10/20/13 - Elliot's Next Steps
Dear All – Thanks for your patience. Here is all we have learned and our next steps for Elliot.
Elliot's Road To-Date
We traveled to Columbia, MO at the end of September to see Dr. Dan; to Akron, OH in early October to see Dr. Weiner; and finally to Wilmington, DE this past week to see Dr. Mackenzie. These three names were given to us by our Geneticist, Dr Richard Pauli. All three are Orthopedists. Dr. Dan is younger and moving towards a dedication to LPA (little people of America) and bone dysplasia. Dr. Weiner is older and no longer actively performing surgeries. He has years of experience and dedication to LPA and bone dysplasia with expertise in Diastrophic Dysplasia. Dr. Mackenzie is the undisputed best bone dysplasia expert and surgeon in the US today, with a lifelong dedication to LPA. I would estimate Dr. Mackenzie in his late 50's early 60's.
After seeing Dr. Dan in MO, we were drawn to him immediately as the specialist for Elliot's long-term care, and immediately following our visit, we felt strongly about Dr. Dan as the potential surgeon. The care we received by Dr. Dan and all the wonderful folks in MO really drew us to the group. We traveled to Dr. Weiner knowing he was semi-retired, but trust Dr. Pauli's expertise and wanted another opinion on the knee surgery and anything else for Elliot. We were met by Dr. Weiner's assistant, Annie, an LP with Achondroplasia, shorter than Elliot, actuallyJ She was sweet, understanding, and accommodating. Although their office experienced a water main break, causing them to cancel all appointments for the day, Annie insisted Elliot had to be seen to Dr. Weiner as she knew of our background and length of travel to see him. We met Dr. Weiner and Annie in a conference room and they did their best to perform an exam using chairs as the exam table. Dr. Weiner even drew us a picture of Elliot's knee and the procedures he would recommend. He provided us with literature about Diastrophic dysplasia, as he indicated that Elliot had certain characteristics of this type. I was skeptical, as Dr. Weiner's expertise is Diastrophic, but those thoughts have been since confirmed by our recent visit to Dr. Mackenzie.
We met Dr. Mackenzie this past Thursday. He was wonderful, thorough, thoughtful, and had a way of explaining things that not only made sense to us, but also made sense to Elliot. In the past few months, I was struck by how aware Elliot is of all of this. We, as his parents will make the decisions, but events since this summer in particular have made me realize how important it is for Elliot to have a say in all that happens. Following our appointment with Dr. Mackenzie, we headed for lunch at a nearby Applebee's. I asked Elliot what he thought and who he would like to have perform surgery. Elliot ranked his meetings by saying he wants to have Dr. Mackenzie do the surgery even though he really like Dr Dan. Dr. Mackenzie, without knowledge of Dr. Weiner's opinion, indicated that while he did not dispute Dr Pauli's diagnosis of rMED, he also saw strong characteristics of diastrophic dysplasia. He even proceeded to examine me for signs, but none found, which seemed to intrigue Dr. Mackenzie and his intern physician and also another physician from Taiwan who was working with Dr. Mackenzie. Yes, we had 3 orthopedic surgeons in the room, examining and discussing Elliot.
Dr. Mackenzie is the best with the most experience in all things LPA and bone dysplasia. Given the opportunity, which we have been blessed to receive, why wouldn't we go to the best for Elliot? Honestly, it was a pretty confident decision Jeff and I made with Elliot's endorsement. We want Dr. Mackenzie to perform the surgery. Dr. Mackenzie will continue to practice for a limited number of years, but he has the most experience in the US with bone dysplasia. Even Dr. Mackenzie said that he has never seen a case quite like Elliot. Most notably, Elliot has a double patella which is completely dislocated on the left. Double patella is common in LPA, but what's never been seen is a dislocation where the top piece of the patella has slipped to dislocation and actually sits next to the bottom piece across the joint. In addition, Dr. Mackenzie felt strongly that an osteotomy (a triangle cut in the femur) would not provide positive benefit at this point. This is contrary to what Dr Halanski, orthopedist in Madison, Dr. Dan, and Dr. Weiner were recommending. Dr. Mackenzie reinforced a holistic approach to ambulation. You must consider the hips and knees as one – you cannot simply fix the knee without considering the impact of the problems that still exist in the hips. He is recommending knee surgery on the left knee only- consistent with our other experts; move the patella back into place with aggressive soft tissue release on the outer leg attached to the patella; reattaching the ligaments to proper place just below the knee. THEN, after this particular surgery, we see what we have and make decisions from there. The goal is to do what we can surgically to give Elliot the best opportunity to walk while he is still growing. What we do now sets Elliot up for what he will and will not be able to do in the future. As Dr. Weiner indicated, we have 6-7 years to aggressively intervene surgically before Elliot stops growing.