View Full Version : Our new saga -- on the surgery waitlist

07-19-2008, 11:08 AM
It's been ages since I've been here (sorry for those that sent me PM's).

Things had just been going status quo and I just hadn't really been on many sites.

We had DD's regular 6 month check at Shriner's (Chicago) yesterday and the notice of the curve is progressing and it's time to get ready for surgery speech happened. :( I just had a feeling it was coming.

She does go back in December and it *is* possible that they may change their minds and not go but as of right they went ahead and put us on the waitlist & the doctor said we are looking at February.

DD had a 40-42 curve and it is now at 48. She did SO good wearing her brace but alas, it was not meant to be. They had warned us prior to starting the bracing that was a huge possibility. Since she was so in that gray area when she started between age & curvature.

They basically told me to just start getting everything ready for surgery (i.e. talking to her school about tutoring, etc...). IF in December they change their minds, no problem but if they don't then at least everything is in place.

I'm just trying to get my brain wrapped around everything at the moment. Luckily, I had done a lot of research before the announcement so was pretty comfortable with what they were telling us but they will go over more of it in December.


07-19-2008, 11:29 AM
I wonder if the rate of movement is related to the amount of progression expected.

My one daughter's curve moved very quickly and yet no brace was suggested even when she hit bracing territory. My other daughter's curve moved more slowly and she was told to go with a brace.

Are there any papers looking at the rate of curvature and eventual progression?

07-19-2008, 11:47 AM
I really don't know. DD has been wearing a brace since December 2006.

We would go in for check's every 6 months (had been 3 at first) and it was doing OK for a while but the curve isn't holding so...this is where we are at.

Poor DD & I were just trying to figure it out because it seems like she has had the brace forever but it really hasn't been that long. We thought it was a lot longer. I guess that means the curve has progressing pretty fast.

07-24-2008, 07:04 AM
sorry to hear about your daughter's progression. The only other non-surgical option might be to go to a more aggressive brace? What brace was she wearing? The Cheneau is a bit more aggressive than most Boston braces.. Schroth therapy also helps with muscular balance issues which may halt the curve. My daughter's worst measures were 47' & 48' in 10/07 - however, after learning schroth and practing daily for 4 only 4 months we see NO progression and a new measure of 42' & 45' = we too are in the "gray" area- but trying everything before surgery... She has no pain so there is no rush for us.
Good luck


07-25-2008, 09:04 AM
She wore a TLSO brace since December 2006.

08-17-2008, 10:56 AM
Ah, I remember when I got my offical surgery date...definitly overwhelming and finally made it seem REAL after knowing for 2 years that I had scoliosis.

The surgery is definitly a big deal and the recovery is VERY difficult at first, but it's totally worth it. I am sooo glad I did it....haha even though this summer WAS pretty boring for me.