Hi! My name is Caroline. My husband Chris and I live in Iowa. Our son, Nash, is 5 months old and is an amazing little guy. We are so in love with him!! Nash has CFD of his right leg and we were first informed of his leg at our 20 week ultrasound. It was a scary and confusing diagnosis. Mostly because NO ONE knew anything about CFD or PFFD. We immediately went online and found some information. Dr Paley's website was very informative, which was so nice since this condition is so rare and there's not much out there. We plan on sharing our story as much as possible in hopes of helping people like us, who came home from the doctor feeling like we did...alone and scared. If it wasn't for Dr Paley and his website, we would not be as hopeful about our son's future as we are now!! I know this will be a long journey but hearing other stories of children with CFD makes me feel not so alone. :) I would love to talk to anyone who has advice or would like to share your experience with us, too! We are at a point, now, where we are trying to decide which Doctor to go to. Dr Paley in Florida, OR Dr. Herzenberg in Baltimore. Most people I have read about have seen Dr Paley. I have talked to both doctors and they seem like wonderful people and have heard they are both amazing surgeons. If anyone has opinions or experiences with either and would like to share with me, I would extremely appreciate it!!
Feel free to email me at cosmocaroline@yahoo.com
Thanks!!!!
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Hi!
Hi Caroline! My name is Nicki. I have experience with both doctors. When I had the Ilizarov procedure done, both doctors worked in Kernan Children's hospital in Baltimore. I was Dr. Paley's patient, but also saw Dr. Herzenberg from time to time. As you said, both are great doctors. My case was extremely difficult because I have bilateral PFFD. I had about 7 surgeries in all. Dr.Paley was great. He is very intelligent and diligent. One of the most important things with the lengthening procedure is preventing infection. Dr. Paley watched all of his patients very closely for this. Each case is personal for him. He performed my last surgery in 1998. When I sent him an email in 2010 just to say hello and thank you, he still remembered me and my parents by name. He's a great doctor that you can trust to do what is best for your child. If there is a complication with the procedure, he will work until he figures out a way to fix it. Even if it means creating a new procedure. His standards for treatment are the highest I've ever seen. If it hadn't been for him, my life today would be totally different. I recommend you meet with him and at least get his opinion on your son's case. He's the best there is.