Re: Another TLSO Point of View

October 6, 2006

First, thank you everyone who has shared stories about how the scoliosis

surgery affected them - it's really helpful! I would be so upset if

Bernie lost abilities as a result of going for the surgery. I hope we

can put it off a few more years.

Our TLSO experiences:

Bernie is 10 years old and has been wearing a TLSO for about a year.

He's a strong type 2, and swims every day for exercise. His scoliosis

has been slowly progressive since he was about 5 or 6 years old and

started accelerating when he was about 8, so we tried the TLSO. It had

started increasing by about 1 degree per month.

In the first 6 months he wore the TLSO, scoliosis progression stopped

completely, and spirometry tests showed his lung volume stayed the same.

In the second 6 months, it progressed, but more slowly than it was

before the TLSO. Lung capacity actually increased a bit.

We always have the scoliosis xrays taken while he'd lying down, to show

the fixed deformity rather than the maximum curve. His curve is an S

shape, which I'm told is less common than a single curve like C or J.

When Bernie sits without the TLSO, he's leaning a lot more than he used

to. Naturally he's growing. Naturally he prefers not using it,

especially when it's hot. We try to keep him in it for most of the day,

and it does improve his ability to do other things - for example, his

writing is better when he's wearing it.

Most kids I see at the FSMA conference appear to be wearing TLSOs, I

think. I've asked doctors there, and found they support wearing it most

of the time. They acknowledge the tradeoff that a kid in a TLSO isn't

exercising the trunk muscles. It's a hard choice.

My suggestion: Try the TLSO for 6 months and see if it helps. If it

doesn't, discontinue using it. Obviously every child with SMA is

different, and each child's routine is different, and what works for one

will not always work for others.

Best regards,

Bettylou

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