Sounds like we have similar AVMs. Mine is roughly 4.5 cm x 4 cm in my left frontal lobe bordering on my motor cortex. It was discovered in 1982 when I was a teenager (I'm now 49) when I had a tonic-clonic seizure. Back then, the drs did not recommend any treatment except for waiting and watching since they were concerned that I would have severe right-sided deficits. Well, that probably wasn't the best approach after all! I had a small hemorrhage in September 2012 during a morning work-out swim. I had mild right-sided weakness in my arm and leg which resolved in about 4-6 weeks. I'm now back to my old self again.
I immediately started sending out packages (cover letter with brief AVM history, DVDs of my latest MRI, CT and angio) to the following top notch neurosurgeons:
Dr. Robert Spetzler, Barrow Neurological Institute (Phoenix, AZ)
Dr. Neil Martin at UCLA (Los Angeles, CA)
Dr. Michael Lawton, UCSF (San Francisco, CA)
Dr. Christopher Ogilvy, Massachusetts General Hospital (Boston, MA)
Dr. Duke Samson and Dr. Hunt Batjer at UT Southwestern (Dallas, TX)
All of the these doctors passed on surgery for my AVM (too big and complex), except for Drs. Samson and Batjer. The other doctors referred me on to other neurosurgeons specializing in some type of stereotactic radiosurgery:
Dr. Michael McDermott at UCSF, neurosurgeon specializing in gamma knife stereotactic radiosurgery (one of the best)
Dr. Nadar Pouratian at UCLA, neurosurgeon also specializing in sterotactic radiosurgery (CyberKnife)
I had telephone consults with most of the drs but went to see Dr. Michael McDermott at UCSF and Dr. Samson and Dr. Batjer in Dallas. If you can, I recommend going to see the doctor in person for their recommendation vs. a telephone consult. While a telephone consult provides you with good info, I think it's good for both the doctor and the patient to assess each other, face-to-face.
I now have to decide what to do as I have the following options:
1) No treatment
2) Stereotactic radiosurgery (gamma knife or hypo-fractionated radiotherapy using the CyberKnife)
3) Embolization and craniotomy
Essentially, those are all of the main ways to treat an AVM so I have to pick one(!)considering all the benefits and risks involved with each approach. I agree with dancermom's comment about the treatment choice depends partly on your personality and what you are willing to put up with.
It's sure isn't easy making the decision. Hope this info was of some help.