I had confirmed diagnosis of right parietal lobe AVM sized 2.7x3.2cm when I was 14 years old (1984), after having headaches and a few major grand mall seizures in class and hurt myself very badly.
At that time doctors recommended surgery, but my parents were against it. I have been taking 200mg Tegretol twice daily since I was 14 until today and that was able to control the seizures. Control was good as I had only minor partial seizures 2-3 times a week, which later reduced significantly. With the medication, I slowly forgotten about my AVM and lived normally like other kids, went to college, and started a software career and later a profitable business.
For the past 3 years, the partial seizures seemed to disappear, replaced with a mere feeling of aura that disappears within minutes. Other symptoms like headaches have also disappeared for past 20 years. Generally, my symptoms have improved over the past 25 years.
Now I am 51 and still on same dosage of Tegretol. For past 5 years, I am doing periodic follow ups and MRIs with 2 different neurosurgeons. The MRIs and scans revealed no changes in the size of the AVM (2.7x3.2cm) and no visible leaks.
One neurosurgeon with a private hospital actively pushing for treatment like gamma knife. The other neurosurgeon with the government hospital recommended to just monitor, since he thought that the AVM is dormant for the past 35 years and doing something may aggravate the AVM.
I am aware of the possible catastrophic prognosis of my condition, and I just don’t know what to do. Maybe the doctors’ recommendations are also based on the costs (or profit) of the treatments, and I would like to decide based on the risk and benefits of either approaches.