T.J.'s Diagnosis

On September 17, 2008 we took T.J. to see Dr. Gilbert due to severe headaches he had been suffering. At that time Dr. Gilbert believed that T.J. was suffering from migraines. Due to him awakening with headaches the doctor felt we should rule out anything else by having a CT scan. So, on Thursday, September 18, 2008, we went to St. Francis in Mooresville and had the scan done. The next evening I received a phone call from Dr. Gilbert that T.J. had what appeared to be a cyst or mass at the base of his brain stem. We needed to wait until Monday morning to hear from a neurologist what the next step should be. Talk about an incredibly long weekend! On Monday we were told that an MRI would be necessary to give more detail of the area. On Wednesday, September 24 we went to Riley Hospital for Children to have an MRI of the brain. This procedure lasted about 20 minutes. T.J. laid very still and did a great job during the MRI. I received a phone call the next day from Dr. Gilbert stating that T.J. had a Chiari Type I Malformation. He informed me that this was a congenital condition. I knew nothing about this, so I immediately went to the school nurse and we did some research together. What we found was somewhat reassuring, as was the phone call I received ten minutes later from Dr. Jodi Smith, a neurosurgeon at Riley Hospital. Dr. Smith explained that a Chiari Malformation is when the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. Our next step was to get an MRI of the spinal column and then to see Dr. Smith for a surgical consult. This took place on October 22. The MRI showed a restriction of the flow of cerebrospinal fluid and also the beginning of a syrinx. A syrinx is a fluid filled cyst encapsulated in the spinal column. After the MRI we went to see Dr. Smith. She is awesome! She examined T.J., talked with him, and explained what the procedure would entail. She was very detailed and told us everything to expect. We decided to go ahead with the surgery, which is called a Chiari decompression. Surgery is scheduled for November 17, 2008 at Riley Hospital for Children.