Hello everyone and thank you for the nice welcomes. To start off my real name is Mary and I just used the mane Bodie Boy because it's the name of my sweet yellow lab whom happen to lying beside me when I joined the group. I thought this was going to be used just for me. Anyway, I am gonna go with it. So here is my story.
I live in Southern California and was diagnosed in early Dec 2012 with a cavernous angioma in my left thalamus. I had my first bleed and had burning on the entire right side of my face and head, numbness in my right arm. I even had burning in my gums,sinuses, tongue and throat on the right side. About 2 weeks later I had another bleed causing my vision to go crazy. I had double vision. After consulting with the DR's in the hospital I was told that there was nothing they could do because of the location. I was sent home and told I would have to have annual MRI's., put on a anti seizure meds. My vision improved back to normal within about 10 days. I still have the burning in my face but it is substantially better then the onset.
This started the journey of seeking information about CM's. and Neurosurgeons. I visited two different DR's in the LA area. Dr. Alexander who works under Dr. Black at Cedar Sinai and Dr.Gionatta at USC. Both recommended no surgery because of the location. Wait until I have another bleed then they would consider surgery.
I then travelled to Arizona to see Dr.Spetzler at Barrows! Wow were we impressed with him and the facility. He felt very confident that he could remove the CM from my thalamus. We left feeling very overwhelmed as now surgery was really a option.
So here is my dilemma. I would like to get another opinion recommending surgery before moving in that direction. I want to be sure I am not being overly aggressive. I am feeling really pretty good at the moment.
Does anyone have any recommendations on Drs? I have learned that there is a big difference between Dr. in this very small community of neurosurgeons.
This website has been very helpful and I have read many of your stories. I appreciate you all sharing. I apologize for my many errors. I am not use to posting on blogs.
Thanks again,
Mary (AKA Bodie Boy)