Congenital Kyphosis

[gayle]

Hi! This is my first post here and I am looking for anyone else out there with congenital kyphosis. My 13 year old daughter was diagnosed with this after seeing 3 pediatric orthopedist and 2 pediatric reumatologist and going through physical therapy for the past 2 years. Here curve measures 60 degrees - but that changes based on who is looking at which xray. Vertebra T8-T-12 did not fully segment while she was forming her spine; as she has grown those vertebra have remain fixed on the front side but grew on the back side. One surgeon recomends posterior fusion (this will only stabilize the curve not correct it); he also said that she must be very careful with her activities and not hyperextend her back with force because the area could snap and cause spinal cord injury. Another surgeon states that she is now through growing and her kyphosis won't get any worse; posterior fusion probably wouldn't hold due to the amount of tension the curve has on the posterior side (something to do with physics); anterior release and fusion would be too risky for paralysis. He said she can live her life and do whatever she wants that those verteba are a solid bone mass and probably the strongest part of her body.

I am worried that if she doesn't have surgery she will have a lot of pain as she gets older and that the curve will increase. Anyone out there with some advise?

We are going to Shriner's in PA next week for our 4th opinion. Maybe that will end the tie! :-)

[M.Magudulela]

Welcome to the family Gayle

I'm 35 and have kyphoscoliosis. I had a front and back surgery last year. Things are not so bad after surgery, the main aim of the op was to make space for the heart and the lungs to help with the breathing problems. I haven't used asthma meds since the op so I think the op was not such a bad idea.

I think you're doing the right thing making sure you get more than one opinion for your daughter. I'm sure there'll be people here who can give more good advice, you've come to the right place. The problem most people with kyphosis have, is breathing and pains (this differes from one person to another). I hope you'll find help for your daughter.

Once again welcome!!!!!!

Maria M

[mark]

Hi Gayle :welcome:

I'm glad you have found us. I suffer from Scheuermann's which is a form of kyphosis. A few of the members who suffer the same have had surgery for there's and is a complicated long operation which is more risky and difficult to do in adults. There is always a degree of risk of further spinal injury with any operation however having said that surgical techniques have advanced a great deal over the last few years so Like Maria says if your worried i would get a second opinion. A few members have been tret at shriners so hopefuly if they read your post they may be able to give you some reasurrences

Levels of pain do differ some have large curves with no pain others have small curves with constant pain i think its just the luck of the draw as to whether you get it and to what degree and duration the pain lasts.

I hope you stick around and should you have any other questions ask away and we should be able to help and support you and i hope you get the best and most appropriate treatment for your daughter

Welcome to our wonky world

Take care