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Thread: Advice tips and tricks for 1st timers? +Anyone have experience with Dr Beederman?

  1. #16
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    Sep 2003
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    Quote Originally Posted by titaniumed View Post
    Attending a local scoliosis meeting is a good thing.
    Unfortunately, there are very few (physical) scoliosis support groups left, at least here in the U.S.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  2. #17
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    Quote Originally Posted by LindaRacine View Post
    Unfortunately, there are very few (physical) scoliosis support groups left, at least here in the U.S.
    Hmmm.....I wonder what happened? You had quite a list of meetings years ago on your old site.

    Well, as far as I am concerned, the meetings you arranged at UCSF years ago couldn't have been any better....Everyone there was just fantastic! Since you are not there anymore, someone else at the scoliosis dept should initiate something....Also with more frequency.....perhaps every month, each doctor can pick each meeting and subject matter. I am guessing there were around 150-200 people at each meeting? The logistics needs a lot of thought.....All the major scoliosis centers should think about this. Perhaps a National program? Your going to absorb much more interacting personally, than online.

    I will admit, some things you never forget. At one of the Sutter meetings in Sacramento, a lady was crying (melting down) on my shoulder since she was rejected for her osteoporosis....Its why I think and know that there are many surgical candidates that REALLY need surgery that are scared and keep putting it off. I was one of those and did just that over 34 years.....If it wasn't for the high levels of pain, I guess it wouldn't have happened. I also had the time frame thing on my mind, I knew that in my situation that I was running out of time, things were only going to get harder if I waited.

    Scoliosis is an incredibly complex disease....with many or most treatments that are so time sensitive. Its all about timing, knowing how to control pain and emotions over a lifetime......Its never as simple as, just wear this brace, or just do yoga, or just do a physical therapy program because we change so much through the years. Alternative options, then surgical options. New technology also changes things...

    Its quite a learning curve! It takes a long time to understand whats happening and what will happen to our bodies as time passes....

    And we are all so different but so similar....

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #18
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    Ed....

    Most support group leaders will tell you that attendance was a problem. For my group, I typically had the same 6-8 people each month, plus maybe one or two new or occasional attendees. A lot of the speakers felt there wasn't enough of an audience, and wouldn't commit to coming back in the future. And, as a support group leader, I can tell you that while it was always nice to see my scoli friends at each meeting, it truly wasn't worth the effort of trying to find locations and chase down a speaker each month. I remember being very embarrassed when, after almost stalking Dr. Bradford for months, to come back and speak to the SF group, he finally agreed. We had like 7 attendees. I was pretty embarrassed.

    When the internet came along, the need for physical meetings dwindled drastically.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  4. #19
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    The smallest group I attended was when Dr Benson spoke in Sacramento....You were there... 40-50 people?

    That had to be quite a letdown when you had Dr Bradford lined up. That is such a shame..... I would have just passed out and fallen on the floor....

    When was your first meeting? Was it in San Francisco?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #20
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
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    I think the largest meeting I attended was probably about 15-20 people. I can't remember ever attending one with 40 people. I think the big half day meeting I held at UCSF (that took months of planning) with free lunch, and a dozen speakers, only drew about 35 people.

    My first meeting was in SF, probably around 1991. I didn't start leading the group until many years later.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  6. #21
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,024
    I guess my eyesight is going bad, I am seeing triple these days.....(smiley face)

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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