h's kyphoscoliosis

[Guest guest]

I'm a new member with a 16 year old daughter, h, who has been

challenged by kyphoscoliosis for about 9 years. Her doctor kept

saying she didn't have scoliosis using a clinic viewing every time I

brought her in. Finally, I took her to a Shriner screening clinic

and they told me to get an xray. Then the doc took notice.

Basically it's been a watching game until last winter when she was in

so much pain she couldn't get out of bed herself. Finally we were

referred to UCSF pediatric orthopedic clinic in our area. That is a

zoo: wait for hours, no where to sit and then a rushed appt. I

understand the healthcare situation in CA, but I feel like I'm

fighting both the disease and the organization supposing to deal with

it. After our appt. h started physical therapy and wearing a

custom-made TLSO brace 22 hrs. a day. Since Dec. xrays her curve has

increased. Original doc says let's get new one. Doc she referred us

to also at UCSF says don't wear the brace, just do PT. A third doc

we met with just to see what someone outside of the system we've been

dealing with thought said, let's operate! M's kypho curve is nearing

80% and her scoliosis curve in a brace is 18%. New xrays without her

brace were taken yesterday. How do we know what to do? I've been

using the internet and it seems you have pain with or without surgery.

She is in pain and has limited phyiscal activities outside of PT,

some walking and swimming once a week. Lately her stamina level,

which has not been much, seems to be lessening. A five minute

workout with stretching makes her want to lie down and rest. Does

anyone have any experience with KYPHOscoliosis? Copes bracing

system? Supplements for bones. Some comments about UCSF don't

sound too confidence-building. I've tried to check out Drs. we see

and read about on orthospine.rep, but few are shown, and most have

only 1 rating. We have insurance, but the balances left after xray,

(seems to be monthly) MRI, brace, office visits, lab work, physical

therapy, etc. are, after only one year, starting to impact us

financially. I'm also concerned about the ongoing radiation exposure

due to all the xrays. Any comments would really be appreciated.