From: Twyla
re: Achilles tendon tightness & cleaning pin sites
October 99
My 12 year old daughter has an external fixator that does the same
kind of thing as the illizarov but does not involve the rings.
It involves the tibia and the total lengthening goal is 7+ cm.
So far we have lengthened to 5 cm in 11 weeks. We have slowed down to
.5 mm/day because the achilles tendon is becoming very tight.
Has anyone else experienced this problem? Tomorrow she will be
receiving a tension brace to wear at night that will put constant
pressure on her foot to stretch the tendon. She is unable to put her
ankle at 90*, typically it is at a downward angle at -20*.
Also, I am curious as to what other people are doing for pin care.
All we do is swab the pin sites with a Q-tip soaked in hydrogen
peroxide. We then wrap gauze around the pin because this keeps it
more comfortable, but she has had several pin site infections which
require antibiotics.
Thanks for any info!
Twyla
E-mail rvlgoblue1@aol.com
From: Maria Marchese
re: Ulna (arm) Fixator
October 99
Hi,
I recently had an ilizarov fixater put on my left ulna, I was born
with a radial club hand. I also had an osteotomy.
The goal is to straighten, and then legthen the arm. I am just over
two weeks post-op (10/7/99) and have already dealt with quite a few complications.
I was prepared for this and Im sure there will be a lot more to come,
however I am having a difficult time with the adjustments, the muscle
spasm nearly cause me to pass out at times,
I would like to know of any suggestions to deal with the
complications, or any other personal experiences you could share.
How long will I need these pain killers? I am also finding very
little information on the arm fixator wearers.
thank you..
Maria
E-mail Maria Marchese
From: Kathy Jones
re: Ellis von Crevald Syndrome
October 99
Hi,
My name is Kathy Jones.
I have a six year old daughter,with Ellis von Crevald Syndrome, that
will be having surgery on October 27th, to straighten her legs, then
restucture a deformed growthplate in her knees.
She wll be wearing a fixator for about 12 weeks.
Iam very neew to all of this and wanted to know if I could get
suggestions on how to care for..etc.
I know that along with this comes alot of pain and quite honestly am
having second thought about putting her through this.
I would love for you to be able to help me, possibly even give me
other parents email addresses.
Thank you very much,
Kathy Jones
E-mail KJones7838@aol.com
From: Dr. Mark Chelmowski
re: Short Femur
December 99
Hi!
Our 8 year old daughter has a congenitally short femur and lower leg.
The discrepancy has been increasing every year and is now 5 cm.
An orthopedist at our Children's Hospital in Milwaukee, Wisconsin
suggests proceeding with a femur lengthening next year.
My questions are:
We like this orthopedist and he has high recommendations but he only
does 3 or so of Ilizarov procedures a year. Should we travel to find
someone who does many more?
Does anyone have any advice in helping our active 8 year old daughter
through this? We are told the device might be left on for 6 months
total, shooting for a 5 cm. lengthening.
Thank you,
Mark
E-mail Dr. Mark Chelmowski
From: Val
re: Posteromedial Tibial bowing
December 99
My 2-year old daughter was born with posteromedial bowing of the tibia.
It is a very rare birth defect that causes her right tibia to be bent
forward and out to the side.
Our orthopedic surgeon says the bend will self correct almost all the
way. However her leg will be shorter. So, she will have to have this surgery.
I'm trying to find someone else born with this birth defect to see
what complications they had.
Please let me know if you have heard of it. We live in the USA.
Thank you.
Val
E-mail Val