My husband and I again find ourselves in a race against time to find answers to a medical problem involving our son Brady. You may remember that he was diagnosed with cancer last year and had two life threatening operations as well as chemotherapy. His cancer is now stable and he has made an amazing recovery.

Our newest concern is for his spine. His first surgery (done just hours after being diagnosed) was a 5 level laminectomy of his thoracic spine (T2-T7). They needed to do this in order to access the tumor in his spinal column. Fast forward 12 months and Brady is starting to experience slight scoliosis (13 degrees) and more signficant kyphosis (50 degress). The biggest concern here is the progression of the kyphosis...just three months ago is was only 37 degrees.

The orthopedic surgeon that we work with in pretty much telling us that there is not much that can be done...just a wait and see approach. If it gets bad enough some day, he will recommend a spinal fusion. My husband is a PT and the words spinal fusion concern him very much as he sees the fall out from such surgeries every day at work. We are reading and researching tirelessly about other interventions, but with this sort of post surgical kyphosis, there is little evidence based research out there.

I thought I'd throw this out to my TC family as I've received such wonderful advice here in the past. I'm also always amazed at the many issues triplet families have experience with, so possibly someone has advice to share. We are planning on consulting with anohter orthopedic doctor for a 2nd opinon. We traveled to NYC for Brady's 2nd surgery after finding who we thought to be the best in the world, so we are willing to do whatever and go wherever to get him the best help possible.

Thanks

Mommy to Eli, Cara, and Brady 4/24/07 born at 34 weeks and Allison Elizabeth (surprise!) born 11/6/08

Read about my son's battle with Neuroblastoma at stepsforbrady.blogspot.com

I am sorry that you are dealing with yet another problem. I have a son with multiple complex medical problems so I can relate. His name is Braden but we call him Brady If you are on facebook send me a friend request Lori Wild and I can maybe help refer you to some sources there.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

There might be someone here who could help ?
http://www.complexchild.com/

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I have a friend with Sciolosis, that also works in the medical field, and she suggested some Neorosurgeons out of Children's Hospital of Pittsburgh. I know you're from New York, but here are some names, just in case they have something different to offer:

Ian Pollack, Stephanie Greene, or Elizabeth Tyler-Kabara.
Children's Hospital of Pittsburgh Dept. of Neurosurgery
4401 Penn Avenue, Floor 2
Pittsburgh, PA 15224
412-692-5090

Best of Luck to you Megan. Thinking about you often.




Jamye

Lorraine and Jamye---thank you so much for your help!
Right now we are looking at any and all possibilities!

Mommy to Eli, Cara, and Brady 4/24/07 born at 34 weeks and Allison Elizabeth (surprise!) born 11/6/08

Read about my son's battle with Neuroblastoma at stepsforbrady.blogspot.com

I just learned too, that Pittsburgh is renowned world wide for it's prediatric neurosurgery. If you come this direction, be sure to let me know, okay?




Jamye