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!



From: Maria Marchese
re: Ulna (arm) Fixator
October 99

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..

E-mail Maria Marchese


From: Kathy Jones
re: Ellis von Crevald Syndrome
October 99

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



From: Dr. Mark Chelmowski
re: Short Femur
December 99

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,


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.


E-mail Val


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