So I made the trip back out to California. I had another angiogram (not as painful, but left me very bruised and sore for about 3 weeks). In between the many appointments and tests we were able to enjoy ourselves with my family. I was very sore and it was hard to walk at times, but I was a trooper. After the weekend we were able to meet with my surgeon and he had good news. The right side has great flow now (next to perfect), but there is a small part of my brain that is considered "dead". My aunt brought up a great question that I wish I asked... to see what part that brain controls. Left side is still slightly narrowed but not enough to surgically intervene...fingers crossed that doesn't change. We were supposed to leave that day, but due to the blizzard out east our trip had to be extended. It was nice, but Mark got a touch of food poisoning the night before our flight left and thankfully got it out of his system on our layover in Denver. After that he was fine.
It's hard to get people to understand moyamoya. The surgery doesn't cure me of the disease. It stops the progression. It helps a patient live. Without the surgery you could die of a stroke, hemmorage etc. Even though I have had surgery I am still going to get headaches, occasional numbness and be tired. However, with the right medical team now I know I will live a long and happy life.
It was actually nice to talk to the neuropsych doctor to put stuff in perspective. She said I am a woman in her young 30's dealing with way more than some people way older than me. I have a child with a disability who requires extra care and my own health. Not many 34 year olds have to deal with a disease that could kill them. They say you really can't judge someone until you walk a mile in thier shoes.
Well my goal for this year and many years ahead is no brain surgeries! The two I have had have wiped me out!!! Once my leg from the angio isn't so sore I'm going to start walking on my treadmill. I haven't been able to Excercise in 2 years!
So yearly imaging will happen out in Boston and then in 3 years I will go back out to California for a retake of all the tests. Thank you to everyone who has been by my side. Xo