Anyone have Congenital Scoliosis? - Bone Disorders Message Board

kippy6 · 03-18-2003, 10:32 PM

Congenital Scoliosis results only from birth defects. This is not the same as idiopathic scoliosis, where someone has a spinal curve, and they don't know why.

In congenital scoliosis, the spinal curve can be a real problem. It's not treatable with a brace since it is caused by a birth defect of the bone, i.e. vertebrae. The curve usually progresses much faster than a person with idiopathic scoliosis, and after the curve reaches 40%, this usually indicates that surgery is needed. Also, many times people with congenital scoliosis have other associated birth defects as indicated in the "VATER association."

If you have or know anyone with Congenital Scoliosis, please post your message here for the time being. People with Idiopathic Scoliosis, please start a new thread. Thanks!

franjo · 03-20-2003, 09:26 PM

Hi Kippy6,

I have congenital scoliosis also. I think I posted to your "Suggestion for a New Forum" post. I'm currently trying to find treatment for a tethered cord. I'm just finding out that a fusion done in '70 did not heal with solid bone, so when they removed the supporting rods in '87, the added curve further stretched my already tethered cord. I'm not sure if they will try and re-fuse in hopes of alleviating the stress on my tethered cord, or go for the untethering first, then the possible re-fusion. I've seen four NSs, and so far, each has sent me somewhere else. I've been to Cincinnatti and currently am seeking help in Chicago. All involved have said that I need this surgery, yet it seems no one will agree to perform it. In the mean time, I'm showing deterioration of motor functioning (I was diagnosed with a re-tethered cord last Aug.).

I have many abnormalities of the spine, and am just now (at age 44) educating myself about some of them. As a matter of fact, I only recently learned that my scoliosis is congenital. I'm a little embarassed to admit that I didn't know that, but this has been such a part of my life growing up, I guess I was complacent about it. Also, back then, not much was explained to the child in a way that they could understand.

How are you doing? You never mentioned whether you, yourself, have congenital scoliosis. I'm assuming you do. I hope to be able to share information with others on this thread....'cos I've gotta lotta catching up to do!

Thanks for starting this!......Teri

kippy6 · 03-22-2003, 09:12 AM

Hi Franjo.

I have a 10 year old daughter w/congenital scoliosis. She has a 40% curve that we're still watching. She came real close to getting surgery when she was about 4 yrs. old....

Have you ever heard of Dr. Winter or Dr. Lonstein?

I had a cousin who died from scoliosis years ago. She never received any surgeries to correct her scoliosis. I believe she had a C curve. They lived in West Lebanon, Indiana. She was in a wheelchair from a very eary age. I don't know much about her situation, as I was still in school when she passed away, and she was about 15-20 years older than me. I'm 36 yrs. old now.

dwiatrek · 05-15-2003, 02:41 PM

My 27 month old daughter has congenital scoliosis. She will have back surgery in August to remove a vertebrae in her lower back. Then in January, she will have titanium rib replacement surgery. Does anyone know anything about this?

[This message has been edited by moderator2 (edited 05-15-2003).]

Wislodgers · 06-05-2003, 08:24 AM

We found out 4 months ago that our 3 year-old son has congenital scoliosis in his neck. He has a number of fusions and deformed cervical vertebrae. We noticed his shoulders appeared lopsided, Dr thought he has Sprengle's in his shoulder blade. After xrays and 4 hour MRI scan, they determined he has Klippel-Feil syndrome. He has a good prognosis. He has 2 healthy kidneys(some with KF only have 1 or deformed ones). As of now his spinal cord is no way compromised. He has a 30 degree C curve to his neck. It is a wait and see game. If the curve stays the same, we may have to do nothing. If it changes he possibly will need fusion surgery, which would limit his range of motion in his neck even more. He has almost complete range now, but even 1 more fusion would drastically change that. Doctor said this is very rare. I wish we could find a doctor with some experience with this!