Adult progression in congenital scoliosis

[hdugger]

My 22-year-old son was recently diagnosed as having congenital scoliosis (after being diagnosed with idiopathic for the last 5 years). He has a hemivertebrae, maybe some fused vertebrae, and a syrinx. His curves are 63 thoracic and 63 kyphosis.

I feel like I knew what to expect from idiopathic scoliosis, but I have no idea what to expect from congenital scoliosis. Do adults with congenital curves of about this size progress more/less rapidly then those with idiopathic? I know that he's also at risk for disorders in the genitourinary system and heart, as well as being at risk from the as-yet-asymptomatic syrinx. Is there anything else I should be thinking about?

[LindaRacine]

My 22-year-old son was recently diagnosed as having congenital scoliosis (after being diagnosed with idiopathic for the last 5 years). He has a hemivertebrae, maybe some fused vertebrae, and a syrinx. His curves are 63 thoracic and 63 kyphosis.

I feel like I knew what to expect from idiopathic scoliosis, but I have no idea what to expect from congenital scoliosis. Do adults with congenital curves of about this size progress more/less rapidly then those with idiopathic? I know that he's also at risk for disorders in the genitourinary system and heart, as well as being at risk from the as-yet-asymptomatic syrinx. Is there anything else I should be thinking about?

Hi...

I talked to Dr. Berven about this issue last night. He said that congenital curves do not normally progress into adulthood. However, compensatory curves do tend to progress.

Regards,
Linda

[hdugger]

Thanks so much Linda. That's tremendously helpful.

[hdugger]

Thinking about it - so it's kind of like he has a major thoracic curve that's fused (with a very short fusion), and that would have to be extended as he gets older and the compensatory curves progress. I'll pay more attention to patients in that population to get a sense of what his future might look like. I'm hoping the compensatory curves stay under the main fusion. Compensatory curves up in the neck wouldn't be so good.

[kemery1]

keep an eye on the respiratory piece of scoliosis... no one did for me for 20 years, and now I have respiratory/heart problems. Has he had a sleep study? the curve is high enough to maybe justify that.
Massage therapy is a good thing also... I had a 156 curve at age 11, and am 55 now... no real pain, but pulmonary hypertension, on bipap s/t at night (stops breathing when sleeping because of scoliosis) on oxygen 24/7. I've learned you have to stay on top of things... good luck to your son...


My 22-year-old son was recently diagnosed as having congenital scoliosis (after being diagnosed with idiopathic for the last 5 years). He has a hemivertebrae, maybe some fused vertebrae, and a syrinx. His curves are 63 thoracic and 63 kyphosis.

I feel like I knew what to expect from idiopathic scoliosis, but I have no idea what to expect from congenital scoliosis. Do adults with congenital curves of about this size progress more/less rapidly then those with idiopathic? I know that he's also at risk for disorders in the genitourinary system and heart, as well as being at risk from the as-yet-asymptomatic syrinx. Is there anything else I should be thinking about?[/QUOTE]

[hdugger]

Thanks Kemery, that's really helpful.

He had sleep apnea as a teenager, but that was due to his enormous tonsils. Once those were removed, his breathing at night was fine. But we're definately going to stay on top of the heart/lung stuff.

Did you have a fusion as a child?

[cocolaloca]

The fellow who followed our son for years and years forgot to x-ray his entire back as he grew. His hemi was in his waist area. Thanks goodness we got a second opinion just prior to surgery as the second doctor discovered that our son also has a pelvic tilt. Therefore, excision or fusion would have not have eliminated a curve! His curve is in the high 40's (degrees) and he is almost 19 years old. It doesn't seem to have gotten any worse in the last few years but he must deal with pain as the disks are pushing into the nerves. When the pain is too bad he will be fused from about waist level to his sacrum. He got through high school sports (no collision sports/positions after 9th grade) and continues to be active in college. He finds that an inversion table helps with the pain but since he can't fit one in his dorm room he uses gravity boots (remember those?!).

Just wondering if anybody else has congenital scoliosis with pelvic tilt and also wanted to alert others to the possibility of having both.
Thanks.

Also, he has a congenital heart defect (VSD with some backflow) but does have both kidneys.