Hi,
I was diagnosed with primary moyamoya disease in 1998 at age 28, and was getting almost no blood to my brain at that time. I was blessed to find Dr. Michael Scott (who has sadly passed away now) at Children's Hospital in Boston, who used the innovative surgical technique he developed called Pial Synangiosis to improve my blood flow and save my life. It was a miracle, and I lived a symptom free life for many years. Unfortunately, I had an unexpected mild hemorrhagic stroke in 2017, probably due to increased emotional stress related to work. This resulted in disability for me, although I am still able to walk, swim, speak and work extremely part time.

I am writing for two reasons: First, I would love to share more of my story with anyone also struggling with Moyamoya disease to help in any way that I can. I would especially love to connect with anyone who also had Pial Synangiosis surgery for primary moyamoya disease. Second, I am interested to find out if any other moyamoya survivors have had narrowing of their blood vessels to their kidneys and how they found out that they had this narrowing. I am questioning whether this is a possibility for me, and what tests would help me to evaluate this potential risk.
Thank you to Mayo Clinic for this website and thank you for any responses to my email.
Best wishes,
Valerie.