Trial using Night Orthotic

[Guest guest]

Hello all

On the weekend I went to a seminar in Melbourne (Australia) run by Prof Garth

Nicholson on 'Coping with CMT'. I wanted to let you know of some information he

gave on a trial he is running, the only one, he says, in the world of its kind

being run at the moment.

He is searching for young children to partake in the study which involves using

an

orthotic or splint on one leg at night for 6 weeks to hold the foot straight.

It

has an adjustable strap that can be pulled tighter as progress is made with

straightening. The other foot is done after the first one, so the child does

not

have to wear 2 orthotics everynight.

I thought it was interesting as I do remember someone on here writing about

their

early life some decades ago now and how their parents made them wear a homemade

padded splint everynight with the intention of keeping the foot straight. Even

though they hated it at the time, to this day, the person still does not have a

severe deformity in the feet. It seems that the 'old fashioned' way may prove

to

be the most effective afterall.

He also said that he had a patient from Mexico who told him that is how it is

treated in that country....simply because there are no orthopaedic surgeons

there! I did find out that the surgery my sister had, such as straightening of

her toes, is now deemed to do more harm than good. I think this is so in her

case. The overall impression I got was how difficult that decision must be, to

decide whether or not to have surgery performed by an orthopaedic surgeon.

Someone in the audience asked him about the pain associated with CMT. He said

that CMT itself does not cause pain, that the pain must come from another

source.

I was feeling quite an objection building up inside of me, bc I was thinking of

so

many people on here who would argue strongly that point.

Well, I am off to bed soon, as many of you will be getting up on your Tuesday

morning, so hope you all have a nice day, bye for now

Helen/Moggy