Having explored all the available options I had decided on Proton Therapy for my course of treatment. My An doubled in size from 7mm to 14mm (from Jun 2011-Jul 2012) and the Dr who was monitoring me said it was time to take action. It was interesting to me that him being a surgeon, he was more than willing to discuss the radiation treatments over surgery. He had no experience with protons and his suggestion was Gamma Knife 1st even though he worked with a Cyber Knife doctor who trained at Stanford. I had done extensive research and was going to go with Cyber Knife, if and when I needed to seek treatment, but that all changed with the construction of the Hampton University Proton Center. My wife and I had a 3 hour consult with Dr Allen Thorton at HUPC. I was hesitant going to a newly opened center until I found that the team at Hampton originally was at the Harvard Proton Center and from there went to Indiana University Proton Center, formerly the Midwest Indiana Proton Center. Together his team of experts have treated hundreds of AN's. The draw back to Proton Therapy is the cost and the fact there is a total of 30 treatments. I am fortunate to live across the river from Hampton, about 30 mis each way.
Insurance turned us down twice for these treatments but at the level 3 appeal they overturned the denials and approved the proton treatments.
The 1st step was to have impressions of my teeth made as they construct an appliance that fits into your bite and your head rests against this via your upper teeth.
Step 2 was to have a surgeon implant 4 small, 4mm stainless steel screws at locations around your skull as reference points for the proton nozzle to align itself each time. This was outpatient and was more of an inconvenience as I was going on a motorcycle ride the next morning. The spots were tender but not overly painful. I did take some great pain meds that afternoon and night. The day after I was good to go as long as I did not cinch the helmet down tight.
Step 3 was today. I went to the proton center to be fitted with the bite appliance and had a mold made of my shoulders and head. The mold is a 2 part foam inside a plastic form. When they lay you into the exact place you will be it swells up and creates a mold you lie in each time the treatment is done. They also did a CT scan that tells the techs the thickness and the bone density that the beam passes through to reach the targeted tumor. They will spend the next 2 weeks writing the program that tells the proton machine exactly where the tumor is, its size, and depth.
The treatments are scheduled for Oct 8th. I will do regular updates and try not to bore you. I hope this information will help others in making an informed decision if this is the route they choose to go.
One final note. My wife and I did not take this decision lightly. We put everything in Gods hand for His guidance and direction. Doors that were closed to us opened up and we walked through. We thank God for His peace throughout this entire decision making process and guiding our steps along this path.
More to come.....