PFFD VSG2 - Surgeries and Hospitals

Hip and knee replacement and quadroplasti in one???

rebeccahadams — Tue, 05 Mar 2013 04:22:20 +0000

Had anyone had all 3 in 1 or atleast 2 in 1?!?! I am scheduled to do all three in June and need to talk with some people first!

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Surgeries and Hospitals

dealing with pffd.

shannon909 — Wed, 16 May 2012 19:37:07 +0000

Hi my name is shannon. I am 21 years old and I have pffd. we I was 7 I had my first lengthing surgery and of course it was scary. there was a problem with my bone harding to fast so that surgery didnt work very well. the doctors than had decided to amputate and the day before my surgery my doctor came in and had said I am so sorry I cant take this girls leg. He said I have another idea and he procedded to say that no matter what my knees would never be in the same place whih is true if he amputted my leg. He than said how about we lengthing the tibia since it didnt work on the femur. and thank god that it worked! I stayed in the hospital for 6 months while they turned a screw everyday that streched my skin muscle and my bones apart and I did physical therapy everyday to make sure I didnt loose mobility in that leg and it worked amazing. I later at 16 had another surgery and this time they tried the top. this time it worked. I put 13 cm on my leg that time and was in the hospital for a year and a half on and off it was so worth it though. It might have been alot of pain but it was something that at the end made me happier than ever. everyday I went to school people would point and laugh at my big shoe and so I wanted it to change and so I worked hard everyday! Shriners hospital for childern hanged my life. after I did all my lengthing I fell and I had broke my leg and they had put pins in and it wouldnt heel they had asked me if I would do the surgery to have a bone graph to try and fix it and so I did and it heeled and I still have my leg. I deal with alot of pain in my leg and in my hip and there is no doctors around here that know much about pffd. if anyone knows of a good doctor that knows about pffd in the lakeland florida area please let me know.

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Surgeries and Hospitals

Limb Reconstruction in the UK?

YvoDivoDiNozzo — Mon, 08 Aug 2011 14:25:57 +0000

I was wondering if there is anyone in the UK has had experience with the Nuffield Orthopaedic Hospital in Oxford? It looks quite good in terms of limb reconstruction and prosthetics for PFFD. I need to be transferred from Scotland down to England for specialist help. I'm wondering if it's the next best thing after Dr Paley, especially for those of us who can't afford the surgery in the USA.

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Surgeries and Hospitals

Help..bilateral above knee amputation outcomes?

shanna — Thu, 02 Jun 2011 22:09:21 +0000

My five year old son, Cai, had bacterial menegitis as a baby and it caused a lot of tissue damage in his legs. We had multiple skin grafts and a muscle removed from his lower leg when he was recovered from his illness at Shriners Hospital in Cincinnatti. Since then he has been seen regularly at Shriner's in Lexington to monitor the development of his legs. X-rays from early on showed that his bone growth plates in both legs were severly affected by the menegitis and the head of his femur bones have failed to form correctly. He is extremely active and in kindergartin but it has become increasingly painful for him to do all of the things he would like to do. The doctors at Shriner's have recommended bilatteral above the knee amputaion with knee fusion and suggest a Boyd procedure. They consider him to have PFFD because of how the menegitis affected his growth plates in his legs. He is, at age five, at least 6 to 8 inches shorter in his legs than his torso size indicates he should be. I am struggling very hard with this decision and have been researching options as much as possible. I have read a lot about Dr. Paley and have made an appointment for a consultation with him in September. If anyone can share any advise on outcomes of this type of bilateral above the knee ampuation and also the lengthening process so I can get a better idea of the different challenges either procedure can hold, I would really appriciate it. The doctors at Shriner's have told me that the earlier the amputation is done the better chance he will have at adjusting fully to the prosthesis and learning to balance. Cai is very strong and active and I just need more information to help make a decision that will allow him to have the most functionality possible.

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Surgeries and Hospitals

Hip Replacement Surgery

SiddaRae — Mon, 11 Apr 2011 23:30:38 +0000

I'm 29, in Phoenix AZ and have PFFD. I have been looking for a doctor to start my procedures, and I've done a bit of research. I have looked on the internet ( http://en.wikipedia.org/wiki/Hip_replacement ) and found a doctor who looks to be excellent. Dr. Kozinn with Scottsdale Joint Center ( http://www.scottsdalejointcenter.com/Services/Total-Hip-Replacement.aspx) has excellent reviews and new technology. Does anyone have experience here with him?

-Sidda

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Surgeries and Hospitals

Surgery

ktackett26 — Mon, 03 Jan 2011 22:08:54 +0000

My daughter will have to have another surgery this year to fuse her knee to the bones in her lower leg and try to stablize her hip. I am just wondering if anyone else has had this done and if it has helped. I do not want to put her through the surgery if it is not going to help. She is 5 so it will be different than when she was 15 months and had surgery. I would appreciate any advice you all can offer.

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Surgeries and Hospitals

what to expect after super hip super knee surgery

amayasmomma — Mon, 15 Nov 2010 02:04:39 +0000

Our five year old will be having her first surgery this upcoming January. We weren't expecting it until much later. In fact the last doctor she was seeing took a "wait and see" approach and didn't recommend it until she was ten years old. We just met with a new orthopedic surgeon who is familiar with her condition. He recommended the super hip/knee in January followed by a lengthening at about age six.

We are are trying to adjust and prepare as much as possible. But little information is out there, and we have only a few weeks before the surgery. I have read several posts on this site and found them very helpful. I'm wondering if anyone has had a child undergo it at this age. How did you handle toileting? Is it crazy to plan on her attending school? How about clothes? Do you recommend a wheelchair? or walker? or anything else that helped? Several people mentioned bean bags, is that because couches are not comfortable? What about when were at home, should we plan for her to be mobile or sitting most of the time? What about car seats, does she need a special one, or will her booster do fine?

Any other practical information would be helpful. I'm having a hard time picturing what life will be like day to day. Thanks in advance,
Martha

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Surgeries and Hospitals

Looking for Medical advise & Help

lola — Tue, 26 Oct 2010 06:37:20 +0000

I gave a birth to little cute boy last july 2010 with PFFD and FH. I consulted many Doctors here in my region and worldwide..........to see what could be done for him..... each one is telling something different than the other ....... I found very nice ortho-pediatre "Prof" here in Dubai but the cost is very very high and medical insurance doen't cover the birth defect.....

Please help me to find some insurances that cover the case or hospitals that can do it for free or a partial payment. I don't mind to travel anywhere

Thanks.......

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Surgeries and Hospitals

To Syme's or Not to Syme's...

BeautifullySo_Disfigured — Tue, 27 Apr 2010 19:10:01 +0000

Hello everyone! My name is Megan and I'm a 20 year old university student from Iowa. Currently, I have a big decision to make and was wondering if any of you could give me some input. I have never had to have surgery to correct any aspect of my affected leg. I currently wear what is described by my prostheticist as a "clam shell" prosthesis-fiberglass, with a door fastened by velcro- and it had been working quite well for the first 18 years of my life. I lost a lot of weight very quickly when I was around 17 and my prosthesis was no longer fitting correctly; I ended up with a nasty open wound on my shin...trying to fit my prosthesis after I lost weight was a nightmare. It took 2 years and going through a new prostheticist before I was finally able to be comfortable again. During that long process Nick, the man who makes my prosthesis now, mentioned how much easier it would be to fit me if I didn't have my foot and ankle to work around and he told me about the Syme's amputation. I was very intrigued by the prospect of not having to go through a 2 year fitting battle again, having a more aesthetically pleasing prosthetic, being able to wear all sorts of new shoes, and being able to maybe be even more active than I already am. I had a consult recently with my orthopedist who basically told me that he would do the surgery if I was sure it was what I wanted to do. I guess I'm just scared. I do not want to make a decision that I will regret. I am very active, I like to be out and about and very social. I'm very involved in the alternative music scene, a lot of my close friends are musicians that play in national or international touring bands and I travel constantly to see them so my mobility is crucial. If any of you have had this amputation is there anything you would want me to know...anything you wish you would have known going in?

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Surgeries and Hospitals

The amazing work that Dr. Paley and his team are doing in Haiti

mariuca — Wed, 17 Mar 2010 18:15:12 +0000

http://paleyinstitute.wordpress.com/2010/03/17/team-paley-day-2-in-haiti...

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Surgeries and Hospitals