Last week, Shane, Daniel and I flew to New York City for the week. Shane worked for three days at Barclays Capital NYC office and Daniel and I explored the city (including Times Square and the sand pit in Central Park - see photos).
On Thursday morning we drove down to Baltimore to visit Dr Dror Paley at the International Center for Limb Lengthening.
On Thursday morning we drove down to Baltimore to visit Dr Dror Paley at the International Center for Limb Lengthening.
Dr Paley estimated that Daniel's right leg will be 29 cms shorter than his left leg on maturity. He is confident that he can successfully lengthen Daniel's leg. This would require surgery on his hip at about 3 years of age followed by three stages of lengthening at 4 years, 8 years and 12 years of age gaining about 1 cm from the hip surgery and 8 cm from each lengthening. The growth in his left leg could be slowed down up to 5 cm which would get us to our 29 cm difference. A difference this large is at the limit of what Dr Paley has done before, and as a result there is a real possibility of not achieving the full lenthening anyway.
The process is extremely difficult to endure and it is difficult to prevent infection at the pin sites and even the daily cleaning and bandage changes can be painful. Each time we would need to stay at least 4 months in Baltimore as the success of the lengthening is dependent on the rehabilitation process. Daniel would need to have two hours of rehab a day (which he would need pain medication to endure).
Also, the financial cost will be significant since we do not have health insurance in the USA and Dr Paley is the only specialist we feel has the experience to perform the lengthening. Each operation alone will cost a minimum of US$50,000 and this is without the cost of daily rehabilitation and follow up care and living in the US for at least 4 months at a time.
So while it is great news that Daniel's leg can be lengthened, it is a very difficult decision to make whether to put Daniel through this procedure. We are trying to speak to as many people as possible to help us make the most difficult decision of our lives. We hope that whatever decision we make, our family and friends understand why we made that decision but most of all we hope that Daniel understands.
Posted By Kristen (Daniel's Mum)
4 comments :
Wow... I'm glad you got lots of info about lengthening from Dr. Paley. It sounds like a lot for Daniel and you guys to go through. Have you heard about the other options as well and thought about those? Our doctor suggested either a Symes' amputation or the Van Nes rotationplasty since our son with PFFD doesn't have a hip to work with in his right leg. We are considering the Van Nes because it will give our son a "knee" to power the prosthesis with. It would only be one or two surgeries for him to go through. It is a hard decision and my husband and I wish you all the luck with yours.
My daughter was born in 1988 with PFFD, 2+" difference at birth. She has no fibula and her ankle was twisted 90 degrees out and 90 degrees upward. Faced with uncertainty from NY and Washington DC doctors we found Dr. Paley when she was 3 months old. Her hip was marginal but Dr. Paley said "it will be a long road but we can do it". He fixed her ankle perfect at 10 months old. What a feeling to see it straight when others said it couldn't be done. He's done 3 lenghtenings, also operated on her foot, knee and hip. Holly is a sophomore at Georgetown University now and we're looking at her final 1.5" next summer (would be 9" without surgery). No matter how bad you think that you have it you will see worse when you go to his facility. Minor complications along the way, but nothing that can't be dealt with. Kids deal with the pain easier than we do. Although he is known as the best he has trained numerous surgeons around the world. It's worth whatever it takes if he says it can be done. Any questions I'm at finch57@verizon.net. Thinking of you, Jeff.
One more comment, Dr. Paley studied with Dr. Ilizarov who pioneered the process in Russia. He basically is the one that brought the procedure to the west. He has the most experience and is considered to be the best. Don't go for any amputations until you see him. We were told to amputate by leading pediatric orthopedic specialists and they were wrong. He reconstructed Holly's hip to make it stable and performed a total miracle to her leg. We didn't go for slowing the growth in her good leg or we would have been done now. Don't regret that, opted to leave her good leg alone. Maybe it would be different if the difference was greater. Dr. Paley gave us the choice, just said it was a little more work for him. They developed a new procedure that was just out and she had it for here last lengthening. Just one internal rod that unscrews itself by twisting the leg back and forth. No pins and infection sites to deal with. The rod is still in her femur and it will be replaced with another one for the final lengthening, then removed for good. Hope this helps, Jeff.
Hi Kristen, Shane & Daniel,
I was just reading about your trip to NY and Dr Paley.
It really is a terribly hard decision that you are going to have to make on Daniel's behalf, truly the most difficult decision of your lives, because as i understand it as you have to decide before he's around 3 years old, you can't leave the decision to him in later years, as it would probably be too late.
I just watched the 1st vid clip of Rob Brooks, he must have about a 12 inch length discrepancy, same as Daniel's prediction, and he seems to have coped extremely well with just his type of leg prosthesis, which i'm sure has saved many many thousand's of $'s and painful surgeries & procedures.
Every path you could follow will have Pro's & Con's, but it's obvious you won't be making the ultimate decision without plenty of research, and i'm sure your family, friends & Daniel will understand the decision you make.
All the best with whatever you decide, and all have a lovely Christmas!
Dave :)
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