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Experiencing serious problems...

I'm 23 years old with PFFD of my left leg and right now I am experiencing some major issues with my prosthesis. I have had no surgeries, my mother thought it should be my decision and I don't want an amputation. I have been wearing a full length prosthesis, which doesn't bend as my " little leg" sits inside it. I've been getting on well my whole life with the legs, people don't even realise that I have an artificial leg ,they think I just have something wrong with my hip. I can get up and down stairs the normal way. I even walk on my little leg to get around the house to do chors etc, much like an infant would. Anyway, long story short, the leg whcih lasted me a good ten years is done. I can't wear it anymore. Now, here's the real killer. Every new leg that I get made is ill fitting, causes constriction, my foot burns and itches at the same time. I seriously can't walk in them.

I have had to defer my 3rd year of University and right now I have been on crutches for two months as I have no leg to walk in. The people who make the legs are not taking any responsibility what so ever. Oh, did I mention it's been two years of my life that this has been going on for! Not only have they left me to suffer physically but also they've left me psychologically distraught. I have depression now and I guess you could say my life sucks. I'm writing this because I'm hoping it will help. I honestly don't know why the prosthetists' can't make me a comfortable new leg.

I recently saw an Orthopaedic Consultant who mentioned limb lengthening. Since then I have done my research and really want it done. I saw this surgeon again the other day and his attitude was terrible. He said my femur was very short, the muscles are short.... it would be difficult etc. He offered amputation. It's funny I've been offered amputation in the past but in the 20 years of medical advances what I am still getting offered? Amputation! I was so angry and upset that I burst into tears and couldn't articulate a sentence after that. He didn't like it when I mentioned Dr Paley. Probably becasue he is the expert and this guy I was seeing isn't! He said he would need to look at my scans again and talk to others about it. One of them being Dr Paley I hope. That's the impression I got anyway. I don't know what class I am but I really hope Dr Paley can help me. I won't see this guy until next month. That's a long time to wait...


I have a similar prosthesis to yours and can't believe how horribly you've been treated and that they can't make you a leg that is as comfortable as possible. When I had a big growth spurt I had to have legs made every 6 months or so and I don't think they were ever really well fitted, but now every time I have a new leg they take a cast of the foam mould, which my little leg sits in, and make the leg from that as it's the most comfortable one I've had. I can imagine how distressing it is to not be able to have a leg that's not comfortable and having to rely on crutches (I can't believe it's got that far!). I was offered amputation as well and can't say I like the idea either. Have you got in contact with Dr. Paley personally? I wonder if he would have any other ideas different from the doctor you've seen as I don't know if he would contact him, if he didn't like the fact you mentioned him.
If you ever want to chat or anything just email me on here I check it regularly :)

dude my situation is pretty much similar to yours, would love to videochat and sort your scene out. do you use skype or msn?

it's been a while since your story, so I hope your problem has been solved by now
I'm living in Europe, Belgium, so can't be of much practical help, but I can assure you that it's worth while to keep on searching for someone who can make you a good artificial leg!
I'm 44 years old and have PFFD on my left side. I have had no amputation, only surgery to remove the bow in my "knee".
I've had artificial legs till the age of 30 or 35, all made in Belgium. Till I was fed up with them and had the luck of finding a solution in Germany. I even returned to the Belgian makers with the German artificial leg, but they just couldn't copy it. So I stick with the German ones. It is much better now and means a huge difference for me on a daily basis.
I hope you may find or may have found a solution!
I wish you all the best!