Hi everyone,
Can't believe I found this site. It's been so long now. My daughter was born w/ PFFD 23 years ago. She's had several lengthenings as well hip reconstruction twice to the right hip and also knee reconstruction, she's had an ACL added, yada, yada, yada.
She was one of Dupont's, Dr. Bowen, (whom we totally adore!) most difficult lengthening patients b/c her discrepancy was considered very big at that time. I believe it probably still is. She was lengthened 24 cm, if I remember correctly.
Anyway, as most of you know, it's either that or amputation and her father and I decided that since she had to live w/ the outcome, we and doc would explain everything to her in great detail and allow her to make her own decision. She was in fact quite young at the time but let's face it, life had already been quite difficult for her by then. I'm not sure what to think but in my heart, I believe she chose the rougher of the 2 roads. The lengthenings were very painful and the surgeries have been there popping up every few years and our understanding is that this will continue for the rest of her life.
Today, she is a graduate of Fordham University and will be attending Grad school w/i the next year. She is truely one of the most amazing people I have ever know and as her mom, I can honestly say that I've learned so much from her!!!
She continues to walk w/ a major limp and of course her leg looks as if it's been chewed up by a shark. (That was what she would always respond when kids would ask what happened to her leg). She suffers from arthritis and major back problems but we continue to cross each path as it comes.
I am very happy to be here and look f/w to getting to know everyone of you beautiful people who have had to struggle w/ PFFD!!
Comments
Me too!
Hi! I'm 31 and have BPFFD. I was a patient of Dr. Bowen at AIDI in Wilmington, DE from the ages of 9-21. Before that, Gene McKeowen (sp?) was my doc from 14 months to 9 years.
I had a leg lengthening of a little more than 3 inches when I was 11, way back in '87. If my memory serves me correctly, I believe I was the 4th or 5th lengthening done at Dupont.
Hi lindamo!
Yep, we know McKeowen as well. But Dr. Bowen was w/ the entire 21 yrs there!!! Her lengthening's started in '90's. She spoke to alot of patients prior to starting and/or I'm sure you were back for f/u's millions of times, no??? Maybe, we've met. I felt like we lived there. Anyway, how has everything turned out for you? Did you do ok w/ it? Oh & also, do you have children? I worry about her carrying during pregnancy (if ever) but then again her's was really a big discrepancy. Her foot sat just below the knee of the opposite leg. Have you heard anything of the chance of her children also being born w/ PFFD? I need to talk to him soon but towards one of our last surgeries, I could swear he told us they recently learned it was genetic..... She does have a cousin (younger) that was also born w/ it, went to Dupont for lengthening, his difference was about 3 inches, like yours.
Anyway, it's a pleasure to make your acquaintance!!!!
m
Likewise
Hi, M. I'm glad that we could connect.
I do not have any children, and to be honest with you, I don't want any. :) So, I really can't help you out with the pregnancy questions.
Also, there are some significant differences between those with unitalteral PFFD, which it sounds like you daughter has, and those with bilateral PFFD, which is what I have.
I truly believe that if my case were presented now that I would not be a candidate for lengthening. I have complete absence of my left hip joint, which is the side with the length difference. Neither my knee nor my ankle joint on that side has ever been stable, either.
I had a host of complications from my lengthening. First, the lengthening never actually evened out my legs because of how my left femur pushes up when I weight bear on that side. My left foot completely turned in and rotated. When I was 14, Bowen did a triple arthrodesis of my ankle. My knee is also messed up now. When I was 27, I slipped on ice and fell, breaking my left ankle. The break undid the arthrodesis in 2 of the three places, and I now have pretty severe osteoarthritis in that joint, as well as in my left hip (which may have happened anyway, with or without the lengthening). Now, I walk with a shoe lift again, wear a leg brace and use forearm crutches to get around. I do use a wheelchair for longer distances. As long as I'm wearing my brace and a shoe with a lift, I can walk a little without my crutches. I tend not to use them all the time around the house or in my classroom, but I definitely pay the price if I do too much without them.
I have heard nothing about PFFD being genetic. As far as I know, it's just one of those weird things that happens during gestation. No one else in my family had or has this disability.
Hey lindamo
Gosh,
I'm sorry to hear about the troubles that you're having but I have to be honest w/ you, I see what my girl goes through every day and it breaks my heart. She's a very hard worker and basically her office is her car. On the road all the time! She doesn't live home w/ us anymore but sometimes she stops for a quickie massage b/c she's in so much pain. I'm afraid that all you speak of will also be part of her future. Her hip pushes up as well. Her legs are not even, her toes get stuck in crampped up position that is very painful & only time and slow massage eventually alleviates. And there's constant knee, ankle, hip & back pain. Just today she called from the road saying that she thinks she's starting to get a hunch back??? Well, I suppose anything can happen. It's always been so tough on you kids. I guess, like always, all I can do is pray.
Thank you for responding.
M
Hey, M
Wow, I must have been having a rough day when I responded to you. I realize how negative my post seemed. Don't get me wrong, some days it absolutely sucks having this disability. However, I would say 350 out of the 365 days of the year are manageable, even with chronic pain.
I'm glad to hear that your daughter is managing her pain most of the time and that she's an independent young woman. I imagine that's all that any parent wants for his/her child.
Take care!
pffd and pregnancy
M:
My Dad had unilateral PFFD. Your description of your daughter's leg sounds almost identical to my Dad's leg. Obviously, he wasn't ever pregnant, but he had 4 children, 8 grandchildren, 6 nieces and nephews and 17 great nieces and nephews, none with any limb differences at all. If there is a genetic component to PFFD, it hasn't continued in our family. Maybe some cases are genetic, and others are just a random gestational thing?