My son Robert has recently went through 2nd lengthening process , we are in bone consolidation phase at present. Last week we went for xray on femur to get date for removal of frame only to discover that one of the pins had snapped . This isnt the first time this has happened , a pin broke on removal of last frame. Just wondering if other people experiencing this ? Is it normal?
Just wanted to let people know that our surgeons have set the dates for the next few monthly chats. These dates are December 10, January 14 and February 11. All chats are at 9:15PM EST.
Please contact vbrady AT lifebridgehealth.org for additional details.
I am 54 and found out 2 weeks ago that what I have had all my life is actually called PFFD. I was hospitalised at 15months old for 7 years at Chailey Heritage in Sussex. I had a bone graft at 3years old ( which I understood later had not worked). I was allowed to get a contraption strapped to me that let me walk at the age of 7 or so.
I just found this site, and it looks like a great source of info. I've been lucky enough to know a thirteen year old boy with a congenital shortened femur. He had a symes amputation at a young age, and has used an extra long below knee conventional prosthetic since then. He is a very active boy. He plays basketball and ran track last year.
I'm posting because myself, four other Purdue engineering students, and a prosthetist from Indianapolis designed and built a new prosthetic device for him last year. It is described at our wiki page located here:
I hope the offensive posts are removed....knowing it is likely spam and perhaps has a virus, I hope no one clicks on it.....Not sure how to requesst removal...if anyone knows, please request moderator to delete it asap. Thanks.
My son is 32 years old and wears a Foot in Foot Prosthesis. He had a lenghting (with Dr. Paley) when he was 16, however, he still needs about 5 inchs. He does not want to do the lenghting again and having alot of pain walking. We are looking for a doctor in the Lehigh Valley Pa area that we can see to discuss the Syme's Amputation. We have seen several however, they do not seem to want to discuss this. Maybe because of all the surgerys. I don't know. He is working but is afraid if he does not get some help with the pain, he will have to stop.
I'm hoping someone could help with this information. I'm trying to set up our joint will and was told to add a special section on Olivia's condition, her likes, dislikes, doctors details, etc.
Not quite sure exactly what is expected. Please let me know if you have a format i could use. I'd really appreciate it.
Just a quick note - the next online discussions with the doctors from the International Center for Limb Lengthening will be on Thursday November 12 and Thursday December 10 at 9:15 PM EST. Please contact vbrady AT lifebridgehealth.org for additional information. This is a good place to not only ask the doctor, but also other parents who have been-there-done-that.
OK. I’m really pleased that there are so many kind and inquisitive people out there. But why, when I’m rushing through the grocery store with a full cart and 2 tired little children, would I want to have a long discussion about why my daughter’s leg is short or has a fixator on it or has a cast on it? Today (like many times before), when a passing lady asked what happened to my daughter’s leg, I simply said “She’ll be fine.” (when clearly her leg had been through some trauma since she has a cast) and continued on to the checkout line. Sorry. Just had to vent a bit. I feel better.
