Jun 26, 2019 Latest post:
Jul 22, 2019
On March 10-12 2019 I was in the hospital with a stroke, In that time, I had an MRI, MRA and a cranial angiogram, along with tons of blood tests and other tests to rule out other things that are associated with this disease. Dr. Vikram Jadhav diagnosed me with Moyamoya Disease (mmd). Had no idea what this meant, and I am one to do my research, so began my search for information. A rare brain disease is all I heard.....something about surgery, which I immediately shook my head no to. I'm 45 on the 13th, I've never had surgery in my life and I really don't want to start now. Dr. Vik said good. We don't want Surgery. Umm yea, I don't want anyone messing with my brain! However, I had so much to learn.
Moyamoya is a rare progressive brain disease that there is no cure for, although in alot of people it is managed well with surgery. Google it. My neurologist wanted to "wait and see" what happens, to which I wasn't comfortable with with all the research I've done. So, my PCP referred me to a Dr. In the cities and after reviewing records He is ordering surgery. I don't know much more than that other than dealing with daily headaches/migraines and light headedness. I "forget" what I'm doing at times, I "forget" simple words or names. My vision is off along with my coordination and balance at times. I haven't driven my car nor can I work because of my symptoms.
I was just okd from my insurance for a cranial bypass in July! Yikes, this is so real. It's a 3 hour surgery and me and my family will be going to St Paul, MN. I'll be in the hospital for at least three days. I hope to have my husband and family by my side.