scoliosis info--long

[Guest guest]

Some of the previous posts about scoliosis got me thinking, and I

decided to do a quick search of the literature to see what is out

there about the effective treatments for scoliosis. It was a brief

search, but I did come up with a few things to consider.

The literature out now is mixed. There always seemed to be some

failure with children who were braced. That means that some

percentage of children who were braced still had progression of

their curves and went on to require surgery. However, in the

majority of studies, there were favorable results (meaning slower

progression or halted progression of curves, and no need for

surgery) when the braces were worn daily for more that 18 hours each

day. There were studies that measured success with different time

increments, and they all concluded that the braces needed to be worn

for a minimum of 18 hours daily.

The braces are effective only when worn by those who are skeletally

immature. Typically, this is in pre-pubescent individuals, but I

know that this is different with CHARGE. I believe that growth

hormone is used to induce puberty and growth. If this is already

being done, that the braces might no longer be effective. Once the

growth plates are closed, then the braces are not effective.

The braces are usually worn for 2-4 years, or through the last few

growth spurts and entrance into puberty. Again, I think this might

be very different with some CHARGErs, especially if puberty is

significantly delayed. Also, if a brace is introduced earlier

(since they are typically introduced around age 12), then the length

of need may be longer.

The type of brace may also effect the outcome. Many of the studies

used the Boston brace, which typically had good results for lumbar

scoliosis. As Yuka previously stated, the Milwalkee brace did

better at helping with upper thoracic and cervical curves than the

Boston brace did. However, one study looked at quality of life

comparisons between users of different braces. The Milwalkee users

had the lowest quality of life reports, most likely due to the

presence of the cervical (neck) part of the brace. The ton

brace had the best reports for quality of life, but had poorer

results than the Boston brace in effectiveness.

One drawback of the majority of this literature is that it is mostly

written about idiopathic scoliosis (with no known cause, in

individuals without any other disease process). Obviously, with

CHARGE, there are many reasons for scoliosis to occur, including

abnormal muscle tone, cardiac surgeries, abnormal shaped vertebrae,

vision and vestibular issues, etc, etc, etc. There was one

retrospective study about people with Downs Syndrome, in which

bracing was not found to be effective and a large percentage still

required surgery. This may be more applicable to those with CHARGE

because of the low tone and high incidence of cardiac/thoracic

surgeries.

A lot of the literature mentioned that the braces were used in

conjucntion with specific exercises, stretches, etc. As a physical

therapist, I would definately be in support of this. (smile)

Obviously, this is a difficult decision for anyone to have to make.

No one wants to see their child suffer, and I don't think anyone

really wants more surgeries. In my opinion, bracing is worth a

shot. If it fails and surgery is still required, the progression

may still have been slowed so that the surgery has better outcomes

(and the back will be a little straighter overall). While it may be

a struggle and unpleasant, at least you will have tried. Sometimes,

there are no easy answers.

Thank you for letting me express my opinion, and for the chance to

use the skills I have learned in my research classes while persuing

my doctorate (at least I feel that that tuition was well spent). I

hope this information is helpful, and that I did not overstep any

lines. I was just trying to be helpful.

Kate (PT to a CHARGEr), New York