People who've been fused T2 to sacrum

[LynetteG]

Melissa - my fusion is quite long all the way to the sacrum, and my doctor says the same as yours, let your body be your guide. I have been also doing physical therapy, strengthening the core from the inside out basically, a lot of correct breathing exercises using your stomach to breath and not your chest, a lot of people breathe incorrectly through their chest, so being taught how to breathe through your stomach strengthens the core immensely. Also I'm doing arm weight exercises, lat pulldowns with weights, (my doctor said these are all fine to do now), squats, and other leg exercises, and with doing all of these exercises it has given me more movement and strength in my body, I don't feel so stiff now which is great. You sound like you're doing great Melissa, it's great to hear what you're doing

[Chris43]

Just curious

Hi, I'm pretty new to all of this. I asked all of my questions in the section titled:Parents of adolescents diagnosed with idiopathic scoliosis.I just happened to be reading some other posts when I came across this thread. I'm curious as to whether you were all diagnosed with scoliosis when you were adolescents and your parents opted not to have the surgery done when you were younger. Did any of you wear a brace and then told you were out of the woods? Did any of you have parents that opted for exercise programs, such as Schroth instead of the surgery when you were young? Or were you all diagnosed with scoliosis as adults? I am a parent of a 14 yr old who was just diagnosed and I'm trying to figure out what happens to the children whose parents took a more conservative plan than surgery. My daughter has a T41 and L48 curve and she has just been put in a Boston brace 22 hours a day. We really don't want our daughter to have the surgery, but after reading some of the stories here, you all seem like you were in alot of pain as you got older. I keep hearing that my daughter may end up with terrible pain as she gets older if we don't have the surgery. I want to make the best decision for her. Any comments would be greatly appreciated!Thanks!
Chris

[Confusedmom]

Chris,
You might get more responses to this question if you post it as a separate thread in adult surgery.

Anyway, to answer your question, I for one wore a Boston brace when my curve reached the 30+ area in my early teens. It worked, straightened me out, and when I graduated from college I was told I would not need to go back to my scoli doctor.

Eight years later, I was having some back pain and went to a scoli doctor. Was shocked to find out my curve had progressed to 55* and he recommended surgery. I still haven't had it (now age 38), and now I'm somewhere between 68-75*, depending on the xray.

I kind of wish I had had surgery as a teen because the recovery is supposed to be so much easier. On the other hand, I don't know what I would do if it was my daughter looking at surgery. You probably are safe to wait a while and see if her curve is progressing or not. I think I have read somewhere that braces stop progression of 20-40% of teens who wear them. So you might get lucky!!

Evelyn

[LindaRacine]

Hi, I'm pretty new to all of this. I asked all of my questions in the section titled:Parents of adolescents diagnosed with idiopathic scoliosis.I just happened to be reading some other posts when I came across this thread. I'm curious as to whether you were all diagnosed with scoliosis when you were adolescents and your parents opted not to have the surgery done when you were younger. Did any of you wear a brace and then told you were out of the woods? Did any of you have parents that opted for exercise programs, such as Schroth instead of the surgery when you were young? Or were you all diagnosed with scoliosis as adults? I am a parent of a 14 yr old who was just diagnosed and I'm trying to figure out what happens to the children whose parents took a more conservative plan than surgery. My daughter has a T41 and L48 curve and she has just been put in a Boston brace 22 hours a day. We really don't want our daughter to have the surgery, but after reading some of the stories here, you all seem like you were in alot of pain as you got older. I keep hearing that my daughter may end up with terrible pain as she gets older if we don't have the surgery. I want to make the best decision for her. Any comments would be greatly appreciated!Thanks!
Chris

Hi Chris...

You'll find a bunch of each that you mentioned. Scoliosis treatment is an imperfect science. All you, as a parent, can do is to choose a good specialist who can help you make informed decisions about your daughter's care. Most scoliosis specialists agree that there is no absolute proof that bracing works. No matter what you're told, there is no way to know whether bracing, or any other alternative treatment, will keep your daughter out of the operating room. Unfortunately, even surgery isn't a guarantee against more surgery somewhere down the road. Until the day when the medical community does know what works, I think it's reasonable to have your daughter wear a brace for as many hours as possible. However, if your daughter has the type of personality that will make wearing a brace into a drama that will last years, it's probably not worth ruining your relationship with her.

Regards,
Linda

[Pooka1]

I think I have read somewhere that braces stop progression of 20-40% of teens who wear them. So you might get lucky!!

Based on the few controlled trials, watching and waiting "stops" progression about 70% of the time.

About 20% are bracing failures... wore the brace but the child still needed fusion. These are very easy to identify though the reason may not be clear... it may be due to lack of compliance or that the child had a connective tissue disorder. Or the child was compliant, had AIS and still failed brace therapy.

That leaves only about 10% where the brace appears to stop the progression, at least at first. And then we can ask how long it stopped the progression. There is a reason why we get these testimonials about how people wore their braces and were clearly sub-surgical at skeletal maturity only to need fusion for progression sometimes even a few years out. That's a kick in the teeth right there.

ETA: There is even less data available for PT therapy. And Schroth at least admits PT alone will not hold the curve through the adolescent growth spurt and they will brace.