Jacob’s Condition
Our medical establishment still has not wholeheartedly embraced the idea of limb lengthening because it is a lengthy, costly process that can lead to multiple complications. Therefore, we are often battling insurance companies, because they simply do not want to pay because this is often seen as an elective or “unnecessary” procedure. Try telling that to your son, whose left foot stops a good 7 inches from his right foot!
Lengthening is the only alternative other than amputation and wearing a prosthesis for life. Dr. Dror Paley is among a select handful of Orthopaedic Surgeons in the United States that even offer limb lengthenings. Dr. Dror Paley is the Director of the Rubin Institute for Advanced Orthopedics at the Sinai Hospital in Baltimore, Maryland. He is unquestioningly the a leader in his field.
When Jacob was a baby, we visited doctors in Australia and Los Angeles and quickly learned that there were no doctors either willing or qualified to carry out lengthenings, especially because of Jacob’s additional hip deformities. Amputation was the only option presented to us. We did not accept that. So, when our continued research led us to Dr. Paley. We quickly learned that Dr. Paley was the only specialist that offered us a good chance of lengthening Jacob’s leg successfully.
“While amputation is something that any orthopedic surgeon knows how to do, it is a bit of a cop-out procedure, because what it’s saying is, ‘I don’t offer reconstruction,’ ” said Paley, co-director of Sinai’s International Center for Limb Lengthening, which performed more than 500 lengthenings last year.
“I don’t think it’s fair that it’s the only option they’re getting,” he said, referring to amputation. “The problem right now is lack of training in these newer technologies, lack of availability [of surgeons], lack of knowledge about how good the results are.” This was taken from an excellent 2005 Baltimore Sun article that does a really good job of explaining the whole process. To read the whole article in its entirety click here.
So, the treatment we must seek is located in Baltimore, Maryland and requires extensive travel to and from, lodging, etc. Jacob has had three hip surgeries over the last 6 years. This summer is Jacob’s first lengthening and we hope to get 8cm or 3.1 inches. His entire adult leg length discrepancy is estimated at 30cm or 11.8 inches if nothing were to be done. We will need to spend 4 months in outpatient care while Jacob undergoes the physical therapy requires as his bone is lengthened. During this time Jacob must live in Baltimore and have biweekly checkups with Dr. Paley.
Jacob has Physical Therapy four hours a day, five times a week. The Physical Therapy is an integral part of the success of this procedure. Bone growth occurs daily at the rate of 1mm (about 1/25 of an inch) as we turn a screw implanted in Jacob’s bone. However, the muscles and tendons need to catch up to this new growth. Without the Physical Therapy, Jacob would not be able to bend his knee, let alone walk. The procedure and the PT that goes with it is so specialized that we have no choice but to remain in Baltimore for 4 or more months if we want the process to be successful.
Obviously being away from home for 4 or more months creates a financial hardship. If you would like to help, please click here. Insurance hopefully will pay for the majority of the procedure itself, but they are not willing to pay for the extended Physical Therapy beyond 20 visits. Insurance does not cover travel related expenses and lodging, etc. As you can imagine, it adds up fast. David has had to take off many weeks of work just to help with logistical support, physically lifting Jacob in and out. Rachel has been unable to work, as all of her time has been spent caring for Jacob.
Everybody in this family has been pitching in to help get us back home with 3 inches. Jessica is even holding the gauze for Rachel during the daily changes. Additionally, Jacob will miss a good portion of the first grade, so Rachel has been home schooling him as well. David will be going back to work Sept. 10th. Rachel, Jacob and Jessica will probably remain in Baltimore until the end of October, when we hope to achieve 3 inches. Initially, we had hoped to be all back in Colorado by September, but growing bone is no small task and we have had to slow down a bit to avoid complications.
