Nilsa Reyna's Moyamoya Story

Finding the Right Diagnosis:

In 2012, I had a left side stroke resulting in right arm numbness and weakness due to occlusion of my left internal carotid artery. I was living in Chicago at the time, and was tested and scanned for any possible disease or condition that could cause a stroke at a young age. Nothing was found and the plan of care was a “wait and see" approach by staying as healthy as possible, and getting yearly MRIs/MRAs to monitor the narrowed artery. 

When I moved to New York nine months later to more aggressively pursue an acting career, I was also excited at the opportunity to get other opinions, and possibly a diagnosis. I sought the best care I could get and eventually decided that I needed to have a full time job with benefits so I could afford excellent medical insurance. During this time, I was also feeling burned out, and still dealing with deficits from my stroke. 

I eventually found a care team I trusted, but no one knew what caused my stroke. I also made the difficult decision to not have children because it was too risky. In the summer of 2018 when my neurologist retired, I was forced to find a new neurologist and she knew immediately that it was probably moyamoya. She had referred several patients with a similar story to Dr. Gary K. Steinberg, and they had been successfully treated at Stanford. 

She ordered more scans and things were still stable, but I decided to seek Dr. Steinberg's opinion. Scans were sent and within two weeks, Dr. Steinberg reviewed my case. His office asked if I could get to Stanford for more imaging and a consultation. Right after Thanksgiving I was able to go see him and this finally led to a formal moyamoya diagnosis. 

Brain Surgery at Stanford:

My prognosis for having a successful surgery was excellent and I agreed to have surgery at the consultation because I knew I was likely to have another stroke in my lifetime. I also learned that my history of migraines with aura dating back to kindergarten, my sometimes hard to stabilize blood pressure, and my unknown history of many smaller strokes that also showed up in my imaging, actually made me a classic case for moyamoya. Other doctors missed it because they were either looking for it to be bi-lateral or they had never heard of the disease.

On December 12, 2018, I had left side STA-MCA bypass surgery to improve cerebral blood flow and help prevent future stroke. 

Surgery went so well that I was released within two days. I was fully alert and verbal and everyone talked about how amazingly well I was doing. Recovery was fairly easy but within two weeks after surgery, I started experiencing glitches on my right side as my body adjusted to more blood flow. It was all normal and expected, but I did experience intermittent facial droop, slurred speech, difficulty reading, problems with numbers and acronyms, and fatigue when speaking longer than fifteen minutes. Symptoms would happen for a few minutes at a time and I later learned that I was experiencing TIAs as my body was rewiring. 

Since surgery I've regained more sensation in my right hand, so I went back to occupational therapy to continue working on dexterity and strength, and have greatly improved. In addition, I have more energy, my vocabulary has expanded, and I'm able to memorize lines quicker, which helps me tremendously in my creative life. Weeks after surgery I realized how big of a deficit I was experiencing living life without adequate blood flow to my brain. I always felt a step or two behind everyone and it would take me just a little longer to process things. I often felt I had to conserve energy to keep up with people and certain activities, but never knew why. I was even fired from acting and hand modeling jobs.

I highly recommend Dr. Steinberg and Stanford to other patients because they have a clinic devoted to researching and treating moyamoya. The fact that they see several moyamoya patients a week, many from all over the world, is impressive. I also received the best care I have ever received from Stanford, and everyone I encountered at the hospital knew about moyamoya. I really felt cared for while I was there. So far, only my left side is occluded and if I should need right side brain surgery in the future, I will fly out to Stanford immediately.

Written by: Nilsa Reyna