anyone out there wear a milwaukee brace???

[realmccoys]

Hi, all!

I have posted several times on the old forum, which I see is no longer an option...so, I'll try this forum.

My son ( 6) has a intramedullary JPA, has had 2 tumor resections, has been and is currently on chemotherapy, and has been wearing a milwaukee brace 24/7 for 15 months now.

He was just fitted for a new brace. The first brace he had was effective in correcting his severe kyphosis. When xrayed in his old brace, the kyphosis would improve by 30 degrees or so. When he was xrayed wearing his new brace, there was little to no correction to his kyphosis.....the brace guy thought his spine might have become "rigid". This second brace was designed by the same guy who did his first brace.

We will return to our orthopedist in a few weeks to confirm or deny this new "rigid" diagnoses.

So, is there anyone out there who has worn/or is wearing a milwaukee brace to correct severe kyphosis that has been caused by a spinal cord tumor?

If so, what have been your results?

I have glanced through some of the kids' spotlight stories and there just isn't much info about anybody wearing a brace after a tumor resection??

Any milwaukee brace feedback would be much appreciated

Thanks!

[bridger]

Hello,

You had responded to my posting back in January regarding my son having kyphosis, lordosis, scoliosis post surgery 3 years ago. Seth does not wear a brace but I think you had recommended to me that he get some plain films of his spine and to see an orthopedist. Well we are going to Seattle childrens on April 1st to see his NS and also has an appointment with an ortho guy who specializes in spine disorders after surgery. I am not sure what they will do but I thought I would thank you for the advice. I am hoping to get some answers on his back and why it is so bad. He has a lot of symptoms because of it and may be the brace will be the answer. His pediatrician said they really don't use those anymore very much so maybe that is why you have not seen much info regarding these. Anyway, just thought I would let you know and may be after his appt I will let you know what they say.


Kathy--Seth's Mom(astrocytoma spinal cord)

[Dawn]

I am so glad that I could be of some help to you. At least all of this knowledge is good for that I hope you get some answers at your appt. in April! The braces that kids wear today are very comfortable ( we got ours thru Shriner's). So, if you do end up going the brace route, it's not nearly as traumatic as you might think. My son rarely asks to take his off, if you can believe that! Our only concern at this point is weather it will be effective in correcting his kyphosis...which is at 70 deg. right now. Keep me posted how you make out. Dawn

[Dawn]

Dawn said:

I am so glad that I could be of some help to you. At least all of this knowledge is good for that I hope you get some answers at your appt. in April! The braces that kids wear today are very comfortable ( we got ours thru Shriner's). So, if you do end up going the brace route, it's not nearly as traumatic as you might think. My son rarely asks to take his off, if you can believe that! Our only concern at this point is weather it will be effective in correcting his kyphosis...which is at 70 deg. right now. Keep me posted how you make out. Dawn