Surgery in 2 weeks fusing C2-L1

[rosem]

My 15 yr old son has Goldenhar's syndrome and congenital scoliosis (2 hemi-vertabrae). He is scheduled to have C2-L1 fused. This seems like an awful lot of vertabrae. Has anyone else had that many fused? If so, what about movement? I am concerned with his ability to bend after fusing that many. Also, has anyone who had hemi-vertabrae and been fused had any problems with the curve still progressing or had good outcomes as well? I don't believe they are going to straighten him completely due to the riskiness of it and I am concerned about ongoing pain from having an "artificial" curve". Any info is appreciated. BTW we are going to Dr. John Flynn at CHOP.

[Christine84]

rosem,

I don't have answers to your questions, but wanted to wish you and your son good luck with the surgery. It is quite rough the first week but each day he will feel better! The two of you will be in my thoughts and prayers.

-Christine

[Carmell]

Hi rosem,

My son is 12yrs old. He has multiple hemivertebrae in his thoracic spine. He had fusion surgery at 11 months old. At age 6yrs old he had VEPTR (adjustable rods). I can tell you that his mobility is not affected very much. He can sit cross-legged on the floor, he can run and jump and roll around like kids do. His only "issue" is that he does stiff somersaults because his back doesn't "roll" with the turn.

Having a fusion as high as C2 will mean the range of motion in your son's neck will be limited. The rest of his back shouldn't be as restricted. Braydon is fused from T5-L1. Again, his body is quite flexible and he doesn't have any physical restrictions.

Dr. Flynn has an excellent reputation. I'm sure you are in great hands with him. I believe he has the patient's well being in his best interest. If you are concerned about specific things, can you contact him and ask the questions? I would hope he (or his assistant) will make sure your questions are answered satisfactorily.

I'm guessing that Dr. Flynn is recommending a large fusion for your son because of the risks of a curve developing above and below the fused area. He won't be able to curve above because there is only one vert left (unless there is a failed fusion area). My Braydon's fused spine is very rigid. The fusion was a success in that his curve did not progress. Because he was so young when he had the fusion done, his spine below his fused area curved. That's one reason he had the VEPTR devices placed. Your son is close to being skeletally mature. The risks of the spine curving below the fused area are not nearly as high as if he was skeletally immature. I also don't think anyone - even Dr. Flynn - can predict the stability of the rest of his spine. Dr. Flynn can look and see if the structure looks stable, but he can't tell you with certainty if it will curve or not. I know of a few kids with Goldenhar, younger than your son. I hope he doesn't have many other medical issues that may complicate a smooth recovery from this very big surgery he's facing. Let us know when the surgery is scheduled for. Also let us know if you have any other questions. Scoliosis surgery is huge. Do you know if Dr. Flynn is going to do posterior only surgery? or will it be anterior and posterior? This will help determine what plans need to be made for recovery, things like that. Good luck.

[rosem]

Thank you!

Thanks for the replies. We had the surgery on Monday Oct 1st. He ended up fusing T1-L4. It went extremely well, Dr. Flynn is an amazing surgeon. We are just dealing with the pain right now . Thanks for all of the help!