I have written about my husband’s 2012 AVM bleed in the past that was/is located near the right foot part of the motor strip. He had stereotactic radiation in 2013 and 2016. The good news was he had no language deficits and his right side returned except for his drop foot. He is a concert pianist and has played in the US and internationally since then. He is also a music historian and written many articles and books.
The bad news is that he had an ischemic stroke in April 2025 that was FAR more devastating than the bleed. Because there is a tiny bit of the AVM remaining (capillaries) they could not give him clot blasting medications. No idea what caused the blood clot. This stroke has caused aphasia, severe reading impairments, notable memory issues though improving, top right quadrant blindness, thalamic neurological pain on his entire right side, and enough damage to his right arm/hand to make playing concerts in the future unlikely. His higher cognitive abilities are intact.
His neurosurgeon is recommending brain surgery to remove the AVM as damage from another round of radiation is unpredictable and will add to the necrosis already there. The AVM is close to the outside of the brain which is good but we are VERY concerned about recovery from another assault on his brain. He has to take blood thinners though due to the risk of clotting which will cause any AVM bleed to be much worse. His risk of a stroke from the AVM is 3% according to his very good neurologist.
Can anyone advise us about the best places to have brain surgery for AVMs in the US? Where should we go to get a second opinion? I read somewhere that Stanford and other medical centers will give a second opinion for minimal cost? Has anyone had this mixture of ischemic and hemorrhagic strokes?
I am continued to be amazed at everyone’s resilience and bravery as I read the stories and my heart goes out to caretakers and loved ones too.