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Kimber
03-09-2005, 02:03 PM
Hi Everyone,

I have been reading (lots) and sometimes posting on these message boards for the past 1 1/2 years. I just wanted to write and share my daughter's experience with the brace treatment and where she is with her scoliosis as of the last xray.

At diagnosis she was 11 1/2 years old. She was a risser 0 and no menses. Her curves were 36 thoracic and 34 lumbar. She began wearing a TLSO for 16 to 18 hours per day. The first year she usually was in it for a good 18 but this last year it has been more in the 16 hour range.

As of today (she is now 13 as of Jan) and has grown in height about 3 1/2 inches since diagnosis. Menses began last month. Her risser is 4 1/2 and her curves are 33 thoracic and 38 lumbar after being out of the brace for 5 days. Her physician is saying that her growth plates look like a woman who has had her period for almost a year which she has only had it for 2 months. He is going to recheck her in 4 months. He thinks she will probably be out out her brace in 4 to 6 months. We are so thankful and relieved that her curve has remained relatively stable over the last year and a half. Now here is the gray area..... According to our physician there is a good possibility that her lumbar curve could increase in adulthood because of its location. He said that this is somewhat anecdotal and that there is no way to know which curves will hold and which ones don't. Do any of you have any experience or knowledge of this. He said that the data is not there to quantify those curves in her range that do end up progressing in later years.

I just wanted to share her experience with bracing. I have read so much over the last year and sometimes I just think scoliosis is a big mystery.

Thanks for listening and sharing,
Kim

Carmell
03-11-2005, 12:43 PM
Hi Kim,

Interesting comments your ortho made. Maybe he knows something about your daughter, specifically, that we don't know. Hmmm...

Our experience with this is very similar to yours. My daughter was diagnosed with scoliosis on her 13th b-day. She began menses 3 months later. Her ortho explained to us that the majority (not all, but most) adolescent idiopathic scoliosis patients' spines will have their major growth spurt either the year prior to menses or within the year after. Every person is different. Even after the major growth spurt, if menses has recently happened, the spine can still grow a little, but wouldn't likely grow as much as with a major growth spurt.

For my daughter, her growth spurt happened about 6 months after menses began. She grew about 4 inches and her curves increased more than 10 degrees each (she has a lumbar curve with an upper compensatory curve/roration). At age 14, her Risser score was 5 - showed complete skeletal maturity.

K - now my theory part... Kara's scoliosis actually improved over time. At her last checkup in Aug 04, she was 18 yrs old. He lumbar curve had improved from 39 degrees to about 33 degrees (within margin of error? maybe). Her upper curve had improved from 26 degrees to about 12 degrees. The rotation of her curve has not changed. So, for her, continuing through her adolescent years has actually been good for her scoliosis. She continues to be active (Pilates, etc.) and tries to keep the soft tissue and muscles, etc. strong to support the spine. Coincidence? I'm not sure.

Our ortho told us that lumbar curves of 40 degrees or less have as much chance of progressing in adulthood as the general non-scoliosis population. Basically, the risks are minimal. Yes, there is a chance the scoliosis can get worse, but I believe that unless they figure out what causes the problem in the first place, the rate of progression is hit-and-miss - no one can fully predict who is going to progress and who won't. This being said, my daughter fits into that fictional (maybe?) category where she won't have to worry about her scoliosis ever again. Hmm... is this true? We'll see.

I know there are many factors that play a part in scoliosis and growth. As adults who had mild-moderate scoliosis in their teenage years, how many develop problems (not necessarily curve progression) in their later years which require medical intervention? How much does childbearing play in an adult progression of scoliosis? How much does lack of being physically fit play in progression of adult scoliosis? How many of the questions are studied and documented? I don't know. It will be interesting to see how our kids do as adults and to see what the future brings for them.

Kimber
03-11-2005, 03:15 PM
Carmell,

Thank you, thank you so much for your very thoughtful reply!!!!!!! I am so encouraged to hear that your daughter's curves have actually improved. My brain and my heart were telling me that we are on the right course with Catherine and your words actually help confirm what I have been thinking. Catherine did work with an excellent Pilates trainer last year until the trainer cut back on hours because of having a baby. Tomorrow she will go to a new trainer who sounds very promising in her knowledge of Pilates and scoliosis. I am so thankful to have this forum that enables us to meet others in similar situations.

Many thanks again for taking time to write me.

Kim

Kimber
03-11-2005, 03:18 PM
Carmell,

One other question please........ What was your daughter's risser at the time of diagnosis?

Kim