Re: [infantile scoliosis} new here too

[Guest guest]

Hi I am new here too. My name is Sara and we live in Orlando, FL. My daugher is 2 1/2 and just had scoliosis sugery last week. At 11 months she was dignaoised with a with congential scoliosis and had a thoratic curve of 47 degrees. It progressed to 65 degrees since then. All MRI's and CT scans came back normal and they couldn't find any reason this was happenening. Not none the less something has to be done. Bracing was not a fesiable option for her due to another medical condition she has (a skin condition called Epidermolysis Bullosa). Anyways, last week she had a procedure done called Anterior Spinal Epiphany Siodisis. They basicly temporary fused her spine btw T6-T11. They used five small plates and 6 screws (similar to the ones used on knees and feet) to try and get her spine to stop growing in the direction its growing in. We won't know for years if

it will acctually correct her curve, but hopefully it'll stop the progression and either correct on its own or till she is older and something more prememant can be done. This is a very new procedure and only one other doctor in the country does it. (someone in Philly). Surgery was 2 hours, she had a chest tube and her incision is only 4-5 inches long. She was in the hospital only 5 days and by day too she was sitting up in bed eating chips! She bounced back really well, all the doctors were amazed. I am not sure if this procedure will work for anyone with scoliosis. Her curve is a "C" curve and in her rib cage area.But I just wanted to say hi and tell our story.

Sara

nichabrad <nichabrad@...> wrote:

Hi, I am new here and wanted to introduce myself. I am . My son is . He is 7 years old and has had 2 back surgeries for scoliosis. He also has Arthrogryposis and is in a wheelchair. Anyway, when he was born his back was 33 degrees in the center with a compensatory curve at his neck of 25 degrees. By age 2 his curves were 77 center and 44 neck. He had an anterior and posterior spinal fusion using his ribs as bone grafting on March 1, 2000. He had also had a detethering of the spinal cord in early 99 but it did not help. His spine was reduced to 56 degrees in the center but over the course of the last 5 years has still made a slow progression. It is now 72 once again and we're looking at yet another surgery. I am very upset as the first surgery was HORRIBLE and bracing doesn't work with his curve because it is

rigid. Surgery seems to be the only option.We are in Atlanta Georgia so he is getting help through the Emory Spine Clinic at Children's Healthcare of Atlanta. They are some of the best doctors in the world here. I trust them but don't want to see him going through a fusion with rods at 7 years old. If there is anyone out there that might be able to help ease my mind or has ideas or options they know of that aren't so invasive, I'd really appreciate it. His next followup visit is Dec 1, 2005.