Hey everyone, just wanted to update on my visit with Dr. Paley. In case anyone hasn't read my story here's a little summary. I'm 22, have PFFD of one leg and have never had any surgeries whatsoever. I have wore a long prosthetic my entire life. My length difference (more than I thought it was when I first started writing on here) is 10 inches. I did a little research a couple of months ago on treatment and options when I discovered Dr. Paley for the first time. Most of you have probably heard of him but he does lengthening AND the hip and knee corrections that come along with having PFFD. As far as I know, no other Dr. can do the hip and knee corrections... I had my appointment with him on August 7th. I can't even begin to describe it. How DO you describe the best day of your life? I was soo nervous because I assumed he wouldn't be able to help me. He told me that my knee (which is extremely unstable) could be corrected! Not only that but he said it was "a GOOD knee"...easily correctable. I had never heard that from any doctor in my life. EASY? I was amazed. My hip will need surgery also but he can correct both in only ONE surgery. I have scheduled it for January 12th. He also amazed me again when he said that he could lengthen my leg ALL the way. This will probably only take 3 surgeries. THREE! Yes, it's going to be hard, yes it's going to be painful but the pain can be controlled. This is something I've dreamed of my entire life but never thought was ever an option for me. The estimated time it should take is about 3 1/2 years. 3 1/2 years compared to 22 years is NOTHING. It's all going to be worth it. I just wish that January would come sooner! If anyone reading this has never had any prior surgeries (or even if you have) I strongly recommend just making an appointment with Dr. Paley. He's located in West Palm Beach, Fl. It took us 14 hours to get there but it was definitely worth it, of course. I'd do it a thousand more times if I had to. If anyone has any questions or would like to know more about me please don't hesitate to contact me. I'd love to answer questions and I have loved meeting people with similar conditions. I've never had that before and I know that it makes all the difference in the world to be able to relate to someone. If you can't reach me on here my email is babybrunette0819@aol.com. (It's been the same since I was 15...ha) I'll update more when I get more information.
God Bless!!
Julie :)
Comments
Congrats
Hey Julie,
Congratulations on the good news. I had the knee and hip ops done when I was a child but I have PFFD of one leg and I am also a young woman (well 24 lol). Just wanted to ask how are you going to get through the next 3 1/2 years without being able to walk? I mean my knee fusion was unsuccessful and the doctor's over here in England would like to try again but I am looking at 12 months roughly of not being able to walk, and to me that is a lifetime!!! I am so independent and proud I would find it difficult to leave the house without my prosthesis. What are your plans for keeping yourself occupied? And what has made u decide this in your 20's?
Amy
Plans
Amy,
First, thank you for the congrats. :) To answer your question...my first surgery will only limit me to a wheelchair for maybe 6 weeks I think. That is just the knee and hip correction. I will be weight bearing by 12 weeks. I'll be using crutches after the first 6 weeks I'm assuming, probably even sooner. Basically I will be back at work in less than 2 months and I will have recovered after only 3. I will have to wait a year before I have another surgery, which will be my first lengthening. That process takes about 8 months. I believe for the first 4 I will be living near the hospital because it's not practical to fly back and forth for appointments & check-ups during that time. Once the entire 8 month lengthening/recovery time is over I will be back at work again. (I'm fortunate enough to have an employer that will work with me during this time.) That surgery will lengthen all of my leg except for 3 inches. I will wear a shoe lift and wait one last year until I have my last surgery. Then it is the same process. That surgery will lengthen my leg all the way. I will be able to walk on both feet once recovery is over. The total PROCESS is about 3 1/2 years but I will be active and working in between surgeries. I will not be immobile that entire time. The few times where I will be are going to be worth it and even then I'll be able to use crutches to get around. I will be occupied, in between my surgeries anyway. I have given some thought to doing some work from home during the 8 month process but it's really not all that long. Why have I decided to do this in my 20's? Because I JUST found out that I could!! I've never known any other options for me except amputation and when I found out I wanted to do it as soon as possible! It's a miracle for me. It really is. I appreciate your questions, I hope I've answered them. If you have any more please ask!
-Julie
Thanks
Hey Julie,
Thanks for your reply, I hope all goes well for you. Keep us updated on your progress. I have not had any input since I was a child and I am going to see a specialist next month so any other questions I will ask him as it all sounds a little complicated for me lol. If you need to chat about anything while your recovering just send me a message. Good luck with it all.
Amy