Need Help...What should we do

[lonedog]

Hello,I just found this forum and find it to be very helpful and informative and need a little help.My daughter who is almost 12 and a half was recently diagnosed was sciliosis with a 35 degree upper and 25 lower.I never noticed anything and was shocked when her mother told me.What I need opinions on is what to do now.Her mother said after the latest x-rays they said she was done growing.She's about 5'5" now.The doctor said they can put her in a brace but theres no guarentee's and with her stop growing it might not get any worse.I really don't know what to do.Any opinions would be appreciated.Thank you

[LindaRacine]

Hi lonedog...

First, you might want to move your post to the Parents area:

http://www.scoliosis.org/forum/forumdisplay.php?f=101

The message is currently posted in the area for adolescents and teens.

If your daughter is done growing, research has shown that bracing will not do any good. The good news is that she has a really good chance of never needing any additional treatment. However, she should see her scoliosis specialist every 5 years or so, or if/when she starts having any issues with pain.

Regards,
Linda

[miranda_m]

Hi Lonedog,

I am a 30 yr old woman about to go undergo spinal surgery. I have also found this forum really helpful and supportive. At a v diffucult time in my life it was a relief to read about so many similar stories and realise I was not the only one out there.

I was a similar age to your daughter, I was around 13/14 when my mum discovered my scoliosis. I was never told to wear a brace. I was monitored every few years and my curve gradually got worse.

The reason that I am replying to your post is to tell you about a few things that helped me and so may help your daughter.

Around the age of 24 I discovered Pilates and more recently Gyrotonics. These forms of exercises help with stretching, building core strength and most importantly help to build the muscles in the spine that are weaker. Pilates, I found was a real realise for my aches and tightness, which grew wose around this time. I have taken 4 months out of my life to get myself physically stronger for my operation by doing an intense course of these two exercises and various other alternative therapy classes.

I don't really think people knew about Pilates then but I believe if I had known then what I know now perhaps I could have made myself stronger and really built up the weak side so that it would have helped stabilise my curve. But I can't medically prove anything this its just my personal opinion.

As your daughter gets older or even now, Pilates and Gyro can really help those with Scoliosis.
I hope this helps a little and feel free to write back if you have anymore questions.
M

[lonedog]

Thanks for the advice Miranda and Linda....I wasn't to sure where to post.My daughter goes back in 4 months for more x-rays,I really hope they don't get any worse.Thanks

[Jen-jen]

Hi lonedog,

I'm 16yrs old but I was diagnosed with scoliosis when I was 13. My curve is roughly the size of your daughter's too. I've opted for surgery as I was never offered a brace as my doctors tell me that he doesn't believe a brace helps in the long term. I know that many people will tell you differently but that's the reasoning behind my option for surgery. I'm not saying that you should consider it, but I was also told that now that I've finished growing there would be little chance of my curve developing. They were wrong, my curve got bigger and annoys me (and at times pains me) more every day. Explore all your options, and if you need anyone you know exactly where to come. This forum is a life-saver. Hope this helped.

x x

[The Slice]

Talk to the doctor, and get advice from them on how long your daughter should be followed. I would suspect that to be on the safe side, she should be checked and x-rayed every 4 - 6 months for another 1 - 2 years, but the doctor is probably the best judge of this. It's likely, that depending on the results of the next set of x-rays in 4 months, that the doctor will want to either see her again in another 4 - 6 months, or will suggest less frequent follow ups, say every 5 years. if this doctor is not a scoliosis specialist, I would suggest that you at least consult with one, and in this case, you can probably get copies of the latest x-rays to take with you rather than her having to get them again. Also, talk to the doctor about what symptoms your daughter should be on the look out for that might indicate that there are problems - that her curve may be worsening.

[gerbo]

difficult one, specially as she might have finished growing so anything you do might be for no purpose at all. At 35 degree she hasn't got much room for deterioration and she might, might still grow abit and get worse.

If you want to do something, just in case it helps, and knowing it won't do much harm (but the nuisance factor) and it might just prevent surgery, I'd suggest you get het fitted with a spinecor (which is quite bearable) and see whether it gives any immediate correction. It should help to stop things getting worse. Note that i am a bit biassed to that brace, but i am not the only one. You have to move quick though, for it to be worthwhile (potentially). Wonder what other spinecor parents would say....

if it was my daughter, and knowing what i know now, i'd have little doubt (but wouldn't have very high hopes neither)

[christine2]

I have recently read on this forum where adults are even getting corrections from Spinecor. I could not hurt to try.

Christine

[The Slice]

I feel that I need to add my two cents again. Bracing, in the majority of cases, will NOT correct a curve. It will hopefully stop, or slow it, from progressing until the person has stopped growing. In the case of this girl, it's hard to know what is the correct thing to do. It might be beneficial to get a second opinion from another scoliosis specialist and have them evaluate the severity of the curve, and the status of her growth. At 12 it is very possible that she has not in fact finished growing, although further growth wouldn't be real obvious. Remember that during the growth spurt of adolescents, the last part involved in the growth spurt is the spine (the long bones of the arms and legs are first, usually followed by the fingers and toes). (This is why during the early part of the growth spurt many kids look so tall and "spindley".) A second opinion may either raise, or eliminate any doubts as to whether further immediate treatment is needed. Remember that if she has to be braced, it WILL NOT correct what curve is there, but will decrease the chances that it will progress further. At some point a decision will need to be made as to whether to have surgery to correct the curve, or leave it be. It's a decision that your daughter should be very much a part of making.

[Showtime]

Hello,I just found this forum and find it to be very helpful and informative and need a little help.My daughter who is almost 12 and a half was recently diagnosed was sciliosis with a 35 degree upper and 25 lower.I never noticed anything and was shocked when her mother told me.What I need opinions on is what to do now.Her mother said after the latest x-rays they said she was done growing.She's about 5'5" now.The doctor said they can put her in a brace but theres no guarentee's and with her stop growing it might not get any worse.I really don't know what to do.Any opinions would be appreciated.Thank you

Read my thread and write back if you have any more questions. I hope this gives you some new ideas. There are no guarentees and that is why I chose to do what I did. I am never sorry. Only sorry for the limitations of those that chose the other routes. Everyone is different but it is nice to know the consequences long term of a whole new look at it.
Showtime

[Showtime]

I feel that I need to add my two cents again. Bracing, in the majority of cases, will NOT correct a curve. It will hopefully stop, or slow it, from progressing until the person has stopped growing. In the case of this girl, it's hard to know what is the correct thing to do. It might be beneficial to get a second opinion from another scoliosis specialist and have them evaluate the severity of the curve, and the status of her growth. At 12 it is very possible that she has not in fact finished growing, although further growth wouldn't be real obvious. Remember that during the growth spurt of adolescents, the last part involved in the growth spurt is the spine (the long bones of the arms and legs are first, usually followed by the fingers and toes). (This is why during the early part of the growth spurt many kids look so tall and "spindley".) A second opinion may either raise, or eliminate any doubts as to whether further immediate treatment is needed. Remember that if she has to be braced, it WILL NOT correct what curve is there, but will decrease the chances that it will progress further. At some point a decision will need to be made as to whether to have surgery to correct the curve, or leave it be. It's a decision that your daughter should be very much a part of making.

Read my thread (Showtime). I was never braced and after my growth spurt was done I just continued my life as normal never babying myself. I have had a very active, very demanding busy life I would never change. I am very glad I didn't brace or do surgery. I am glad I have learned to make sure to watch my children starting at age 9. I had studied and learned what to do the minute it showed up if it did. They have no problems and what curves developed went to almost nothing (2degrees) or gone. They still keep up chiropractic and their sports or rigorous exercise at older ages. Diet of increasing the calcium intake and other things has a great affect on keeping strong bones for so long. Just a thought.
Showtime