What is Moyamoya

I found out that I had Moyamoya the night before my surgery. I finally got this letter from Dr. Spaetzler and he said that and that he suggested a double bypass. The next morning, in the pre-op room, I told my neurosurgeon and he said, yes, he had the same diagnosis. I was only able to read a little bit about Moyamoya the night before; a godsend that I didn’t have time to obsess.

Moyamoya means “puff of smoke rising” in Japanese. It was first discovered less then 50 years ago, it seems to predominately happen to Japanese and it is inherited, but it is not a dominate gene disease. It occurs near the Internal Cartaroid Artery inside the brain, in the Circle of Willis. The blood vessel system is duplicated on both right and left side of brain, so you can see where it is regular and irregular when you compare both sides. On my left side, the blood starts to go up one vessel and there is this nest of tangled, thinly walled blood vessels, but they are nearly occluded. They say it looks like smoke rising. I think it looks like a rats nest. I have had this my whole life and yet didn’t really have any symptoms. The amazing thing about this is that my body built it’s own system around it; it re-routed blood vessels to get around this failing system. The human body is an amazing thing, it can overcome things without you even knowing it.

When they performed the surgery, they prepared me for a bypass; they would take a vein from my scalp and use it to route around the tangled nest, but they decided not to install it when they were inside my head. The figured that the work-around my body created was working well enough compared to the risk that they bypass had.

I will have an angiogram done in the next month to create a ground-zero image of my brain, to know when things are getting narrow or failing in the system and then I would have to undergo brain surgery again to do the bypass. Let’s hope that doesn’t happen anytime soon.