A Tough Few Days   Leave a comment

By Monday, we had sent three messages to our neurologist asking for direction. He responded early Monday morning and asked us to go the ER in Fontana. We spent 5 or 6 hours there, with the ER doctor, our neurologist, and three pediatricians. They admitted him late that afternoon. The morning Trileptal was wearing off, the Ativan had been out of his system for 10 hours, and the pain rises were coming less frequently. His medication was switched to Tegretol, the traditional medicine given to patients with TN. He was also started on Indocin.

Tuesday had a great 5 minute beginning before the pain hit. He woke up, turned around and gave me a huge smile and said “Good morning Mom!”. Love those moments! The pain continued to be constant at a 7/10 with short rises to a 10/10, but occurring only every 20-30 minutes. At 10:30, he was put on an I.V. to prepare for the MRI and MRA tests. These took place at 11:30 and lasted an hour or so. They gave GP a general anesthetic because it is impossible to anticipate the pain attacks. If you move during these tests, then the images are not clear. He came through the anesthesia and the tests very well, with a good recovery too!

The MRI (magnetic resonance imaging) and the MRA (magnetic resonance angiogram) will allow the doctors to see more clearly where the pain might be originating in his head. “The MRA uses the same machine as an MRI, but a special computer software allows it to only extract generated-by-blood images, as it flows through the arteries.” (about.com) Trigeminal Neuralgia is often the result of a blood vessel that is pressing on the trigeminal nerve, wearing away the protective myelin sheath around the nerve. Whenever the blood pulses, the nerve is touched, causing incredible pain.

The initial view of the scans did not show this result, and we were discharged. We will visit the neurologist again in two weeks for a follow up. Currently, GP is taking the Tegretol at 100mg/3xday and Indocin at 25mg/3xday.

The great news is that GeorgePaul was pain free from 5pm on Tuesday to 5pm on Wednesday! He slept for 12 1/2 hours on Tuesday night, in his own bed, so happy to be home! Wednesday brought a visit to his Aunt and cousins, a joyful reunion with his older sister, whom he adores and a visit to his grandparents. He rode his bike to Burger King with Papa, and then down another block and back. This was a great accomplishment, having never ridden on public streets before. (We live on a dirt road in a non-bike friendly area.) Just as we sat down to dinner (cooked by his sister!), the pain hit again.

He has experienced a constant pain between 1 and 6 with rises to 10 since then. We are all thankful that the HUGE episodes have not returned as of this point, but will continue to seek relief for him.

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Posted April 21, 2011 by broshaker in The Story Overview

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