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View Full Version : New to forum, new to scoliosis, HELP(& hello!)



from oz
09-18-2006, 07:47 AM
Hi, have just discovered the forum and am finding my way around the site. I am sure we will learn a lot here as it is all very new to us. We are from Australia and our 11 yo daugher Kaitlin has recently been diagnosed with scoliosis, her upper curve @35 degrees and lower @ 27. I don't really know what that means other than she has had a brace specially made for her (TLSO brace) and is currently getting used to it. She is to wear it 23 hours a day and is currently wearing it at night and for some hours in the day but we have only had it for a week so she is doing well i think. Of course she hates it now but is getting used to it. Summer will be a concern as it is very hot here - we are in the process of changing her school for next year to one that is air conditioned, that is another thing to contend with but the heat is very oppressive here and we cannot imagine her wearing a brace in a steaming hot classroom. Well, i would love to hear from anyone who has a daughter the same age or just wants to say hi. Bye for now, Melinda. :o

gerbo
09-18-2006, 10:51 AM
Hi and welcome to this site, where without doubt you'll find lots of relevant information (and a fair bit of irrelevant stuff as well, you'll learn the difference pretty soon) People here tend to be very helpful as many of us have been or are in a similar situatioin as you are and if you have any questions you tend to get a good range of views and opinions and facts.


I am the father of a now 12 year old daughter who was diagnosed 2 years ago with a 24 degree, latewr progressing to 29 degree T11 curve. Initially she was treated with a custom made TSLO (so not a Boston, which is a of the shelf system) but as on the one side she hated it (too restrictive, too hot in the summer) and on the other side I was unhappy with the correction achieved, we switched after a year to the "Spinecor" system, a much newer and therefore less established system which is more flexible and less hot in the summer. Currently we seem to be hovering round the 18 degree (in the brace)There is much less evidence for its effectiveness compared to studies with TSLO braces, but the one available big study is very promising, and some of us have had excellent results with it (but not everybody)

What I have read about TLSO braces; their results do depend on initial correction (aim should be 50% correction in brace) and time in brace, with 20-23 hours/ 24 hour usually quoted. Swimming is a weightless activity, so in the past we did not tend to count time in the water as time out of brace, that made it all a bit more manageable.

Suppose this will do as an initial introduction, feel free to ask anything you want, hope you and your daughter (and the rest of the family) are coping. Emotions can run very high when you are dealing with a condition like this which initially seem to take over most of your life. It does tend to get better with time though, fortunately.

macky
09-19-2006, 03:20 AM
So welcome to the forum. Another member from Aussieland. Where are you living. Only reason I asked is that you said it is really hot, so I gathered its not from around my area.!!

You will find that you will be able to get a lot of information on the forum, and the people here are really great and understanding.

I was operated on in Melbourne in 1966 as you can see. Who is your doctor??
Dont mean to sound like a sticky beak but it helps to get a bit of back ground.
If you would rather not say thats ok too.


Macky xx

cherylplinder
09-19-2006, 02:50 PM
HI!
My daughter, Rachel, is 10 and in the Spinecor brace. They tried the TLSO on her in December of 1995, but achieved no correction. I took her to Montreal for a consult in January of this year. I wasn't sure if the Spinecor would be a good choice and wanted their advice. So far her results have been really good. Her curve progressed 20 degrees in 1995(unbraced), from 18 thoracic/ 17 lumbar to 38 thoracic/ 27 lumbar, with about an inch of growth in height. In the Spinecor, she has grown 4 cm, and as far as I can tell by in brace measurements, her curve is holding with an in brace measurement of 31T/19L in January(her initial fitting), 23T/22L in April, and 20T/18L in August.
Because of her young age and large curve, she statistically has a 100% chance of progressing to surgery, but I hope to beat the odds. She is a juvenile case, diagnosed 3 years ago at about 18T/17L. Her curve held for a couple of years without progression, but took off last year.
Nonetheless, the Spinecor is holding her so far.
This is such a great site to come to for information and support! Welcome! And feel free to vent your frustrations and anxieties! I certainly have, and someone always seems to know just the right thing to say to make me feel better.
Hugs!
Cheryl