lengthening

[Guest guest]

Hello All, I haven't posted in many years but I regularly read and absorb all

the great information being passed around and now I have a question for the

group. Has anyone ever had a bone lengthening?

I have CMT and I have 4 kids only one has been diagnosed with CMT and he also

had hip dysplasia so he has had 11 previous surgeries, we just had #12 on

Thursday because after all the hip surgeries on the Right and the knee stapling

the left leg is over an inch shorter. Anyway. I know the surgery was only 3

days ago, but they have been trying to get him up yesterday was a little more

successful because it was from the hospital bed to the hospital chair. Today

however didn't go as well, trying to get into the wheelchair. I was wondering

if anyone in the group ever had the halo/external fixator. I have been doing

some thinking that it (meaning all the metal) is too heavy for his muscles to

handle. My email is annekatz@... I would like to go into more

details but it may get pretty long with the details.

I would love to hear from anyone regarding this, before I speak to the surgeons

tomorrow morning.

Thanks for everything.

Anne Katz

[Guest guest]

Anne,

Since his left leg is shorter, perhaps an orthotic inside the left shoe would

help even him out when walking. Completely un-nvasive and not seen. I was born

with my right hip higher than the left. (apparently 5% of the general population

has this) In school, my shoes were always slightly built up to compensate. Now

my orthotics (each on is different) keep my feet happy and on the go.

Gretchen

[Guest guest]

Hi Anne my names when I was 15 I was found to have hip dysplasia after I

started having severe groin pain, about a month later me and my mom were both

diagnosed with CMT1A. In April of 09 I had a Periacetabular Osteotomy done on

my hip, which is where they cut a piece of my pelvis off repositioned it and put

several screws in to hold it in place, I did not have an external halo, but I

can tell you after my surgery while I was still in the hospital even with out a

halo on my leg it was really hard for me to get out of bed into the wheelchair

or on the commode, and some days I did good with doing things like that and some

days I felt I was taking a step backwards. I think you could very well be

right, I dont know how big your son is but I am sure having that extra heaving

equipment on his leg would be harder, now after the surgery on my left hip the

length of my legs are also off so I still walk with a limp, I've read with hip

dysplasia and CMT after one hip goes the other one usually follows because of

this. Do you mind if I ask what types of surgeries your son has had on his hip?

>

> Hello All, I haven't posted in many years but I regularly read and absorb all

the great information being passed around and now I have a question for the

group. Has anyone ever had a bone lengthening?

>

> I have CMT and I have 4 kids only one has been diagnosed with CMT and he also

had hip dysplasia so he has had 11 previous surgeries, we just had #12 on

Thursday because after all the hip surgeries on the Right and the knee stapling

the left leg is over an inch shorter. Anyway. I know the surgery was only 3

days ago, but they have been trying to get him up yesterday was a little more

successful because it was from the hospital bed to the hospital chair. Today

however didn't go as well, trying to get into the wheelchair. I was wondering

if anyone in the group ever had the halo/external fixator. I have been doing

some thinking that it (meaning all the metal) is too heavy for his muscles to

handle. My email is annekatz@... I would like to go into more details but it

may get pretty long with the details.

>

> I would love to hear from anyone regarding this, before I speak to the

surgeons tomorrow morning.

>

> Thanks for everything.

> Anne Katz

>