monk chanan's story

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     I'm 59. I first injured myself when just 22 by
    lifting weights, suffering disc degeneration.

    At 25, in 1982 I had an Anterior Fusion of
    L2-L3, with Harrington Rods screwed into
    the vertebrae and wired together. Only
    lately have I studied how such as these
    frontal fusions have a 40% failure rate.
    I would not have had it done if I had known
    this as a young man. Afterwards, I suffered
    shooting pains and pins & needles often
    to my whole thoracic region, often when in
    hot temperatures. My skin as well developed
    dimples and blood pimples often in that area.

    Mobility was soon becoming harder, so after
    a year later I consulted another orthopaedic
    surgeon (first fusion in Toronto, second in
    Vancouver). After his examination, he thought
    that the first fusion might have been too low,
    but he thought therefore that a rear fusion
    from L1-L2 would relieve my symptoms. For
    several months before it, I couldn't sit for
    longer than the time it takes to eat a meal.

    Just after this far easier and shorter fusion,
    a nurse moved my legs only, to turn me, but
    just after the operation. It hurt & I was afraid
    it might have affected the success of things.
    My concern seemed justified by my symptoms
    not improving and a tomography report stated
    6 months later that the fusion did not "fuse."

    So for the next 3 years, I still could only sit
    for about a half hour at any one time, when
    the "compression" pain or strain got so great
    I had to lie down. My wife admired my pain
    tolerance but she couldn't take everything &
    me suffering so much: she decided to leave.

    I had returned to Calgary by then to see if
    at my home turf I could get better assistance.
    It was 1986, and just prior to my wife separating,
    I had made it to the Mayo Clinic, that so early on
    in Medicine diagnosed RSD - I didn't know what
    it was, nor did I want to find out more about its
    nerve damage. Later, my Doctor in Calgary said
    that I had received a lesion to my Sympathetic
    Nerves.

    Things were looking grim when I received a
    letter from St Mother Teresa, who was praying
    for me. The same week, one day I could sit again.

    I then had 20 really good years of a relatively
    normal life, except I couldn't convince my wife to
    return, even though we had been "soul mates"
    forever. I then however got my teaching degree
    (first one was Stanford '81 in Poli Sci) from the
    U. of Calgary. And physically I was resolute, with
    up to an hour or more work-out at the Sports Plex
    every other day.

    But 6 or 7 years ago, I just too non-chalantly or
    unwarying deep bended, and the burning Causalgia
    pain returned that I had, for several months back
    in 1987-88, before St Mother Teresa wrote me.
    Nor did it "let up" within days, nor weeks, nor these
    6 or 7 years. It is like being on fire literally, to large
    sections of my body. I started getting wild temperature
    and sensory changes, parathesias even, the loss
    of all my leg hair, my toe nails pointing upwards,
    profuse sweating between my legs, edema, and the
    buckling of my skin and periodic ulceration of mostly
    my right leg, and gradually my circulation was affected,
    and when i walked too far, that evening or next day
    the constant burning, like a burning blanket to most
    of my mid-section, and gradually higher & higher in
    its scope until my arms and even up into my face
    would get this "heat up" and "burn." - a monster!

    I had an MRI in the early stages, but the Radiologist
    couldn't find anything other than further disc degeneration
    lower than where I had been fused. It was two -triple-phased
    bone scans years earlier where they diagnosed RSD, due
    to differences in the two legs' blood flow. Then however
    a new densitometer diagnosed, in addition, osteo-arthritis,
    which at my relatively young age is often associated with
    CRPS. As I studied with my Calgary GP, I recognized
    though that my Causalgia burning was more of the CRPS
    II pathology. So we devised a medicine regime which was
    similar to Dr Overlander at Harvard - Nortriptylene, Pregabalin,
    Oxycodone, and Paxil, with periodic Bachlofen. I also get
    a little more relief if I take an antihistamine. Each medicine
    by themselves doesn't cover the huge burning, but together
    it gets some of the 'bonding effect' I need to withstand it,
    but my pain level is "off the charts," and after 6 years slowly
    worsening. I need help! I also get angina if i walk too far,
    plus if I do walk more than a score of yards a day, the pain
    that evening or the next day is that much worse, even though
    I have to master a set of stairs to get my meals every time.

    I tried a chiropractor who said he specialized in nerve damage,
    who seemed to take just normal spinal ex-rays. He showed on
    the wall where my spine has developed a bend he was very
    grave about, where the "fulcrum" is right where I'm fused!
    In effect, he said, a scoliosis has developed where my upper
    body is "crushing" the nerves around where I am fused.

    Life has become unmanageable. I'm getting the angina
    pains on a more "unstable' basis of time or exertion, and it
    feels my days are numbered, yet I haven't died yet - i just
    suffer a critical level of pain that exceeds my medicine's
    ability to meet. I wish to try something new like ketamine
    or memantine, but my local doctors don't like to alter my
    regime they have said, & ketamine isn't done in Calgary.