Juliemn's blog

Hip & Knee surgery-My experience.

Juliemn — Mon, 11 Apr 2011 20:53:22 +0000

My first surgery to correct my hip & knee was in Feb 2010. (Sorry it's taken so long to update!) The surgery lasted nearly 15 hours. I was in the hospital for 9 days & I had so many plugs and drains in me that I lost count. I was in ICU the first 3 days. My incision starts at the top of my hip and goes down the side of my leg wrapping around my knee. I had to be lifted from my bed to a stretcher twice a day to lay in an oxygen chamber. The first 3 tries didn't work because the pressure in my ears caused too much pain. I had to have an additional surgery just to have tubes put in my ears. It was completely random & completely unexpected. We tried again. Twice a day, 2 hours at a time I spent in that BORING chamber. Sometimes I would sleep, sometimes I would watch TV. The chamber was meant to help heal my incisions.

I remember a physical therapist coming by the room once a day. She got me to sit up on the side of the bed. We started slow. The next day she had me try to stand up on my walker. When I took that first step up it felt like a knife had stabbed me in the hip. (This was the start of my anxiety) I was surprised at the pain, and surprised at myself for crying over it. I usually handle things really well. I was embarrassed & upset that I couldn't hold my emotions back. I sat back down. I started wearing a brace I had been measured for while I was in ICU. It was bulky & I hated it but it protected my fragile leg. The first steps on my walker were from the bed to a nearby chair. By the time I finally sat down I starting having a panic attack. I didn't know why I couldn't breathe and that made me panic more. I couldn't talk to tell anyone what was wrong, but I could cry. I had to start breathing treatments.

Another day one of my drains was ready to be removed. It was a long tube inserted at my hip area that went far down inside my leg. The PA told my sister to hold my hand. I didn't expect it to hurt but he pulled it out fast and I yelled. It burned so bad. I started to build up anxiety about my other tube in my side being removed. It wasn't ready yet but I knew it'd be soon. One day when I was being transferred back to my bed from the chamber, mom was there waiting. I was emotionally and physically exhausted. I started to cry, the more I cried I felt the panic start to set in. I couldn't breathe again. I wanted this to be over. Mom finally got me to calm down. The day came for my second tube to come out. I was scared to death. A different PA came this time. He said "Breathe in through your nose & out through you mouth & on the count of 3, it's coming out." Before he could finish his sentence it was out. I didn't feel a thing. :)

I was finally discharged from the hospital on what I believe was a Saturday. I was feeling better by that time, still fragile but so happy to get out of the hospital. I started physical therapy the following Monday. Geez it hurt. It was a hurt I could handle though, because I knew how great the outcome would be. That's all I was worried about.
I went back to work after being out for 7 weeks. I was on crutches and still hadn't gotten my new prosthetic. It was scary & I felt awkward. It was weeks before I finally got it...& 4 more months before I came off the crutches. Even then, I wasn't strong enough to walk without limping. It's also really hard to adjust to a new prosthetic.

It was supposed to take a full year from the time of my hip & knee surgery before I could go ahead with lengthening but in June Dr. Paley was looking over my x-rays & noticed how my bones had completely healed up! He said if I wanted I could start lengthening that September. (The only thing stopping me was work.) I scheduled my surgery to have my fixator put on for November 2nd. I will write another post about THAT experience next.

I hope this helps give a general idea but I don't want it to scare anyone either. Remember that everyone has a different experience, no one will go through the same things I went through, some will be much better & others may not be. I dont regret starting this incredible journey & I know that I won't in the future. I'm halfway there!

Surgery Rescheduled

Juliemn — Tue, 19 Jan 2010 05:14:30 +0000

Update: My super-hip and knee surgery with Dr. Paley had to be rescheduled because I came down with bronchitis. My NEW surgery date is going to be Feb-18th. I was in Florida last week because a media crew was interested in hearing my story. I did some filming while I was there...big step for me considering my condition is something I really just now started talking about openly. I don't know when or where the video will end up but it's out there. For those of you that don't know, I was born with PFFD and at 23 yrs old have a length difference of 10 inches. I lived my entire life without surgery of any kind. Now that I know about MY options I want to let others like me know that they HAVE options. I've gone a very long time living with PFFD. I know how to live with it and pretty soon I will be going through the journey to correct it, then I will have to learn to adapt to NOT living with it. It's been a very large part of my life for so long. Until joining this site I never realized how many people are actually affected by it. I live in an area where I have never met anyone with my condition. I want to try to answer questions anyone has concerning my condition...I know it can be scary making such a big decision for a child and I hope hearing my story helps ease some of that worry. Most doctor's WILL suggest amputation. 99% of doctors, actually. The question I would ask is...If there is a treatment out there, WHY go with amputation? If this can be corrected (which it can in most cases) why choose to amputate? RESEARCH. Don't stop researching until you find an alternative that you are comfortable with. I personally was never comfortable with the thought of amputation and I was always told that was my only and best option. I was told that lengthening wasn't possible in my case, that my condition was far beyond that. It's not. Apparently...my heart was right and my doctors were wrong. It CAN be corrected and it WILL. There is going to be a LOT of rehab which will be I think, the hardest part. It's vital to proper recovery. When you've lived with this condition as long as I have (even though it's my every day routine) you will still do anything-whatever it takes to correct it, if it can be done. I'm very fortunate to have found an alternative. It's been a long time coming...a time that I thought would never happen but it's here. I wake up every day in anticipation for my first surgery. I have one month to go. I'll update and answer questions as much as I can. Please don't hesitate to ask!

God Bless-
Julie

My appointment with Dr. Paley

Juliemn — Tue, 18 Aug 2009 02:06:43 +0000

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 :)

Continuation of My Story

Juliemn — Sun, 19 Jul 2009 17:50:11 +0000

Hi! I posted the blog a month ago "Summary of my story." I just wanted to update everyone on what's going on with me. Since doing my research a month ago & joining this site I have decided to make an appointment with Dr. Paley to see about leg lengthening. I haven't had any prior surgeries, I just wear a prosthetic now and I get along well, but since hearing about Dr. Paley I wanted to see if lengthening was an option for me. I have made my appointment for August 7th. I will update after my appointment once I know more about my options.

God Bless
-Julie

Summary of my story

Juliemn — Sat, 06 Jun 2009 19:09:08 +0000

I was born with PFFD in 1986. My parents discovered the Shriners Hospital in South Carolina when I was 6 years old. Until the age of 18 that had been been my place of treatment. We had been encouraged to go with amputation. My parents felt even at the age of 6 it was my decision. Of course, at age 6, 7, 8 (every time it was brought up by any doctor) I opted out. The decision to keep my leg wasn't even a question and at age 22 I am still happy with my decision not to go with amputation. I think it was the best decision for me personally, although I know that it may not be for others. The Shriners hospitals have an amazing staff who worked with me to customize the best prosthesis's for me. I have never had surgery of any kind. (Unless you count having my tonsils and wisdom teeth removed, ha) Any doctor I have ever been to has been amazed at how well I get around. A lot of people don't even notice my prosthetic at first. I have lived an extremely normal life and have been blessed to do most of the things that I want to do in spite of my situation. There have been times that have been really difficult, physically, but mostly in my case, emotionally. I have great mobility with the prosthetic I have now (www.fourroux.com) I have a special prosthetic due to the fact that I am not an amputee and so I may not be as mobile as most. I don't see my day to day life as a "struggle" as most people probably would. I have grown accustomed to my "struggles" and am an expert at overcoming them. :) I decided to join this sight in the hopes of gaining the latest information on PFFD, treatment (options) and finding others out there who can relate to me. I would love to talk to anyone who has question's or anyone who knows if there is any alternative (besides amputation) for someone at my age.