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zephy
11-22-2011, 08:13 PM
Hi everyone. I am a new poster here. I am a person in 20s, diagnosed with 'idiopathic' scoliosis during high school, approximately 30 degree deviation, managed with a brace until growth plates closed. I haven't had a follow-up in a while, which I should do eventually. But I wanted to ask what everyone here does for lower body exercises. I am planning to discuss this with a physician with reimaging of the spine to see what is happening. I was leaning towards squats and deadlifts, but those are not good for the back, so I am going to wait until I find out more. Doing a proper squat requires the lumbar spine to be in its natural curvature, but since the scoliosis prevents any natural curvature from forming, I can't say what a safe, correct squat is anymore. But just curious what other exercises are effective for everyone. Thanks!

rohrer01
11-23-2011, 02:09 AM
Welcome to the forum. I would suggest going to see a scoliosis specialist. There are a bunch listed on the SRS website so you can find one in your area. I made the mistake of not going to specialists in my 20's. As far as safe exercises go. Walking, walking, walking. Swimming is also good, as it is not stressful due to the support of the water on your body. Where is your curve? I'm assuming from your post that you have a lumbar curve? A good PT can give you exercises, but make sure that they know how to treat scoliosis. Best Wishes to you!

Pooka1
11-23-2011, 08:41 AM
Try to get copies of your radiographs from your old doctor to bring to the new one. These are incredibly valuable for determining any progression rate and other changes.

zephy
11-23-2011, 04:37 PM
Welcome to the forum. I would suggest going to see a scoliosis specialist. There are a bunch listed on the SRS website so you can find one in your area. I made the mistake of not going to specialists in my 20's. As far as safe exercises go. Walking, walking, walking. Swimming is also good, as it is not stressful due to the support of the water on your body. Where is your curve? I'm assuming from your post that you have a lumbar curve? A good PT can give you exercises, but make sure that they know how to treat scoliosis. Best Wishes to you!

Thanks for the welcoming! The primary curve is in the lumbar region, but there is also some thoracic curvature, which I guess may be due to compensation for the lumbar curve. Plus, there is also asymmetrical muscle hypertrophy, again I guess to compensate for something. Just wondering if you could talk a bit about what happened in your 20's that you thought you should have seen a specialist. I'm actually still in graduate school, so I think I will try and get old copies of back films, and then see the general physician, and see if they can reimage my back, and refer me to someone at the university's medical center.

Too bad I do not know how to swim, haha, but I do upper body exercises at the gym. I do stand and walk a lot, and occasionally running at the gym treadmill, though I'm more focused on working out than cardio.


Try to get copies of your radiographs from your old doctor to bring to the new one. These are incredibly valuable for determining any progression rate and other changes.

I agree. I'll have to see if I can get films from about 7 or so years ago.


Just wondering if anyone knew, is this considered adolescent or adult scoliosis?

rohrer01
11-23-2011, 05:18 PM
Thanks for the welcoming! The primary curve is in the lumbar region, but there is also some thoracic curvature, which I guess may be due to compensation for the lumbar curve. Plus, there is also asymmetrical muscle hypertrophy, again I guess to compensate for something. Just wondering if you could talk a bit about what happened in your 20's that you thought you should have seen a specialist. I'm actually still in graduate school, so I think I will try and get old copies of back films, and then see the general physician, and see if they can reimage my back, and refer me to someone at the university's medical center.

Too bad I do not know how to swim, haha, but I do upper body exercises at the gym. I do stand and walk a lot, and occasionally running at the gym treadmill, though I'm more focused on working out than cardio.



I agree. I'll have to see if I can get films from about 7 or so years ago.


Just wondering if anyone knew, is this considered adolescent or adult scoliosis?

First, if you were diagnosed in high school as I was, it is adolescent idiopathic scoliosis. If you don't know how to swim, that is fine. They have those boards that you hang on to and kick your legs. It's very relaxing and good exercise. I blew everything off when I was discharged from the "childrens" unit at Pheonex Children's Hospital. I was told that I would probably need surgery some time in my 40's as I was very borderline at the time. 39* and surgery cut-off was 40* at that time. Well, I went on to have a family, blah, blah, blah, the usual stuff. Dropped out of college to do it. Little did I know what kind of stress having three little ones under the age of five would put on my spine. I began having my horrible pain episodes and I had NO insurance so had to bear through it. When I finally did get insurance there was a pre-existing condition rider on it for two years. I went to a general practitioner to get x-rays and check on my curve. They didnt know what the heck they were doing. I tried to get my x-rays from PCH to compare them and found out that my files had already been destroyed. It had just been seven years. All of my initial x-rays, except for my very last ones had also been destroyed. So I did manage to get those films just in the nick of time. They served no purpose, as a general practitioner doesn't know how to manage this disease, so the whole thing was a waste of time.

I ended up getting a divorce and moving cross country and getting a job to support my three little kids. I wasn't working more than a couple of months and sustained some kind of strain on my spine that sent me into a whole new level of pain and pain cycles that I am still fighting to this day (I'm 42 almost 43). My situation was such that in my new state I had insurance and my primary care physician sent me to a scoliosis specialist as this was out of his realm. I was 29 at the time and, as predicted, my scoli had progressed a little (I no longer had my childhood films as I forgot them when I moved and my wonderful ex destroyed them out of spite). I had passed the 40* mark and was certain I would have to have surgery, but the surgery cut-off was now 50*. So no surgery. Went back to school and got my BS degree with the help of many pain meds.

Meahwhile I got different insurance and had to see a new doctor. I researched and made sure he was an SRS doctor like the previous one. I was checked and NO progression, come back in five years. Five years later, my single major curve had turned into a double major curve and am looking at possibly a 14 level fusion, yikes! I'm supposed to be monitored every 1-1/2 to 2 years. My surgeon said I was in the "surgical grey area" at 46*. I experience long bouts of extreme pain (lasting up to several years at a time). No guarantees that surgery will help with the pain, so I'm in limbo as to what to do. I see a physiatrist and had a regular anesthesiologist for pain management (until he got a job somewhere else). I get injections, take meds that I don't want to be on, and am just trying to manage to live my life as normally as possible. Talking to others on here helps because people on here KNOW what you are dealing with and will give you honest information on their experiences with it. It won't always be what you want to hear, but beneficial none the less.

The reason for my story: Take your condition seriously and do what you can to stay out of pain. In your 20's you feel invincible, or at least I did. I was very active and aware of my condition but never kept it properly monitored. I have lost the most valuable x-rays that I have, my first ones. No one has anything from my teen years to compare where I'm at and that is important. Don't make the same mistake as me in losing those valuable films! Even if you don't want the x-ray exposure, at least see a specialist once in a while and make and KEEP your own records and films. They keep them all on CD's now so it's easier. Take care and best wishes for a healthy future.

loves to skate
11-23-2011, 05:41 PM
Try to get copies of your radiographs from your old doctor to bring to the new one. These are incredibly valuable for determining any progression rate and other changes.

If the xrays were from more than five years ago, they more than likely have been destroyed. That is why it is so important to get copies of your xrays as soon as you have them done. It's too bad that Doctor's offices don't let you know when they are disposing your xrays. They have always acted as if the xrays belong to them, but that is wrong.
Water therapy exercises are the very best for scoliosis or any back problems. I can swim, but have an aqua-jogger belt to actually do exercises in the pool. It is a great workout. Good Luck Zephy.
Sally

zephy
11-25-2011, 06:36 PM
Thank you for telling me your story, rohrer01. I'm sorry you've had to deal with so much pain over the years. I hope it gets better for you. I can only say I have mild back pain on some days, so I can't imagine what you have had to go through.

It's too bad I never knew I was allowed to have a copy of x-rays. About eight years ago they were still on film, and at that time neither my parents nor me were very aware of how the medical system worked. The imaging center let me have the x-ray to take it to the specialist, then they said you have to bring it back ASAP blah blah blah. I just called them today and they unfortunately do not have any copies anymore. I do still have the radiology report, but I guess that's not too useful since they didn't comment much more than the degree of scoliosis. At least nowadays everything is going digital so it should technically be easier to store longterm.

jrnyc
11-25-2011, 08:58 PM
just burn a copy of the disc before you give it back to them....

jess

zephy
11-26-2011, 12:35 AM
just burn a copy of the disc before you give it back to them....

jess

Yes, but this was oldschool, they handed me the actual films that you had to stick on the lightbox.

rohrer01
11-26-2011, 12:54 AM
Thank you for telling me your story, rohrer01. I'm sorry you've had to deal with so much pain over the years. I hope it gets better for you. I can only say I have mild back pain on some days, so I can't imagine what you have had to go through.

It's too bad I never knew I was allowed to have a copy of x-rays. About eight years ago they were still on film, and at that time neither my parents nor me were very aware of how the medical system worked. The imaging center let me have the x-ray to take it to the specialist, then they said you have to bring it back ASAP blah blah blah. I just called them today and they unfortunately do not have any copies anymore. I do still have the radiology report, but I guess that's not too useful since they didn't comment much more than the degree of scoliosis. At least nowadays everything is going digital so it should technically be easier to store longterm.

Looks like you came across the same problem as I did. I'm sorry. Scoliosis is the ONE condition that they should NEVER destroy the films! I have some films. I even have an MRI on film. I also have disks. I didn't know that they would ever destroy my x-rays, either. It's extremely frustrating because whatever doctor you go and see has to start fresh with nothing to compare. Radiology reports, as far as I'm concerned are worthless, as the radiologists do not measure them the same as the scoli docs and may distort the actual facts of what your spine looked like. Since I found out that films get destroyed, when I get copies of ANYTHING I never return it. I take it with me and let the new doctor make copies. Make sure you get them back. My last doctor didn't return mine, so I'm going to go to the radiology department and get them back along with my most recent x-rays. You have to do it this way, otherwise you end up with the outcome of starting fresh every single time you see a new doctor, or if you wait too long, even the same doctor. Again, I'm sorry for your disapointment. I know how you feel.