Luke scheduled for surgery at Hershey Medical on July 16

Parents shruggle with decision who should operate

For three weeks we had researched plenty of websites, talked to many people, had professional opinions...you'd think we would know what to do. However, we now had TMI...too much information. There were minor contradictions in opinions with what seemed like great consequences. We had changed our minds 3 times...chiari institute, Hershey Medical, Johns Hopkins...then back to Hershey.

The Chiari Institute (TCI) surgeons were kind enough to e-mail me the past few days on the differences between surgical procedures (hopkins vs hershey). Hopkins received high recomendations previously from one of the TCI surgeons; yet, another CI surgeon explained his preferences of a dura patch from Luke's own body over the other alternatives of a pig cadeaver and a snythetic material, which are more prone to leaking. We totally trusted TCI's opinions and they were critical in our decision making. Additionally, a pass by Johns Hopkins Hospital in Baltimore quickly discouraged our comfort-level to live there for a few days. This wasn't critical but we did weigh the environment: the seemingly unsafe section of Baltimore vs beautiful central PA. Some also suggested for Luke's recovery period might be an issue in that Hopkins and other inner city hospitals are usually understaffed, even though their surgeon staff may be top-notch.

Ultimately, after 2 agonizing days while camping at Raystown PA, we felt most comfortable with Hershey Medical and Dr. Iantosca. We hope we made the right choice.

Second Opinion from Johns Hopkins Neurosurgeon, Dr. Weingart, confirms treatment options

Dr. Weingart was recommended to us by the Chiari Institute. He was very friendly and answered our questions, but what we hoped would be a confirmation of our first opinion left us confused and torn. There were two components of the surgery that differed between the surgeons. The first was the type of material that would be used to patch the lining of the brain. A synthetic patch was used by Dr. Weingart, whereas a peice of Lukes own tissue would be used by Dr. Iantosca.
Also, Dr. Wiengart explained the use of titanium bracket to replace the removed section of skull and create more space for the cerebellum. Dr. Iantosca did not replace the skull that would need to be removed to operate.

Luke has appointment with neurosurgeon, Dr. Iantosca, from Hershey Medical Center

It seemed forever before we had our first appointment with a neurosurgeon. We had researched Chiari and Syringomelia endlessly on the Internet but our visit with Dr. Iantosca proved to answer all of our questions. He spent 1 1/2 to 2 hours with us, explaining everything that would be done now and that would possibly need to be done in the future.

Luke gets an MRI of his Brain

This MRI was a bit quicker since all it was imaging was Luke's brain. Again, he was brave when they stuck him with needles to give the IV for anesthesia. He cried for a minute but shrugged it off as the nurses and I distracted him with funnier things.

It was another baseball day, and he would not let another one of these "MRI"s interfere with him playing. Against the advice of the doctors and anesthesiologists, he played baseball. No reaction occurred since he was pretreated for the dye allergy.

Shriners calls with bad news: Luke has Syringomelia and Chiari Brain Malformation

The MRI was to be a precautionary test to rule out any rare causes of Scoliosis. Far from it, it "ruled in" two more serious disorders. We were told that Luke had a syrinx in his spinal chord and that we needed to see a pediatric neurosurgeon. He also had a significant Chiari Malformation. Janet Cerrone, Physician Asst from Shriner's, phoned in an order for an MRI of the brain and explained to us what it was that we were dealing with.

Within 2 hours I knew I wanted to visit the Chiari Institute in NY. This was a world class facility for treating Chiari malformations, Syringomelia, and other brain disorders. Unfortunately, the insurance coverage for the institute was considered "out-of-network" meaning a special condition in the Blue Cross (Federal) insurance agreement. It just so happened 5 months ago, I switched my coverage for handling out-of-network expenses (75% coverage) to coverage of 0% for slightly cheaper insurance. Who would've thought?! I can switch back to that plan however I would have to wait 5 months until November to do it...and that was not an option for Luke. Things have suddenly become urgent.

Luke gets an MRI of his spine

Luke was a real trooper when he went in for his first MRI. Later that evening was a little league peewee baseball game; this would've been his first game all season and he was so excited to play he wore his baseball uniform to the hospital. He had been too shy to play in the regular baseball season, but this day he did not want to be denied his opportunity to play.

He cried some when they gave him an IV for his anesthesia. The MRI went well, however, on the way to the ball game afterwards, he had a strange reaction where his face got very blotchy with white and red color. He looked slightly puffy as well. Rhonda called the hospital but when they asked her what anesthesia he had, she had no answer. Always write down what drugs they give him so you have that information in case of a reaction. Within 2 hours he was fine and he played a fabulous first baseball game of his life with 2/2 great hits and even an in-the-park "home-run" (thanks to the 50 million errors).