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  1. #1
    Join Date
    Jul 2013
    Posts
    3

    Need advice on finding good doctor/physician

    So I'm 35 years old. I was diagnosed with scoliosis in middle school with the exams. Interaction with doctors was brief because I was not aware of symptoms, nor did I notice any change in my body. I remember the doctor describing the angles and saying if there's no pain we can leave it alone.

    After about 23 24 I began to realize my scoliosis was definitely noticeable. So I briefly saw doctors again, but was discouraged because I felt they had a very sort of "sorry we cant do anything, hurry up and leave now" attitude about it. I thought that it was common knowledge that regular x-rays should be done. But neither my main doctor nor the back specialist mentioned it on their own, and only very casually agreed they could do it when I asked for it done. After that I spent the years in between trying to do things on my own to check on myself and prevent the possibility of my back eventually getting worse.

    I am not happy to do that anymore. I am constantly worried I'm seeing my angles get a little bit further, though slowly over the course of the years. It causes me a lot of stress and worry about the future, and at the same time, there is always a level a pain hovering there that I deal with and have to be careful with.

    So I want to find good help. I dont expect the first doctor I talk to to have heard of schroth or any of the viable studies starting to pop up, but i do feel i should expect one to recommend x-rays without me having to ask about it myself. Is that expecting too much? I have had 3 x-rays total since I was diagnosed.

    As a kid, I remember doctors taking a more proactive approach to my health and body, as if they were trained to get information from me about problems i might not yet know are there. It seems if I tell a new doctor I have scoliosis, then thinking along those same lines, he would immediately look for x-rays. Am I wrong? Is that not typical? I don't want to waste time pursuing treatment along with a line of so called professionals who don't approach it correctly. I just wonder if I'm asking for too much.

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Chances are you will start with a GP........Tell them you were diagnosed with scoliosis years ago and they will take a look, do an Adams bend test, and either shoot an x-ray or not, but should refer you to either a regular orthopedic or a scoliosis specialist. Insist on a “Scoliosis Specialist” and take it from there.....Scoliosis specialists are orthopedics that do residencies and maybe fellowships at scoliosis training centers like UCSF, HSS, TCSC, etc....These specialists are trained to look and find things that the others will miss. Its important to visit a scoliosis specialists to rule out things like Spinal tumors, Hemi vertebrae, or any other complicated spinal matters....

    Just because you go in doesn’t mean your doing surgery, and no surgeon should ever push anyone into surgery. Surgical parameters are usually around 40-50 degree Cobb’s, if not that large, they should recommend some sort of PT or non-invasive treatment. There are some great ways of maintaining scoliosis these days. Always try to think positive, not negative. There will be an effort involved, and spine mobility is something that I do miss, and is worth trying to keep. I have adapted to full fusion, but preserving mobility is worth the effort.....

    As a scoli, you should know your Cobb angles, and obtain your own dated copies burned to disc for the future. Your scoliosis surgeon will do the measurements.....

    Some links to check out....

    http://www.srs.org/

    http://www.srs.org/find/disclaimer.php

    http://srs.execinc.com/edibo/PublicDirectory

    Its always nice to find a scoliosis surgeon in your home state because insurance can get complicated if you do travel to another state. They used to only cover 50% if you left your home state, so this can be an important thing to consider since nothing having to do with scoliosis is cheap other than maybe a 24” exercise ball. (smiley face)

    Welcome to the forum.....

    Ask any questions you want....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    theRobot, Titanium Ed gave great advice to you. Great and very complete. He is one of the spokesmodels on the forum. :-)

    I just want to reiterate that it is so important to follow your case with radiographs over time. One reason is there are some large curves that don't progress. If there isn't a lot of pain, those are not necessarily surgical. So if you have a large curve, it may not be progressing or progressing fast enough to matter so you should not assume you are a surgical case. I just wanted to add that. An experienced board-certified orthopedic surgeon specializing in scoliosis will tell you this. If your curve is not progressing and you have pain, PT has a good chance of being a better solution than surgery. And I am not aware that scoliosis-specific PT like Schroth is any better than regular PT. Ask the surgeon what the evidence case is. You don't have to pay more than you have to, especially since some insurance doesn't cover Schroth (due to lack of evidence of efficacy presumably).

    Good luck.
    Last edited by Pooka1; 11-27-2015 at 06:33 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Thanks Sharon....I try to be complete but worry about missing important points these days because my memory is starting to go and its driving me crazy....

    On a side note I wanted to add that one of the newer things out there is the 3D Printing of scoliosis braces.....Don’t know if it works but it’s a method that has a high level of “accuracy” in the manufacturing end of bracing. Now if we can only come up with a way of measuring the spine without x-ray radiation, that would be the cats meow. I’m thinking like Theranos and the way they have progressed in (immediate) blood testing, a critical tool in fighting cancer.....Good ideas are always worth mentioning.....

    I have always believed that the fight to avoid surgery is worth the time and effort....

    Its great when new members pop in here and sit at the table.....

    I have to look up some of David Allen Grier’s tofu turkey jokes before I leave for Thanksgiving.......I’m not advising tofu turkey or scoliosis braces, these are just things to know about in our world. (smiley face)

    Happy Thanksgiving!

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,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. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Three-D printing of braces sounds like an excellent application of that technology.

    As a baby step towards a kinder future, instead of having a tofu turkey, you can search out humanely raised birds. That's what my husband and daughters had in addition the rest of the meal which was entirely vegan. I am vegan so I had everything except the turkey... vegan roasted vegetable "quiche", sweet potatoes, vegan stuffing, cranberry sauce. There was even vegan apple pie that I bet few would have known was vegan.

    Happy Thanksgiving to you, Ed and everyone on the group. :-)
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #6
    Join Date
    Jul 2013
    Posts
    3
    Thanks for all the advice everyone. I'm glad this place exists.

    I definitely want to avoid surgery. However, I have read that there are a lot of things affected by scoliosis including muscular atrophy. I am not accustomed to being unable to do physical work. So I hope to talk to someone who can kind of help me predict the future in that regard. If surgery is viable for preventing that I would be considering it more.

    Regarding PT methods that can actually partially correct curves, I have read a few studies on here, one in particular out of Italy I think, very recent, that has shown it is doable. I get the impression these kinds of things come to America last, unfortunately. But if anyone out there is trying it, I'd like to find them.

    I will be asking for a scoliosis specialist. I guess I thought it would have been suggested earlier. Thanks for the idea.

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