Hi, I am new to this site. Did not know it even exsisted. When I first researched about my PFFD there were hardly any information about it. But I am here for anyone to ask any questions. I am 20 years old , so feel free to ask anything.
Welcome to the site. I have not been the best at logging onto the site recently, but thought I should make an effort today (while the kids are upstairs running around).
Our daughter is Lilly. she is 8 and also have Bilateral pffd class D. She has had no surgeries, and she walks around in the home, but uses her wheelchair in long distances like the mall or zoo. she also has crutches and a walker that she uses occasionally.
I'd love to share photos...not sure how to upload them here. I can give you my personal email...contact me and i'll email them over. bjstiern5@bevcomm.net
Yes that would be awesome to see the pics, see when i was btw 1-3yrs old or so very young i had like tow surgeries where they tired to make my bone take but it did not work- see i am missing the smaller bone in my leg , i have no hip socket and my femur bone is smaller, have you heard of HANGER PROSTHETICS?? They were able to make me a leg brace to where i am able to get around though when i was younger , kid i was able to get around almost just as much as the others but now that i am older i am limited but not contained, i get around just not long distances... something to check into, BUT DO NOT GET A KNEE BRACE, that was my first brace and it shoved my bone up in my leg and i almost had to get it amputated........... the doctors where not aware since u kno 1 out of 50,000 get pffds so been going to HANGER PROSTHETICS SINCE THAT HAPPENED WHERE THEY ARE PROFESSIONAL AND NOTHING LIKE THAT WOULD HAPPEN EVER AGAIN. i BEEN GOING THERE FOR ABOUT 20 YRS.
my personal email is leavina@hotmail.com
Hi, I would like to get an idea of the cost of super hip operation and lenghthening, and also duration between the super hip operation and lengthening. Are there extra charges/taxes for patients from outside US? Am from Nairobi - Kenya... Please Help
My daughter, who is almost 14months, has pffd in her right leg. I wanna say she has class c or d too. She has a hip socket but no ball to go in it. SHe goes to shriners where they fit her for a brace and that works wonderful for her. She's such an active toddler! We dont plan of doing any suggeries on her until she can be involved in the decision making. Did you have any type of corrective suggeries?? Im so thankful for this site because it has put me in contact with several people and its great to have a community of support! WELCOME!
my wee boy kenzie is 5months, he has pffd on his left leg is 4inches shorter, goes for mri scan on wed 2feb 2 find out wats gona happen, doc thinks lenghening wont work n will need amputation, they say he will need hip surgery but they wnt know wat wat his hip until scan,so upset bout him gettin put 2 sleep 4 mri dnt know wat il b like when cums surgery,,, doc was honest wit me n said he thinks it will need amputated
Comments
welcome
Hi-
Welcome to the site. I have not been the best at logging onto the site recently, but thought I should make an effort today (while the kids are upstairs running around).
Our daughter is Lilly. she is 8 and also have Bilateral pffd class D. She has had no surgeries, and she walks around in the home, but uses her wheelchair in long distances like the mall or zoo. she also has crutches and a walker that she uses occasionally.
I'd love to share photos...not sure how to upload them here. I can give you my personal email...contact me and i'll email them over. bjstiern5@bevcomm.net
Thanks and look forward to hearing about you!
hey
Yes that would be awesome to see the pics, see when i was btw 1-3yrs old or so very young i had like tow surgeries where they tired to make my bone take but it did not work- see i am missing the smaller bone in my leg , i have no hip socket and my femur bone is smaller, have you heard of HANGER PROSTHETICS?? They were able to make me a leg brace to where i am able to get around though when i was younger , kid i was able to get around almost just as much as the others but now that i am older i am limited but not contained, i get around just not long distances... something to check into, BUT DO NOT GET A KNEE BRACE, that was my first brace and it shoved my bone up in my leg and i almost had to get it amputated........... the doctors where not aware since u kno 1 out of 50,000 get pffds so been going to HANGER PROSTHETICS SINCE THAT HAPPENED WHERE THEY ARE PROFESSIONAL AND NOTHING LIKE THAT WOULD HAPPEN EVER AGAIN. i BEEN GOING THERE FOR ABOUT 20 YRS.
my personal email is leavina@hotmail.com
financial implications
Hi, I would like to get an idea of the cost of super hip operation and lenghthening, and also duration between the super hip operation and lengthening. Are there extra charges/taxes for patients from outside US? Am from Nairobi - Kenya... Please Help
My daughter, who is almost
My daughter, who is almost 14months, has pffd in her right leg. I wanna say she has class c or d too. She has a hip socket but no ball to go in it. SHe goes to shriners where they fit her for a brace and that works wonderful for her. She's such an active toddler! We dont plan of doing any suggeries on her until she can be involved in the decision making. Did you have any type of corrective suggeries?? Im so thankful for this site because it has put me in contact with several people and its great to have a community of support! WELCOME!
my wee boy kenzie is 5months,
my wee boy kenzie is 5months, he has pffd on his left leg is 4inches shorter, goes for mri scan on wed 2feb 2 find out wats gona happen, doc thinks lenghening wont work n will need amputation, they say he will need hip surgery but they wnt know wat wat his hip until scan,so upset bout him gettin put 2 sleep 4 mri dnt know wat il b like when cums surgery,,, doc was honest wit me n said he thinks it will need amputated