Does anyone have any advice, how to choose a doctor, specific considerations, etc. for amputating an affected PFFD leg? I'd also be interested in any recommendations for doctors to perform the surgery.
Tim,
It depends where you live. I live outside of Dallas and Dr. Herring did my daughters amputation and I could not be happier with his work. Now, he works for Scottish Rite which is a childrens hospital so you have to be under 18.
Thanks for the reply. How old was your daughter when she had her amputation? My son is 10 and we're seriously considering it. Was hers just a "normal" amputation? I've read some stories about the Ertyl procedure that make it sound worth considering.
My daughter was only 9 months when we did her surgery, so it was only 7 months ago. She is doing just wonderful and we could not be happier with our decision. They did a symes amputation. I am not sure what the Ertyle procedure is? I am going to have to look it up. If you ever want to talk about it my e-mail is lisa@acquistogroup.com.
Hey there. I was about that age when I had my amputation done. I was between 3rd and 4th grades. I just did a little reading on that procedure and it sounds like the end goal is a weight bearing stump. That's what I have. My PFFD left me without a Tibia at all, so the symes amputation they did left me with my ankle bone fused to my fibula, a very solid platform. 30+ years later I'm still kicking. I have experienced SO MUCH more mobility and ability since getting my fake leg. I'm lucky enough to have a pretty long stump, which gives me a ton of control. I played football my freshman year, was in marching band, had a pretty normal social life thru high school, the whole bit. The doctor that did my surgery has long since retired, so I'm sorry I can't help with that. If the lower half of his leg is long, and he has a stable knee, I think he's got a great chance to do a lot of really fun stuff. When it's time for a leg, be sure to talk to people and find a good prosthetist. If you can find one that is an amputee, even better. The last leg I had made was by one and it's the best fit I've ever had. Good luck to him, be strong for him and keep him well informed. It helped me not be so scared when it was all going on.
-Nick
I don't know if I can help but I had my amputation at 9 years old. From experience of going through the whole amputation and getting a new false leg took such a long time. It effected me as I was old enough to know I was really different from other children so I would suggest that if you are seriously considering amputation then do it now! The older your son gets the harder it is going to be for him adapt and let those nasty comments fly over his head. I live in the UK so I doubt I can help with recommending a surgeon. I hope this gives you a little more insight.
Amy
Sorry for the delayed reply. But thank you for the response. It has helped us get motivated to get the surgery done. We're talking to doctors about it and trying to find the right solution. Did you have a Symes procedure?
I'm not sure what procedure I had done, the only real memories I have are from my later surgeries and I was too young to know the terms. But the surgeons amputated my foot just above the ankle joint and at the same time they attempted to fuse my knee, however it was unsuccessful. I would strongly suggest trying to fuse the knee, I am only 24 but already having issues with my knee joint and surgery will happen in the future, which is really inconvenient (but necessary) as you get older and have a career. I wish you all the luck with your son, and one tip that was used with me after surgery's. My parents always bought me a present so I had something to look forward to once the operation was over. Hopefully your son will not spend as much time in hospital as I did though :-)
My daughter was 13 months old when she had part of her foot amputated. She was fitted with the prosthesis about 2 weeks after her cast came off and she started walking by herself a month later. She is 2 1/2 years old now. For her having her foot amputated at such a young age was the best thing for her. She goes to Shriner's Hospital for children in Greenville, sc. Dr. Westberry has been great with her. He did a great job explainig why she would not be a good canidate for limb lengthening. I do not regret my decsion of having her foot amputated. She gets to do anything that she wants. iIf you have anymore questions please ask.
Tim, I know you are asking about amputation but can I ask where your son is being treated? I don't know his specific condition and I'm sure you have gone over all of his options but coming from a patient with PFFD, who has had no prior surgeries I'd recommend setting up an appointment with Dr. Paley. Has your son had any surgeries before? I'm sure you know about limb lengthening and all there is to know. I just wanted to suggest Paley because he has given me hope that I never have had before.
Hi Julie
My son hasn't had any real treatments. He has been wearing a Mosely type prosthetic device since he was ~2 yrs old. He is a very active boy, plays a lot of sports and gets along fine. But now that he is old enough to help us with decisions he thinks the best option is amputation, and I tend to agree. We did see Dr Paley a long time ago, when he was just about 2 years old. At that time Dr Paley thought the length discrepancy was too much to lengthen. However, I have read your stories and am intrigued by them. Perhaps the lengthening process has improved or Dr Paley has just become more comfortable with it, since you have a 10" discrepancy and he believes he can correct it. That is great!
I will continue to read your stories and wish the very best!
amputation
Tim,
It depends where you live. I live outside of Dallas and Dr. Herring did my daughters amputation and I could not be happier with his work. Now, he works for Scottish Rite which is a childrens hospital so you have to be under 18.
amputation
Thanks for the reply. How old was your daughter when she had her amputation? My son is 10 and we're seriously considering it. Was hers just a "normal" amputation? I've read some stories about the Ertyl procedure that make it sound worth considering.
Thanks again
My daughter was only 9 months
My daughter was only 9 months when we did her surgery, so it was only 7 months ago. She is doing just wonderful and we could not be happier with our decision. They did a symes amputation. I am not sure what the Ertyle procedure is? I am going to have to look it up. If you ever want to talk about it my e-mail is lisa@acquistogroup.com.
good age
Hey there. I was about that age when I had my amputation done. I was between 3rd and 4th grades. I just did a little reading on that procedure and it sounds like the end goal is a weight bearing stump. That's what I have. My PFFD left me without a Tibia at all, so the symes amputation they did left me with my ankle bone fused to my fibula, a very solid platform. 30+ years later I'm still kicking. I have experienced SO MUCH more mobility and ability since getting my fake leg. I'm lucky enough to have a pretty long stump, which gives me a ton of control. I played football my freshman year, was in marching band, had a pretty normal social life thru high school, the whole bit. The doctor that did my surgery has long since retired, so I'm sorry I can't help with that. If the lower half of his leg is long, and he has a stable knee, I think he's got a great chance to do a lot of really fun stuff. When it's time for a leg, be sure to talk to people and find a good prosthetist. If you can find one that is an amputee, even better. The last leg I had made was by one and it's the best fit I've ever had. Good luck to him, be strong for him and keep him well informed. It helped me not be so scared when it was all going on.
-Nick
Amputation
Hi Tim,
I don't know if I can help but I had my amputation at 9 years old. From experience of going through the whole amputation and getting a new false leg took such a long time. It effected me as I was old enough to know I was really different from other children so I would suggest that if you are seriously considering amputation then do it now! The older your son gets the harder it is going to be for him adapt and let those nasty comments fly over his head. I live in the UK so I doubt I can help with recommending a surgeon. I hope this gives you a little more insight.
Amy
Thank you
Amy
Sorry for the delayed reply. But thank you for the response. It has helped us get motivated to get the surgery done. We're talking to doctors about it and trying to find the right solution. Did you have a Symes procedure?
Thanks again
Tim
Sorry for taking so long with my response :-)
Hi Tim,
I'm not sure what procedure I had done, the only real memories I have are from my later surgeries and I was too young to know the terms. But the surgeons amputated my foot just above the ankle joint and at the same time they attempted to fuse my knee, however it was unsuccessful. I would strongly suggest trying to fuse the knee, I am only 24 but already having issues with my knee joint and surgery will happen in the future, which is really inconvenient (but necessary) as you get older and have a career. I wish you all the luck with your son, and one tip that was used with me after surgery's. My parents always bought me a present so I had something to look forward to once the operation was over. Hopefully your son will not spend as much time in hospital as I did though :-)
Any other questions then just ask.
Amy
amputation
My daughter was 13 months old when she had part of her foot amputated. She was fitted with the prosthesis about 2 weeks after her cast came off and she started walking by herself a month later. She is 2 1/2 years old now. For her having her foot amputated at such a young age was the best thing for her. She goes to Shriner's Hospital for children in Greenville, sc. Dr. Westberry has been great with her. He did a great job explainig why she would not be a good canidate for limb lengthening. I do not regret my decsion of having her foot amputated. She gets to do anything that she wants. iIf you have anymore questions please ask.
22 with PFFD
Tim, I know you are asking about amputation but can I ask where your son is being treated? I don't know his specific condition and I'm sure you have gone over all of his options but coming from a patient with PFFD, who has had no prior surgeries I'd recommend setting up an appointment with Dr. Paley. Has your son had any surgeries before? I'm sure you know about limb lengthening and all there is to know. I just wanted to suggest Paley because he has given me hope that I never have had before.
God Bless
-Julie
reply
Hi Julie
My son hasn't had any real treatments. He has been wearing a Mosely type prosthetic device since he was ~2 yrs old. He is a very active boy, plays a lot of sports and gets along fine. But now that he is old enough to help us with decisions he thinks the best option is amputation, and I tend to agree. We did see Dr Paley a long time ago, when he was just about 2 years old. At that time Dr Paley thought the length discrepancy was too much to lengthen. However, I have read your stories and am intrigued by them. Perhaps the lengthening process has improved or Dr Paley has just become more comfortable with it, since you have a 10" discrepancy and he believes he can correct it. That is great!
I will continue to read your stories and wish the very best!
Thanks for the message
Tim