Hello. My name is Shalonda. I have a 19 month old daughter with pffd. her left femur is shorter than the right. there is about a 4 inch difference. I'm having a little trouble with decision making. She has not had any surgeries yet. The only thing the doctors are talking about is amputating her foot. I was just hoping that maybe they could do something else, like maybe lengthen it enough to where she could wear a shoe lift? So now my husband and I are faced with the decision of cutting off her foot, waiting to see if they will come up with something else or just wait and let her decide...
Comments
Options
I assume you are going to the Shriners? I would STRONGLY recommend a second and third opinion. One should be Dr. Paley.
Try Lengthening
With a four inch differance i'm sure lengthening is a posibility. You should at least speak with Paley at Sinai.
I agree....
Dear Shalonda,
You definately should seek a 2nd opinion. The 4" difference you see right now may increase as Skyler grows older, and there may be other things involved with the knee and hip that need to be looked at to make sure no harm will come to those areas as she starts walking around. As the other 2 posts said you really want to atleast send some x-rays to Dr. Paley and his staff. Their phone # is 1-800-221-8425. Please keep us posted on your progress!!
Sincerely,
Chuck
Helpful??
Have any of our VERY similar response been helpful?
I personally had my foot amputated. (I was treated before leg lengthinging.) I know my parents and I never felt like they were given real choices or a complete picture of the treatment. I was treated at Shriners-St. Louis (1973-1992).
Foot amputaion?
I was born with pffd in 1952 and they didn't even have a name for it at the time. The only choice at the time was amputation of the foot or no amputaion. My parents waiteded untill I was 10yrs old and let me make the choice I went for amputation and have never doubted that I did the right thing. The only problem that I've had is that with out knee fusion (that they didn't offer at the time ) is that now that I'm older(55) my knee has turned in more and is now in my grion area.I wish you good luck.
Take Your Time
Dear Shalonda,
You definately should seek a 2nd 3rd or even 4th opinion if you need to. Keep copies of all your x-rays and carry them with you like your bible to every doctors office and get them back. A 4 inch difference may seem minor now, but you need to consider the growth of your child. Her left leg will probably not grow at the same rate as her right so the 4 inches you see now could be 6 inches by the time she is 5. Plus as with most PFFD kids your not just talking about a shortened femur, there are typically knee and hip problem associated with it. When my daughter was born I automatically thought lengthening was the way to go. I sent my x-rays to Dr. Paley and had him give his opinion. He didn't think it was the best option for us and I'm happy I at least saught his advice. I suggest you do the same. Several doctors after that suggested we amputate her foot but we didn't do that either. We had the Van Ness Rotation Plasty at Shriners in Portland. Making this initial dicision was the most difficult for me but I'm glad I took the time to get every opinion available to me before I set my mind on what to do. Good luck to you and your family. I'm sure whatever dicision you make will be the right one.
God Bless,
April