My name is Mary Mayo. I'm a wife, mom, K-1 teacher, fangirl and I have Moyamoya. If you're reading this post you're either a friend or you're looking for more information about this rare disorder. I searched myself once I received the diagnosis. Thanks to the moyamoya.com website and the Stanford Moyamoya Center webpage, I was able to find answers to lots of questions. But, I didn't actually "know" anyone with real experience to help me know what to expect. So, since I'm full of nervous energy, I thought this would be good time to begin to document my surgery and recovery. I chose this background with the dandelion being blown because I've heard dandelions called "wishes." I have some wishes that doing this blog will bring me some peace as well as help someone else down the line. As for the name of the blog, my last name, Mayo is an anagram for Moya so I found it fitting.
I'll start with some background information. I had a stroke at the age of 33. Luckily I didn't have any residual problems but it was pretty scary to have a stroke at such an early age. After spending some time in the hospital and visiting various neurologists in the city, it still wasn't determined WHY I had one. My wonderful primary doctor, Dr. Thomas Batchelor, wouldn't give up. He sent me to a local neurosurgeon. The neurosurgeon did an MRI and an angiogram and determined that I had about 94% stenosis (blockage) on my left carotid. But, he also saw the collateral veins had taken over lots of the work and didn't think surgery was necessary at that time. My right carotid was looking pretty good so a regimen of plavix and aspirin was recommended. Looking back I wonder how common the bypass surgery was in the area. I do think he would have mentioned it if it was a possibility. He only mentioned stints and that they wouldn't really work.
Fast forward about 12 years. I start having really bad headaches accompanied by numbness in my hand and face. I'm having vision problems and hearing problems. It starts happening every few days but gets better after a few hours. I head in to the ER and essentially begin the same journey I took 12 years ago. This time, I have a new problem. My right carotid artery is narrowing and becoming blocked and the left looks to be almost completely blocked...all this happened WHILE I was on blood -thinners.
Dr. Batchelor sent me back to the neurosurgeon. Friends had mentioned stints for blockages so I hoped that would be the answer. I knew that was a serious surgery but not uncommon. The neurosurgeon explained to be that stints weren't an option for what I was experiencing. He suggested that he thought I had Moyamoya. He told me to do some research on it but explained the the carotid arteries were narrowing and small vessels were developing. Those small vessels aren't really strong vessels and their appearance on the angiogram give Moyamoya its name. Moyamoya means "puff of smoke" in Japanese and these vessels look like a puff of smoke. Then, he went on to explain that the medicine was a good short term solution. He told me I could continue on the medical treatment but that people who do that and don't do anything else "usually last until their 50s." Woah! I really like this doctor and I think he just wanted to make sure I understood the severity of the situation. He then explained the surgery and recommended that I have it. He didn't do the surgery but another doctor in the practice did. Next step was an angiogram and a SPECT CT.
Of course, nothing happened as quickly as I would have liked. Being a teacher I really hoped I would get the surgery and recovery over during the summer. Being a fangirl, I had really hoped it all wouldn't interfere with Comic Con plans. Well, we can't always get what we want. It feels like the planning and scheduling took forever. While I waited for appointments in Charlotte, I learned more about Stanford. I did more research online. I heard so many people praising Dr. Steinberg and the fact that he's performed this rare surgery over 1300 times! I knew I wanted him to do my surgery. I still visited with the local neurosurgeon but also sent my films in to Dr. Steinberg. I should also mention that my husband's family lives near Stanford. So, we would have a place to stay if things worked out. I heard back from Stanford and got everything scheduled. I'll be having surgery the last 2 weeks in July and return to NC the beginning of August. IF everything goes well, I'll still miss the first 4 weeks of school. (I love my job, my students, and my school so that's a big disappointment for me.) As for Comic Con, those tickets just sat unused. Buying two last-minute $1000 plane tickets and constant headaches made Comic Con a dream for another year. (Of course, this would be the year almost all of my favorite leading men were there....Hugh Jackman, Tom Hiddleston, Michael Fassbender, Nathan Fillion, Bruce Campbell, and Jamie Fraser himself-Sam Heughan.) Maybe next year.
