Dear Dr.Bhatt... HELLO, thank you for writing me back, bless you for your kindness. And I am merely a patient on neuronetwork, so am not doctor of any kind.
I am in a white family of europeon lineage that is over run with the genetic form of CCM's, AVM's, epilepsy, etc. It runs to the females. Only one male, my uncle, but all my sisters, their daughters and my female cousins on my mother side are affected.
All of my malformations are in eloquent areas. Just last week, new MRI technology showed 3 new tumors (bringing my count to over 20 CCM's) but these three are in the pons, upper pons and superior cerebellum vermis. It is my understanding that this location of the brain stem is the highest piece of real estate in the brain. That even a 2mm insult could cause devastating neurological deficiets, or even death. My other large CCMs are in the Thalmic region, deep inner brain, and that their pathology is changing. I was just hoping you might have advice as to how i can fight this disease. There are just a small number of neuro surgeons that have expertise in this disease classification, and are trained to perform skull base surgery. The C spine is also very sick and their are lesions and cysts the soft tissue there as well. If it were you Dr Bhatt, how would you fight this disease. I am degrading so signifcantly.... memory loss, falling down alot, very hard to write anymore, sick, fatigued, hard to be in public places w/o becoming very ill. Then there is the issue of the WBM disease. I was told i would be lucky to survive 5 years. I dont know the origin of the WBMD, but am working toward the diagnosis as to what is causing this? Was just hoping you might have some good advice to offer me. I'm so tiredof being so ill, living in so much pain, i see my life quality dissolving... You are deeply appreciated. Kindly, Michelle Kennedy Pharo
Hello Dr. Bhatt... i just wanted to say hello, your studies are very impressive, maybe you shall be the one who brings forth great advancements in neuroscience. I am merely a patient with an incurable or inoperative neurovascular disease as well as white brain matter disease, but i welcome you and if you ever have any questions about my challenges, please feel free to ask. With kind regards, Michelle