kyphosis surgery

[hajjball]

my 15 year old son will be having anterior/posterior surgery for kyphosis on june 21. Surgery will be done at children's hospital in boston by dr John Emans. Sam wore a Milwaukee brace for 1 1/2 years but his curve still got worse. Sam also has a mild form of charcot marie tooth disease. He is quite active...soccer, tennis, baseball. Needless to say we are all quite nervous waiting for the day.

[Mary Lou]

Hi, welcome to the board.

Sounds like we are in the same boat, sort of. My 13 1/2 y.o. daughter had surgery almost five months ago for her Kyphosis and Scoliosis. Jamie wore a Milwaukee brace for a short time. She has an appointment next month with a Neurologist to test her for CMT. Jamie's doctor strongly believes that CMT is an underlying cause of her Kyphoscoliosis. Have you mentioned the CMT to your son's doctor? I'm just curious if the doctor feels that the CMT caused the Kyphosis. Some doctors aren't even aware of what CMT actually is and therefore, they have no clue that the two are sometimes connected. My daughter was seen by five doctors and only the last two even had a clue what CMT was and that CMT, Kyphosis and Scoliosis are connected.

I remember the months before surgery very well. It is a very scary and stressful time. Feel free to ask any questions that you may have. We are all here to help.


Mary Lou

[hajjball]

Thanks for responding. My son was diagnosed with CMT the same time as the kyphosis. We had DNA tests done. He has no reflexes in his lower limbs and limited in his arms. He also has very high arched feet. For the time being the biggest worry is the surgery. How was it? Did your daughter have anterior and posterior? How long was the hospital stay?
It is nice to be able to talk to people who know what we are going through!

[Mary Lou]

Jamie was a kid that sailed through surgery and recovery. She has a very high tolerance for pain, which many kids don't have and therefore they say the surgery was very painful. Jamie was off all pain meds, including Tylenol within two weeks following surgery. She had posterior only. Her surgery was done on a Tuesday and she was home on Sunday. She returned to school 1/2 days four weeks after surgery, but was told she could return at three weeks, but that was the start of Christmas vacation. By six weeks post-op she was back to school full time.

Have you gone back and read any of the previous posts on this forum? We've had many conversations about what to take to the hospital, what to expect in the weeks following surgery, etc. If you don't find what you need, please feel free to ask. We're here to help.

Mary Lou

[Littleone1016]

I think that I've posted this before, but I too have Scoliosis/Kyphosis and severe CMT. I was diagnosed at 8 for all....if there is anything that I can do, or help I can give please feel free to ask. Also, there are certian types of CMT that are known to be associated with Kyphoscoliosis...I think type 3? I'm not positive. Anyhow, good luck with your son's surgery, feel free to contact me.

[brian86]

hey, i had the same surgery performed in july/august 2002 by dr. emans in boston. I was 16 at the time of the surgery and i had severe kyphosis. I tried bracing for about 6 months before surgery but it didnt help. My curve is relatively normal now and i havent had any problems.

As for limitations i personally dont have to many. I played lacrosse in high school 6 months after surgery and the only things dr. emans said i couldnt do were play football (i dont play anyway), skydive or bungee jump (zero interest in doing something crazy ) he also said i shouldnt dive into pools head first but thats no big deal.

If you or your son have any more questions you can email me at harriman714@aol.com, and i can ask my mom to talk you so you can get a mother's perspective on the whole experience.

Brian

[nikyergen]

My 16 year old daughter had kyphosis surgery on 3/15/05. She was back at school part time 3 weeks post-op and started full time last week. She has been on the go since we got her home from the hospital. She was in the hospital for 6 days. She is starting to go nuts because she wants to be doing things, but still isn't allowed to lift and do certain things. She would tell you that her surgery is the best thing that ever happened to her. Her back doesn't hurt any more and she stands up straight and tall. She had an 88 degree kyphosis curve. Crystal only had posterior surgery. She is a very motivated child and didn't stay down any longer than she had too. She was sitting up in bed within 12 hours of surgery and standing up and using the commode within 24 hours. They wouldn't let her walk until she had her brace, which was ready within 48 hours from surgery.

Every child reacts differently to surgery and recovery. Jaime and Crystal seem to have done very well with surgery and recovery. I think Jaime and Crystal could of shadowed each other on recovery. Crystal was off pain meds within a couple of weeks, and only takes an occassional tylenol. Usually, when she has been on her feet too much.

I think Mary Lou and I are both releaved that our daughters did so well with this surgery. Even though we live miles and miles apart, I was glad to have Mary Lou's support going through this surgery. I felt like I knew what to expect and that another child had done so well. The hard part is slowing them down to what the doctors want them doing.

'til later,
Nikki

[Mary Lou]

Nikki,

Thank you for you kind words. I agree with you, Jamie and Crystal are a lot alike and that's why they both did so well with their surgery/recovery. And you are right, it is SO hard to keep her from doing things she isn't allowed to do yet.

Mary Lou