to travel so far for a pain specialist.

    Hope you begin to feel better!

    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

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