Need help/info/guidance...answers..back to square 1

Shelly - posted on 11/08/2013 ( no moms have responded yet )

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My son was diagnosed at birth with congenital scoliosis. He has a segmented bar and hemi-verts in the upper thoracic region (T1-T6). This has caused his left side at the neck and shoulder to be sunken in, he has very little neck before seeing his shoulders and the left shoulder is dropped down because it has grown under the scapula bone. We've been on this roller coaster ride for going on 16years, he's had several Drs looking and handling his condition. He has not had spinal fusion as of yet, we opted for the VEPTR devices so he could attain as much natural growth as possible. Through his natural growth however due to the high thoracic malformation his spine has grown more horizontal than vertical and created a more prominent hump of his left shoulder blade. When he was 3 the Drs wanted to do halo traction and spinal fusion from about C3 to L3, but that would stunt his growth and there was no guarantee of further issues it would create as he aged. As I said, this was not for my VERY active 3yo, who until recently was busy with Soccer, Scouts, Band, Martial Arts. He's had a very positive childhood. He is getting close to being skeletally mature, and the Drs again are focusing on a halo and full spinal fusion C2 to L4. Surgery is not so much the worry, we've been through LOTS of those with the VEPTR devices. It's the further loss of mobility and flexibility. Fusing so high in the Cervical region will restrict his head movement and going all the way to his lumber will take away any ability he has to turn his torso without turning his body. He's always been an active kid, we've always encouraged him to reach for his dreams - he's not "disabled" in our eyes. However these last couple years have been difficult, as he's developed and "sees" others around him he also sees the "differences" and it's taking a toll on his mental/emotional well-being. This has affected his involvement in activities and with friends. He's also had his eyes on a military life, but the surgery will absolutely prevent that.

He's depressed and hurting, I'm depressed and hurting, as "Mom" I want to help make things better ...but how? My brain is literally in pain hours of researching, reading trying to find options or alternatives the first time around was bad enough at least when he was little I could get a smile and hug and it'd make me feel a little better. Now I sit here crying while I've read my son's fb pages wishing it would all end.

Thank you for letting me vent. I just want some answers. I just want some options for his sake. Nothing is finite, the yellow brick road does not end I just need help finding it.

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