View Full Version : New and overwhelmed

11-17-2004, 10:11 PM
My son 13 was diagonsed with scoliosis in August2004 he has 3 curves 9,10,11 degrees.at that time i was a little worried. being that my niece the year before had to have the spinal fusion surgery.but the Dr. said we'd watch the progression 3 months come back. last week we had our recheck and he has progressed to 21,20,20 degrees. as a mother devestated that my son will have to wear a brace and terrified of Surgury.i'm a bit overwhelmed i have ben on the net and contacted our sacramento valley NSF chapter for some insight.

anyone have suggestions on what i need to ask on our first visit with the specialist.we are being seen Friday Nov 19 in Woodland,CA.

maybe how long it took for you to get a brace after your first consult with the specialist?

thanks any advice is helpful...

11-18-2004, 08:03 AM
Hello....my daughter is 12 and she was diagnosed in 2001. I can't remember exactly what her curve was then (low 20's maybe?)but they went right to bracing. They set the up appointment for the brace within just a couple of weeks. It's actually kind of amazing how they fit them for the brace. They suspend them over this weird contraption and then they wrap them in plaster so they are in a complete body cast. Then when it dries (about 20 minutes) they cut the cast off.
After that was done, it took about 6 weeks for them to make the actual brace itself. We then had to go in for the fitting that takes about 2 hours. They put it on then they have to keep adjusting it and cutting it down for the perfect fit.
If they do go to bracing the most important thing is to stress to him how important it is to wear it. We had a constant fight with my daughter to wear her brace. We even bribed her with money to wear it. But she would never put it on. Her curve is now beyond bracing and has gone to 53 degrees and she is being scheduled for surgery for the spinal fusion in January.
Don't be scared over the brace, it's really nothing...if you can get him to wear it :)
Everybody on here is wonderful, and full of information!!


11-18-2004, 08:07 AM
Being new to this experience also, I can only advise what happened to us. Last summer, my 12 year old daughter's yoga instructor noticed her back had changed.

My daughter had xrays in early August which showed a 27 degree curve. It was almost three months waiting for an appointment with the orthopedist. Fortunately her curves did not progress over those months. The orthopedist said I could wait another 3 months but my question to him was " is there any chance she won't need a brace?" The answer was no. So why wait? The curve can progress rapidly during a growth spurt. So, at my encouragement, they immediately prescribed a brace. It was two weeks waiting for that appointment and another two weeks waiting for the brace to be made. We pickup the brace on Monday. Whew!

I've read that bracing only stops the curves where they are at the time you begin treatment. So I guess, the earlier, the better.

Joe's Mom
11-19-2004, 07:30 PM
I can remember so clearly the day I found out my son had something amiss with his spine . . it was Valentine's Day and a letter arrived from the School Nurse that he had failed his scoli screening in 8th grade. Having had previous foot deformity which required surgery, PT and an orthotic, a BIG red flag was rasied for me.

I first tried to call the local ortho dept . . I got voice mail, left a message and NO ONE EVER called me back! Even to this day! And it is 2 1/2 years later! Well, after an hour or so, I picked up the phone and called a children's hospital one state away but had a reputation of being a stellar ortho facility for kids. A live person answered the phone and I told her his history . . . I know this was luck, but I got an appt the next Friday with the dept. head who was a scoliosis specialist.

Long story a little shorter . . . he started out with a 28 degree scoliosis curve in 2002 . . it has now progressed to 33 degrees at age 15 . . .1 year ago kyphosis was added to the mix and the scoli curve seems stable but the kyphosis curve is progressing about 5 degrees each 6 months . . .so we are still on wait and see, but feel that surgery will be likely at some point to address a progressively noticeable deformity for him.

One thing I have discovered over this time period is that there really isn't any hard/fast rules or policies or procedures. Nor are there very many clear cut answers. It is very frustrating at first, but now that I understand that this condition is not well understood and more in not known than known. Sigh.

But hang in there . . . call around if you can't get a prompt appointment and you may find that if you are willing to travel you can get answers sooner rather than later. You can always return to your home area for consistent followup once you have a clearer picture of what you are dealing with. Sometimes I think it is good to have a couple of folks input for such a complex condition.