Olivia had her appointment with Dr. Paley last week. This was the first time for us to personally meet him. His schedule was really tight and he was only able to meet with us for a short time, but overall we were very impressed with him.
Olivia had some x-rays taken earlier that day, so he reviewed those and then examined her. He told us that Olivia has a good hip, knee, and ankle (that was a comfort to hear), but all of them are not formed correctly. He confirmed that she needs the Super Hip/Knee surgery to correct her hip and knee. Then, he told us that they can perform an operation on her ankle to keep it from turning out to the side. (She has fibular hemimelia.) I didn’t know they could fix her ankle with an operation, I thought she would have to wear a brace of some sort to keep it straight. He said they usually perform the ankle operation at about 18 months old and the hip/knee operation at 24 months old. Each operation has a 6-week recovery period. Since Olivia needs both operations, Dr. Paley recommends combining both operations into one. Her recovery period for this operation would still only be 6-weeks. Amazing! If we go this route, she needs this operation when she is 24 months old. That would put us in June. I was planning on a March operation for her, so I asked him if we could split the difference of 18 and 24 months to 21 months. He said No to that. His reason was, since she’s small (25th percentile in height and weight) she needs to be as old as possible (and as big) in order for them to have more to work with during her surgery. … My husband and I have since decided to go ahead with this surgery when she is about 24 months old. We will call later this year to schedule that operation.
After talking to us about the hip/knee/ankle surgery, he immediately told us that at about age 4 Olivia would get her first lenghthening, at about age 7 or 8 she would get her second, and after her second they would see how many more she would need. I’m pretty sure he said that very rarely more than 3 lengthenings are required. His time was running short during this part of the conversation, so I didn’t get all of my questions answered. I plan to email him to get them answered. But what we got out of it was that he believes Olivia is a good candidate for lengthening. He didn’t even mention another treatment option, such as Van Ness or amputation. He made us feel so confident in his abilities with lengthening that after her appointment we have officially decided to have her treatment method be lengthening. We decided not to wait and see how her hip surgery went to make that decision.
At the end of her appointment, Dr. Paley gave Olivia a prescription for a prosthesis. I have since made an appointment with a local prosthetician at CHOP in Philadelphia. Her first appointment is on September 15th. They say it takes about 3 to 4 weeks to build the device and get insurance approval, so we’ll probably get to bring it home in early to mid October. I asked Dr. Paley if she needed physical therapy once she gets her device. He said that he didn’t think it was necessary. She would be able to figure out how to use it by herself (with our help of course.)
After Dr. Paley got a chance to thoroughly review her x-rays, he calculated her length discrepancy at maturity to be about 34.1 cm (13.4 inches). Previously, we were told her length discrepancy at maturity would be 46.2 cm (18.2 inches). I’m thrilled! That’s about 5 inches less than what we thought.
Until next time.
Beth
Comments
Dr. Paley
I read your comments about your Daughter Olivia. I am excited for you that you chose Dr. Paley. My husband has a rare condition where his humerous is shortened by 11.4 centimeters from an injury just after birth that broke his arm at the growth plate. All other Dr's had said he would need amputation as he got older and that there was nothing they could do for his arm and he had to live with the pain and inability to use it. Unfortunately its his right arm and he is right handed so every day tasks have always been so difficult for him. I was surfing the web and found Dr. Paley and just as you had mentioned he was confident about the limb lengthening. We had no idea it was even a possibility. To make a long storey short he squeezed us in and My husband had his surgery three weeks ago and is doing very well. He has an llizarov External Fixator. So far he has achieved 1 full inch of growth, only three more to go! He is so happy that Dr. Paley changed his life for the better. He had prevously went to Stanfords Childrens Hospital in Los Altos when he was 13 and they butchered him and put a pin in his arm which restricted his motion so severly he was always depressed about it until now. He was so afraid to ever go back to any doctor. To make matters worse, Dr. Paley is a whole world away since we live in California. But we made the decision and Dr. Paleys surgery was so successful for him. Now at 33 he can finally raise his arm above his head, even only 24 hours after surgery what an amazing thing to see. We wish you the best with your daughter Olivia, although I know it will be even better than you had imagined as Dr. Paley is a miracle worker.
~Jeannette Martin