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).

Third opinion received from Shriners Hospital

Local friends and professional told us that Shriner's Hospitals for Children are experts in scoliosis treatment. Although we were satisfied with are second opinion, we went to Shriner's just to "check it out."
Dr. Asgar, the orothedic surgeon there spent over an hour with us followed by Janet Cerrone, PA. Dr. Ashgar throughly explained scoliosis and the evolution of the surgeries for the disease. He showed us x-rays of other children that had the disease and before and after surgery films to compare. We learned that they are researching a different surical technigue using staples in the vertebrae to control the curve. He explained that the research is relatively new but that the staple technige and avoid some of the complications that the grwoing rods create-such as a stiffening of the spine and rod breakage.
Janet Cerrone spent another hour with us discussing bracing and thoroughly examed Luke. She noticed what we had seen at our previous two appointments. Luke had a non-reactive abdomneal reflex on one side.
Luke had the bending x-rays that day at Shriner's. He was measured for a brace and was given the choice of color or pattern for the brace. The choices were numerous ranging from teddy bears and firetrucks to outerspace scenes. Luke picked a pattern called "solar." We also left that day with a prescrption for an MRi of the spine, to rule out any anomalies such as those mentioned by our second opinion, the cyst, the tethered cord, etc.
We were to return in 3-4 weeks, when the brace would be in and given to Luke.

Second opinion confirms treatment options

Our second appointment we scheduled with Geisinger Hospital orthopedic surgeon, Dr. Hess. He throughly examined Luke, was very friendly and patient and answered all of questions. His recommendation was to see Luke in one month, have "bending x-rays" taken and then order a brace. He mentioned that depending on the x-rays he may order an MRI of the spine. He told us that in rare instances there can be something causing the scoliosis. Examples he gave were a cyst, a tethered cord. He said that although rare, they could be easily fixed and then scoliosis would not be an issue. This to me sounded like something we should then hope for perhaps???
We planned to continue treatment with Dr. Hess and schedule a return appointment for June 6th.

First opinion at Pittsburgh Children's Hospital confirms Scoliosis

Following the X-Ray confirmation, we were referred to an orthopedic surgeon at Pittsburgh Children's Hospital, Dr. Timothy Ward. We learned more about the surgery that would be performed on a juvenille with continued growth. A spinal fusion could not be performed until growth is complete. "Growth rods" would be inserted and would require repeated surgery every 6 months to adjust the length of the rods until growth was complete. Dr. Ward explained that the surgery is difficult to recover from and that the rods can break in a young active child. He told us that avoiding or prolonging the need for surgery is the goal. He also told us that the braces are terrible and that keeping a 5 year old in a brace for 23 hours a day would be immpossible. He said that there is little literature to prove that bracing is effective anyway. Dr. Ward advised us to return with Luke in 6 months for additional x-rays to determine if his curve was progressing. The office visit lasted 10-15 minutes, during which most of our questions were answered with Dr. Wards hand on the door knob ready to move on to the next child.
On the drive home, we agreed that the "wait and see" approach did not sound good to us. We felt helpless, the goal is to prolong the need for surgery, although we were not doing anything to prolong it at this point--at least not for six months.