I found this forum last summer when I was first diagnosed with MM. What an incredible resource. However, I was unable to really use it as life was already too much to handle by that time.

Here’s the story of my family’s recent series of horribly weird and unfortunate events, leading up to and including my MM.

I am a 54 year old woman living in Albany, NY, married to a wonderful man who happens to have CP, and have an incredible 26 year old son. I am a self-employed website developer.

My father was diagnosed with lymphoma in October, 2005, after having weird symptoms starting in the spring. He underwent chemotherapy and is now declared cancer-free. He’s doing remarkably well, especially considering item #3 below.

My 25 year old son experienced a ruptured aneurysm in his brain in early December, 2005, and spent two weeks in intensive care. He miraculously lived and suffered NO deficits although he is struggling with life at the moment.

On January 31, 2006, my mother suffered a sudden, unexpected, very massive stroke and died the next day. We are convinced she never knew what hit her.

I had surgery in early April, 2006, on both my feet to remove painful Morton’s neuromas that were making it very difficult to walk. I had suffered from these for several years. I am still struggling with them hoping that the coming 1 year mark will mark significant progress.

Due to my son’s aneurysm and my mother’s stroke my brother and I both got brain scans. My brother is fine.

I, on the other hand, after umpteen scans and an angiogram, was diagnosed with Moyamoya disease. Naturally. Of course. The subsequent blood flow MRI determined that my right carotid artery is completely occluded but the alternative blood flow I developed is so efficient that I only have slightly less blood flow in that hemisphere than in the left (my MM is unilateral). I don’t need surgery. I’ve had no strokes or TIAs. I have no symptoms. My neurosurgeon, Dr. Dileep Yavagal (who is my son’s neurosurgeon as well), at Albany Medical College, at first thought I would not need any monitoring since I am well past the age that most people are diagnosed and I was diagnosed incidentally. But, after consulting in New York City, he’s decided that I will repeat the blood flow MRI every 9 months. Apparently, the Japanese and Koreans now believe that even in people of my advanced age, MM can progress.

I am definitely NOT as dispassionate about all this as this "list" may sound. I am struggling to get some normality back in my life, very difficult since I have my own business. I have no energy resources left. As with the above list, I often find myself cutting to the basics.

I am seeing a very good therapist. I am doing OK, basically, especially since I don’t need surgery. I just couldn’t imagine how I would find the resources to heal properly from that. I’m healing much more slowly from the foot surgery than expected. I am convinced it’s due to the unimaginable stress my family’s been under in the last 15 months.

One of the things that freaks me out the most about my MM is that there has been a heavy focus on brains in my life. The MM just makes my family’s current weird and bizarre “series of unfortunate events” even weirder and more bizarre.

My younger sister was brain damaged (right frontal lobe) in a car accident at the age of 21 in 1978 and died 10 years later. At the time of her car accident, I had already worked in several psychiatric hospitals, work I pursued due to a long-term interest in brains even though I avoided psychology and biology in my first bout with college (another story). My first area of study had been English and drama, an area that gave me great communications skills but did not prepare me to understand the answers to the questions I asked the psychiatrists with whom I worked. I eventually went back to college for a second undergraduate program as a pre-med student and ended up in Albany, NY for a graduate program in neurobiology. I ended up getting my Masters in physical anthropology with an emphasis on human brain evolution.

Brains. Can’t live with them, can’t live without them. At least all that studying did prepare me to understand MM. To some degree. Sort of.

Family has become vitally important. We’ve developed a great support system and had a wonderful family reunion at our summer house in Maine last August. I miss my mother so much. We were very close. My father made the braided rug my mother had planned to make for their living room. He is such a model of perseverance. And my husband is a rock. I am a very lucky person.

Anne

Sent you a PM
mary Grace ,from Albany