Questions for Mary Lou

[Joe's Mom]

Hi Mary Lou . . .I know a while back we communicated as both of us live in PA. My 15 year old son has kyphoscoliosis as does/did your daughter!

My ??? for you (and forgive me if you posted this earlier - - - I obviously missed it!) is
When and Why did the doctors determine that surgery was indicated? What were the symptoms or degrees of curve your daughter had that warranted surgery?

What was different about her surgery as she had a double disorder (kyphosis and scoliosis).

Sounds like things are going so well for her! I will anxiously await your replies!
TIA

Joe's Mom

[Mary Lou]

Hi Joe's Mom....

Jamie still has Kyphoscoliosis and always will as they never get complete correction. Her Kyphosis before surgery was about 72* corrected to 33*. Her Scoliosis was about 46* and corrected to 14*. We are very pleased with her numbers!

I'll try to give you the brief version of what led to surgery for Jamie. Feel free to e-mail me if you want further info. She was diagnosed Aug. 2003 (age 12) with Kyphosis of 71-75* depending on who measured her; Scoliosis was usually measured at about 36*. Tried Milwaukee brace; tried Boston brace. Jamie started out at a Risser 0 and is now a Risser 5, which means her bones are almost completely mature. Usually once skeletal maturity is reached, progression stops or atleast slows. Jamie has continued to progress. Her surgeon was our fifth opinion so we didn't just jump into this.

I don't know that they really did too much differently because of the Kyphosis and Scoliosis. They did do some things differently because of her size. She is 13 y.o. and only weighs about 90 lbs. Her pedicles were to narrow so they couldn't use pedicle screws. They used hooks and wires. The one thing they did do, that I have never heard of before was the fact they did "Smith-Peterson osteotomies" to help correct kyphotic deformity. Instead of removing ribs, they actually remove facet joints and soft tissue between vertebrae and they then used that bone plus synthetic bone material to use for the fusion.

I hope I've answered your questions. Feel free to ask about anything else that is on your mind. I've forgotten--what hospital do you take your son to?

Mary Lou

[Joe's Mom]

Thanks, Mary Lou,

My son hasn't reached the end of growth yet, but he is getting close. I suspect that by our springtime visit he will be there or almost there. We have been to Children's in Pittsburgh and in Cincinnati. Right now he is seeing the ortho in Pittsburgh.

His scoli seems stable at around 28 degrees but the kyphosis seems to be progressing at about 5 degrees every six months so that is what they are really watching.

They keep saying that surgery for the scoli isn't needed as the degree is not that great and it is stable. They also say the surgery for the kyphosis would be cosmetic, but they are worried about the progression.

As parents, we look at our son sitting and see the deformity. He has recently started getting headaches for the first time ever and we wonder if that is due to the scoli/kypho or not.

It sounds like your experiences were positive and that is so good to hear. I take it that the progression of the kyphosis was the main issue . . that may well be our case as well. Thanks again for your input.

[matt]

I had the surgery if you have any questions!

Hi Joes Mom. My name is Ross. I'm a 15 year old boy with Scoliosis and Kyphosis (Scheuermann's Kyphosis Disease). I had the Scoliois and Kyphosis surgery on 9/20/04. If you have any questions or just want to talk, my email addy is hard_roc_child08@hotmail.com

I hope that I can help you!!!
If you read this, HI Mary Lou!!!

Happy Holidays!
Ross