From: Lisette K.
re: congenital varicella syndrome
My daughter is 8 years old and was born with congenital varicella
syndrome.(She caught chicken pox in the womb)One of the consequences
of this is a shortened and weaker right leg with some atrophied
muscle, and no sensation.
We decided to go ahead with a lengthening procedure to start to
bridge the 7cm gap between her two legs.We always knew this was a
complex case but did not quite anticipate the complications we encountered.
This was to be a tibial lengthening. .The frame was extended both
above the knee and to the foot to prevent contractures.After the
operation everyone was pleased with her progress because she
attempted weightbearing and knee bends relatively enthusiastically.
We all commented on how lucky she was not to have the pain normally
associated with the procedure. This however we grew to understand was
also a disadvantage.Due to having no pain threshold she overdid
things ,and was too active.
After a week at home we had our first complication.A pin snapped and
we had to go back in for its replacement.The surgeon now put in a
double ring above the knee rather than the one we had before which
was slightly mobile,and consequently snapped.
This now looked very solid and we were also instructed to move much
less,and rest more which we duly did,however a week later my daughter
was getting out of bed and she fractured her femur.
She made one false movement which she did not feel and the lever
effect above the knee was too great.
We were back into hospital for another operation,to hold the fracture
with an additional ring above the fracture point. We were now
instructed to remain in the wheelchair all the time on discharge!
After a week the surgeon noted that the fibular was healing very fast
and fusing thus causing pressure on the joint with the knee. He had
to operate again to release the fibula and make a new incision into it.
We have now been at home for a couple of weeks and the extension
period has just been completed. School is being tackled in a
wheelchair with the support of all the teachers and school. I know we
still have a long way to go.
Bone growth has been very prolific, and we now understand this is
something that happens to people with no sensation.
We would really love to hear from anyone else who has undergone this
procedure with a leg that has no sensation.
email Lisette HERE
From: Connie Letney.
re: Hip Fixation in 13 year old girl
My 13 year old daughter may have a fixator put on her hip. The ball
of her joint and the socket is deteriating so the doctors are going
in and scrape the bone and socket to get down to healthy bone and the
groin muscle is pulling her leg inward so they have to fix that to
then they are going to put a fixator on her hip .
A doctor in Maryland has started doing this on hips to help the joint
and to get some length back on her leg which is 2 cm shorter than the
other .Her doctor in Galveston saw it done and it is working on other
kids.It will be the first time they have done it in Galveston.
We have to be in Galveston July 3 at 9:00am so they can take
measurements of everything.They said she would wear in for about 3 months.
They are trying this so she can get pain relief and get back to
competing on her horse because she loves that more than anything.She
hasn't been able to in over a year.
A doctor in Hemphill in May of 1999 said she had a pulled quad Muscle
and would take about 6 months to heal.Well 6 months later i took her
to Galveston because it was hurting worse and she had a broke hip and
she had been using all this time it had wore the cartilage and
everything else down .
They had to go in and put a screw in there.Now everything is just
getting worse.She use to run cross country track(she was running 3
miles)playing softball and competing on her horse.
She hasn't been able to in over a year.If you of anyone that can give
her some words of encouragement i would really appreciate it because
she has periods of being really depressed and it would really help
her to talk to someone that has been threw something like this.
I would like to see a picture of one if you have one.Could you please
email me one.
If anyone has a photo of a hip joint fixator please e-mail Connie
(and me to please at the normal address) a copy
E mail Connie HERE
From: Diane Wilson
re: Lack of bone growth
The short version of my 16 yr. old daughter's Ilizarov experience:
she had an Ilizarov applied on Feb. 22nd of this year. It took her
until the end of May to weight-bear due to a lot of pain and severe swelling.
In the middle of May we retracted back to square one as there was no
bone growth. She has since distracted again to the 4cm goal. Today we
were back at the hospital for xrays and there is very little bone
growth in the gap.
Thus, we are now to retract 1mm/day for 7 days, nothing for 3 days,
and then begin distraction again at a slow rate of 1/2mm/day.
My question...has anyone experienced a lack of bone growth?? Any
ideas as to why she isn't growing bone (the surgeon offered no clues)?
At this point the surgeon is suggesting abandoning the Ilizarov
procedure, grafting bone from her hip to the tibia and applying a
steel plate. Is this a bit hasty after only four months?
Kind regards and best wishes to you all.
E mail Diane HERE.
re: Lengthening of right femur
I am considering to lengthen the right femur by about 3 cm to correct
my leg length discrepancies. I have been discussing this with a
number of doctors, and am still a little concerned about the
complications of the IM nail procedure, particularly with the
possible bone union problems of the femur. I have already turned forty.
Can anyone share some of his own femur fixator experience with me.
The fixator will be the monolateral type from Orthofix. I am
concerned about the risk of complications of femur lengthening,
including non - union, knee subluxation or contracture, etc.?
I have a low tolerance for pain. If you have a similar experience
with femur procedure from a patient prospective, I really like to
hear from you.
Your experience will help me immensely to know what to expect.
E mail George (via me) HERE.
re: Multiple fractures Tib & Fib
I had an accident in 1991 (multiple fracture of tibia and fibula) and
was put in a simple cast as a result of which i have shortening of
2.7 cm in my right leg. Now i have severe hip pain (on right side)
and i have been to ur site and i would like to know more about the
Ilizarov technique. If somebody with a similar condition to me has
done please email me back.
The details i would like to know are whether the whole procedure is
painful and being a student i would not want to miss my classes. so
any help will be highly appreciated.
email Shine HERE
re: Club Foot
Has anyone used the Ilizarov method to correct clubfeet? My son is 11
and we are trying to decide if this is the answer to our prayers?
email Ilizarov Enquiry firstname.lastname@example.org