I'm 26 and have PFFD of my right leg. I am going to attempt to make a long story short -- I went to Shriners until I was about 21 where I had all of my surgeries. I had a handful of hip surgeries to build me a ball and socket. I broke some plates, and pins, and screws, but it was eventually successful-ish. Also, I had four lengthenings (three times on my femur, once on the tibia). I don't remember how many centimeters in length I got, but I do remember the doctor telling me "all together that equals about 13 inches".
I broke my femur once when I was 12 by rolling over in bed the day I'd had the illizarov removed. The bone hadn't hardened enough and it just bowed (this left my femur pretty crooked). I also dislocated my hip, knee, and almost my ankle (they ended up cutting some muscles to prevent it). All as a result of too much lengthening too quickly, not allowing the muscles to keep up, causing joints to contract.
After the knee contracted, a doctor in Portland, OR, Michael Aiona, attempted to repair my knee using the illizarov frame to pull it into place and by breaking bones and realigning them. This worked, but once the frame was removed my knee contracted once again. Since my last surgery I have fallen and broken my my tibia and femur, but was put in a cast and healed both times. Each time leaving my bone a little more crooked.
I didn't see a specialist again until yesterday. For a few years, I just wanted to be left alone, not cut on or messed with, so I made no attempt to find a new doctor after I had become too old to go to Shriners. I can walk with a brace. I have pain and I limp, but I can walk and have been able to work, drive a car, etc. So, I wasn't in a rush. It wasn't till a year ago that I started looking a specialist. I have medicaid so it was very difficult to find anyone who would accept my insurance. Yesterday, I saw Dr. Jewett in Eugene, OR for the first time.
Apparently, what's going on in my leg right now is not pretty and is not easy to work with. My hip is dislocated and has dug a hole into my pelvis (the hip pain is what got me to start searching for a doctor in the first place). And because of all the breaks over the years, I have very misaligned bones and osteoporosis, making joint replacement risky and difficult. And my knee is bone on bone at this point, and only bends and straightens slightly. Like I said, I walk, the brace helps, but I am still in SO MUCH pain. I don't sleep, I don't get a lot of exercise, and I'm a grumpy girl.
My doctor told me that he can possibly replace my hip, though it would be very risky, but will not touch my knee. He told me to contact Dr. Paley in FL.
I have Oregon Health Plan, which I'm sure will not pay for this world class doctor (Paley). Does anyone know of any programs for people who cannot afford to see Dr. Paley? I have really no idea what to do at this point. Is there anyone out there in my situation? Any ideas? I don't even know how I would afford to get to Florida, or pay for a consultation. Has anyone out there seen Paley for anything besides lengthening, like joint replacements? Are there any adults out there who are patients of Paley?? I'm stuck.
Also, I'd love to speak with any adults with PFFD. Share stories.
I thought life was hard as a kid with PFFD, I never thought about what I would do as an adult without the help of Shriners Hospital!
If anyone has any info, advice, anything... please share! I would greatly appreciate it!!
Thanks for reading!