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Thread: do i need a brace?

  1. #16
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    "not a doctor of any kind"

    Gruvin:

    I think this quote of your recent post sums up your interest and knowledge about scoliosis: $$$"I am not a doctor of any kind but I do have a close relationship with the medical community(medical billing and office administration consulting)"$$$.

    I have extensive medical background and I found your suggested site too confusing-almost ridiculous.

    If indeed you have a great alternative treatment you need to set up a proper, controlled study following accepted principles.This includes informed consent with possible risks vs benefits and free treatment; study subjects do not pay for the experimental treatment but are frequently offered a stipend. Everything needs to be documented in the study including a control study group. The subjects need to be followed up for years to see whether any curve improvement is maintained. Then you must publish these results in peer reviewed journals for the world to benefit. Also your results must be replicated in other studies by other researchers and published for scrutiny.
    This is the way the scientific community works; this also holds true for studies of alternative therapies.

    Are you willing to do this?

    I personally would not have lived this long had I not had an earlier form of un-instrumented scoliosis surgery. Later in life I neded a revision. So what! I got my life back. I am still working, productively and pain free.

    Karen Ocker
    Last edited by Karen Ocker; 05-20-2005 at 10:46 AM.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  2. #17
    Join Date
    May 2005
    Posts
    12

    lesson learned

    Karen, I apolize for not posting a link to a medically oriented site. The last link I provided is to the US patent office on a patented specific alternative technique. Understanding the technique in the way it is written is hard(cutting & psting it out into a flow chart would make it more understandable but time intensive) but the information on their study was listed at the bottom.

    As for the site being ridiculus, thats the way the US government likes it! Blame them...

    Where did I mention this was a study that I was soliciting people for or that money was to exchanged for treatment as well as the results were to be publish?

    Frankly I am quite insulted that you insinuate that I am only here profiteering without knowing the extent of what I have been through in my own experiences and whether I am associated with these people I have listed in any way. I DO NOT work for any of the medical professionals I have listed in any post on this site. (My expertise is in creating a functional patient friendly office. Patient surveys show the most satisfaction comes from those offices who are patient friendly. Patients hate that stupid sliding glass window!)

    Why do I need to set up a study, its not my technique. Obviously I could not participate in the study anyway #1 as Linda pointed out I am not a risk factor so I dont need care(sounds like an ins company using a guideline booklet to tell a doctor who saw a patient that care is not necessary! You would be upset if that was your ins company, especially if it relieved the condition you had) and #2 my scoliotic curves have already been minimized.

    This is the Cirriculum Vita on Dr. Woggon...
    http://www.jvsr.com/authors/index.asp?ID=535
    This doctor designed the treatments that my doctor used with me. Very time and energy intensive on my part but I can not argue with the results.

    As I listed before, I will be posting my own results, thats what I know about scoliosis! I think its quite pretentious of you to stereotype me based on a couple sentences which were extracted from several hundred words written by me of the course of the last couple of days. My father, mother, my only brother, sister-n-law, current girlfriend and I are ALL scoiosis patients. We all had or had a forward head posture before treatment(will post my pics of my imbalanced shoulders and forward head posture which are now basicly non-existant). Someof us are doing better than others due to a number of things including the big one of patient compliance with care plan.

    Finally, Olivia, the topic starter did clearly ask for any and all alternatives as she did not want to wear the brace (or have surgery) if avoidable. It seems that any alternative offered is shuned or scorned.

    Of the scoliosis forums I have visited, this is the only one that I have been so violently opposed in being allowed to give people info that they can review with an open mind then make a choice of accept, deny, or ask for more information. Several people on other sites have been interested in at least reviewing the information and some are even undergoing care already and seeing results. I guess thats the biggest flaw in this forum is there is nobody else here to support an alternative viewpoint. Everyone agrees that surgery is the last resort but seemly refuse to acknowledge even the POSSIBILITY of anything else.

    How many of you still believe that 4 is the only answer to 2 + 2...?

  3. #18
    Mary Lou Guest
    grunin,

    None of us on this forum are dead set against trying something new. For me, we tried everything that was offered to us. When you are a parent and you've tried everything possible, and your child's curves continue to progress (about 1-2* per month) even though skeletally mature, you have no other choice but 1) surgery to stop the progression or 2) let the curves progress to the point that her lung and heart become affected. There was no other choice for us. May I ask how old you are, at what age were you when diagnosed and at the worst, what degree was your Scoliosis? I'd be curious as to have the same questions answered about your other family members who have Scoliosis. Age at time of diagnosis, degree of curvature at diagnosis and skeletal maturity all play a part in all types of Scoliosis treatment. Also, this therapy/treatment that you've gone through, does it work for Kyphosis as well as Scoliosis? I would be very interested in seeing your before and after treatment pictures.

    Mary Lou

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