Moyamoya–What is that? A Drink?

March 15, 2016

by Anna May

My senior year of high school was filled with SATs, college tours, working at TJ Maxx, advanced placement classes–that was, until that last week in January 2014.

I was taking a test when out of nowhere my vision became blurred and then in all went black. My hand had been cramping a lot more than usual lately and there was that incident at the diner when my words would not come out of my mouth. I thought it was the stress of my senior year. My body was twitching wildly and I felt I had lost control. Something was terribly wrong.

After many tests, a parade of doctors and residents, MRI, CAT Scan and an angiogram I was diagnosed with a severe case of Moyamoya.

“What is that,” I thought, “a drink?”

No , you have an extremely rare disorder that 1 in 2 million people share. Your brain is a tangle of small, thin, weak and dying blood vessels that up to this point have found alternate routes to get the blood and oxygen where it needed to be. That alternative system is no longer working. You need two immediate brain surgeries to restore blood flow. That was only the beginning.

We left Yale medical in CT. Flew 3000 miles to Stanford, CA. To find our A-Team. That’s where Dr. Gary Steinberg saved my life.
My first brain surgery was on February 5, 2014. I did not request pain management after the 10 hour surgery. I was in the ICU in horrible shape. In pain, swollen and unable to stop vomiting. Which was a concern for the graft that was laid was supposed to restore blood flow and could have ruptured due to all the pressure.
I was in and out of Stanford Hospital for 10 days I lost almost 20lbs as I prepared myself for the second necessary STA-MCA revascularization surgery which took place on February 20, 2014. I ended up unable to speak or swallow after round two. This required me to stay in Stanford hospital another 2 weeks.
My mother was there with me and other family members came for short stays including my father and my two sisters. I was a terrible hostess. I was so unwell. We finally moved into Ronald McDonald House where we were welcomed with peace and quiet. No more monitors, nurses and doctors coming in every hour, day and night. We left California for Connecticut three months later. I began having seizures after a grand mal that lasted 30 min. My brain was revasularized but I was not well. The purpose of the surgeries were to provide immediate blood flow with a direct and indirect bypass and to reduce the risk of stroke. I was still having symptoms and now seizures too. I started taking lamictal and aggrenox for blood thinning and headaches.
I no longer drive and I differed to the University of New Hampshire for a year. I have TIAs occasionally. I must drink 8 oz of water every couple of hours and am more sensitive to drugs, alcohol, lack of sleep or just basic irresponsible behavior.
But, dreams really do come true, and time is a great healer. I am now studying at UNH to become a child life specialist. I am going to be twenty on World Rare Disease Day this year. I have volunteered my time at the Ronald McDonald House in New Haven and started an organization called ATeam. We make blankets for sick children. I have been given a gift and although Moyamoya will always be with me, I will go through life with my eyes wide open always looking forward and believeing that there is a greater plan for me.

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