Need advice on finding good doctor/physician

[theRobot]

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.

[titaniumed]

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

[Pooka1]

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.

[titaniumed]

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

[Pooka1]

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. :-)

[theRobot]

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.

[Pooka1]

I think many, if not most, forms of PT can temporarily correct a curve to at least a small extent. Even just standing differently can make a curve look smaller.

The problem is there are no long-term studies showing you can ever stop doing the PT and retain the correction. If you are willing to exercise your whole life you might be able to maintain the correction or maybe stop progression. Nobody has shown that can happen but that doesn't mean it isn't possible. It might be possible but it is hard to find people who do PT forever and never get sick or anything.

One person who has done PT for many years continuously is Martha Hawes. She is a plant pathologist who has booted herself up in scoliosis. She documents her case over the years with serial radiographs. She has demonstrated long-term curve reduction but she does a lot of PT, at times several hours every single day. She did not do anything scoliosis-specific.

There also a yoga instructor who has avoided surgery but she is doing yoga all day. As I recall, and it is not clear despite a note from her assistant, how much yoga she does a day and why only a mall percentage of it is supposedly keeping her curves in check (if that is the claim... I don't remember it very well but that is my best attempt).

Then there is Fishman, a physiatrist in NYC who claims one yoga pose has reduced all kinds of curves. He claims that only a few minutes a day is sufficient. But again, there is no long term and there were some issues with the paper. And this pose is not scoliosis-specific.

In my opinion, many forms of PT will reduce or hold a curve at least temporarily. There is no need to pay through the nose for Schroth or any chiro like Clear/Scolismart, ARC3D, etc. based on the the aforementioned papers.

[titaniumed]

Yes, we all want to avoid surgery....

Surgery can be a scary thing, and as a scoli, its something we have in the back of out minds......Some of us want it, and figure it as this thing we have to eventually get out of our way, like a checklist, but most of us are truly scared to death and put it off....If you are in an exercise or brace program and going through the steps positively, keep the surgical icon on the lower right side of your screen not opening the icon all the time. Surgery is this option that we have to be mentally prepared for since we all degenerate to an extent and that’s when the real problems start....In adults or adults over age 40, its all about pain....your scoliosis related decisions will be based on pain. Many of us have problems with our discs.

We do have muscle issues.....and they can atrophy. If you don’t use it, you will lose it. My dad had ALS so I saw this first hand. It’s a neuro related problem mostly, different brain cells die that control muscles, and knowing which ones die for any particular neuro related disease is mostly unknown science......Going into an alternative exercise or bracing program is an attempt which is fine, the science behind it can be foggy and experimental. Nothing we do has any guarantee, but it’s the best we can do for now. Many years ago, it was even more experimental, so we are fortunate to have what we have today. In the future, they will look back at us now as if we were still in the stone age. That’s if we don’t destroy our planet or ourselves first.

Exercise is important and something as simple as walking is this necessary thing we need to do......Being a couch potato doesn’t work with scoliosis. We have to keep moving just like most (not all) sharks have to. (Reef white tips don’t need to swim and they lay still on the sand during the daytime. I have laid next to them......bubbling away) After a while they get annoyed and leave. If you had someone laying next to you bubbling, you would leave also. (smiley face) I don’t know if they get osteoporosis, so I just want verify if you are a female? Osteoporosis becomes very important with female scolis as they age.....

This walking thing is so important that I will be taking a position in a huge plant that will require me to walk long distances.....This is something I am doing on purpose instead of hanging out in an office most of the time. It comes with a nice wage increase, so I figure that I will be getting paid to walk. It’s a way of getting all my alternative money back spent through the years. We are probably better of in jobs like these, since sitting is a hard thing. Outdoors would really be better, someplace scenic of course....

Where are you located?

Sharon, I just realized that I actually did a Thanksgiving without sweet potato’s......I don’t know how this could have happened? And after Dr Crystal went into a detailed explanation of the benefits of sweet potatoes with me.....It’s a major anti-inflammatory. Should add this to Jens food thread.
http://whfoods.org/genpage.php?dbid=64&tname=foodspice

Ed