hip dysplasia

[Guest guest]

Hello all-

My 12 year old son with CMT 1A has hip dysplasia. Though not caused

directly by CMT, it was still a result of his having it. The CMT

gives him an awkward gait and scoliosis, which then caused the hip

dysplasia. Fortunately our doctor is familiar with CMT and has seen

this condition before, especially in children in this age bracket.

He will be having surgery and Children's Hospital in Boston on New

Year's eve. They cut and rotate the hip bone to create a better

socket for the femur. The femur may have to be adjusted as well. The

whole thing is held together by screws and bolts which will have to

be removed 6 months or so later. The surgery is expected to take

around 5 hours. He'll be hospitalized for 5-7 days, be home from

school another 2-3 weeks, and on crutches for 2-3 months, probably

getting PT for a while too.

I find this group a great source of information and will be checking

the files section on aesthetisia and drug interaction.

Wish us luck,

Jim

[Guest guest]

Hi Jim,

You and your son must be full of anxiety right now, with just a few more days

until this surgery. I wish your doctors great success in this surgery, with

hopes that it brings your son a brighter 2008 and beyond.

I'm 44. I too have scoliosis and hip dysplasia. I didn't find out I had CMT

until a couple of years ago. As a teenager, in Jr High & into High School, I

wore a scoliosis brace that also covered my hips. The hip dysplasia didn't

cause me a lot of trouble until my 30's. During my 30's the pain grew more and

more severe and significantly limited my activities. Finally, at the age of 38,

I had a total hip replacement. Toward the end, even walking a few steps was

unbearable. I'm so glad I had the surgery. The surgeon said there was a large

area that was just bone on bone. No wonder it hurt. Sadly, it had taken a long

time for anyone to listen to me about the pain. I was dismissed for years,

because I was relatively young for hip degeneration and there was no known

underlying cause.

Doctors are reluctant to do total hip replacement on someone so young, because

the likelihood of having to repeat the surgery in 10-15 years is high and a

repeat surgery may not be as successful as the first or last as long. I still

greet my hip surgeon with a big bear hug every year. I'm so grateful for the

help he gave me.

The advantage that you and your son have is that you know the underlying cause

and your doctors can predict the future degenerative course for your son with

fairly good certainty. It's wonderful that they have found something that has

the potential to change the course of his adult life, eliminating years of

suffering and later surgeries. It's amazing they can do that now. Since this

is new to me, may I ask how they are treating the spine? Does your son also

have to wear a scoliosis brace to prevent further curving/rotating? (Just

curious, if you feel like sharing. If not, I understand. It's totally ok to

disregard the question.)

With regard to my hip surgery, I knew there were risks involved, but I certainly

wouldn't hesitate to do it again. However, I would also be very nervous about

it all over again, as you probably are right now. It's likely going to be a

long week for you and your son, waiting for the surgery. And a very long wait

for you as the surgery is being performed. With all my energy, I send you and

your son my best wishes for a successful surgery and a speedy recovery. It is

my fervent hope that one of the most difficult parental events you ever had to

face results in the best gift you could have ever given him. We anxiously wait

with you, sending your our support and well wishes. Please post again to let us

know how things are going.

[Guest guest]

-

Thanks for your comments. I'm glad the surgery has helped you, and it

makes me feel better about the course we are about to take.

He's actually not having a hip replacement. From what I understand, the

hip bone is being cut in a couple of places then rotated to make a

better connection with the femur. The femur may have to be rotated as

well.

The surgeon said if he didn't have this now, he would have bad

arthritis and have to have a replacement later in life.

His scoliosis is at 10%. He doesn't need a brace or anything, just

watching it for now. The doctor also said the hip dysplasia may have

cause the scoliosis.

Jim

[Guest guest]

Hi Jim,

Thank you for the additional detail. I was not aware that the hip dysplasia

could cause the scoliosis. That's very interesting. I wonder if that means

that fixing the hip dysplasia at this young age will prevent further progression

of his scoliosis? If so, that would be wonderful!

It would be great if correcting hip dysplasia at an early age could prevent

progression of scoliosis and the problems it can cause, in addition to

preventing degeneration of the hip joint and all of the pain/suffering/surgeries

that come along with it later in life!

Hugs of support and best wishes for success to you and your son. Please keep us

posted!

[Guest guest]

Hi Jim,

I'm late with a response, but I will keep you and your son in my

thoughts for a successful surgery. Orthopedic surgery can be very

beneficial, especially in young people. While I did not have hip

surgery, my early foot surgery has lasted a lifetime without any

problems.

Keep us updated on his surgery, recovery and results.

Gretchen

[Guest guest]

My son's surgery went well. He's still dealing with recovery and hasn't

started any physical therapy yet - he's mostly sleeping from the pain

medication.

We had an area of concern with anesthesia and CMT. The anesthesiologist

was really pushing for an epidural, yet in the pre-op they said they

wouldn't do one due to CMT. We wanted to hear the Doctor's opinion. He

decided against it. He had an issue where it took longer for feeling to

come back to the patients legs, with another patient who had CMT. It

was a nerve racking experience. Has anyone had any experience with an

epidural?

Happy New Year,

Jim