Allow me to back up for a moment. Arteriovenous malformations can occur pretty much anywhere on the body - hands, face, lungs, uterus, etc. - but of all the locations, brain AVMs seem to be the most rare. A special scale exists to grade AVMs of the brain called the Spetzler-Martin Scale which runs from grade one (the smallest and least invasive of eloquent brain) to grade five (large, deeply located and/or within eloquent brain).
During my research, I kept running across the name of Dr. Richard Spetzler, one of the namesakes of the scale and a figurehead in the field of brain AVMs. Once I realized he was still alive and practicing I knew I had to get him to look over my information and hear his opinion on my own case.
I was pretty much prepared to pester him to death in order to speak with him, but it turns out he was relatively easy to track down. In fact, on Sunday (3/2/14) I submitted all the reports and images I had thus far and by Tuesday, March 4, he had responded to me!
My first MRI report listed my AVM as being 5x5x6 centimeters which is quite large and invasive. However, my neuroradiologist told me it was actually much smaller and measured closer to 3x2.5x1.5 centimeters and a Grade II. I was still operating on that assumption when I got Spetzler's response.
Dr. Spetzler sized my AVM as being 5cm again and graded it a four out of five as it is large, involves eloquent brain, and has deep drainage into my straight sinus.
I can't lie, that knocked the wind out of me. Most surgeons won't operate on anything more than a grade II or possibly a grade III. I had allowed myself to believe mine was much smaller based on my visit to the radiologist and therefore had allowed myself to hope that given the small size, my side effects after a surgery might be minimal.
The report continued on to say that given my young age, I had a high risk of rupture in my lifetime (around 80%) and a rupture would result in vision loss as well as weakness and numbness on the left side of my body.The good news in all of this was that Dr. Spetzler felt embolization followed by a craniotomy was still an option for a cure and he offered to operate on me personally at his facility in Arizona.
I am still a little confused as to why the neuroradiologist told me it was so much smaller because in this game, every centimeter matters. I do not doubt his competency, but I do hope to have that clarified at some point by someone.
The next step is tomorrow (3/7/14), I have two separate appointments at Johns Hopkins in Baltimore. They are regarded as having the top neuro program in the country and employ some of the highest ranked neurosurgeons in the United States. I am hopeful to leave with an even clearer picture of what I am facing and to make a final decision on whether or not to operate or pursue other treatment options.
