My teenager daughter discovered small visual field defect thru regular eye checkup. Traced back hemorrhage in June 2011. Grade 1 avm, 15x4x3mm right temporal, 2-3cm from surface. No other symptom. Ucsf, ucla and barrows institute suggest surgery while Stanford and Johns Hopkins recommend cyberknife.
Painfully aware of the pros and cons of each. We don’t ‘mind’ as much the 2-3 years wait for radiosurgery but more concerned about the long term effects radiation can cause e.g tumor, and the lack of data there. Surgery is a lot more evasive with a significant recovery and possibly generates more defect. 3 against 2. Don’t believe getting more opinion is necessary. Just trying to digest all the information before making a decision. Any experience or advice much appreciated.
It seems like the Avm is quite small. My son had a craniotomy for the removal of his Avm, and afterwards he had a residual Avm 1-3mm in size, the standard for treatment was the gamma knife but we did not want radiation we saw Dr. Pierre Gobin- Columbia Presbyterian Weill Cornell in NYC, and he was able to obliterate with just glue, no radiation, every other opinion was to use radiation, or another brain surgery. The glue is Onyx it cuts off the blood supply and it is non toxic. We are so glad we sought other opinions, " the standard " by the Medical board is surgery, or radiation. Most Doc’s will not go against the " standard of care" . I am not sure if your daughters Avm is too big for just onyx, but do some research. Feel free to friend me and read my son’s story. Diane-Paul Faherty’s Mom.
My thoughts and prayers are with you.
Thank you Ron. I think that's probably what we have to do. We feel really good about the care we receive at UCSF, and we trust their opinion, but there's a small part in me saying they made it (craniotomy!!) sound too good to be true....
Thank you for your kind response! Unfortunately, her AVM is not a candidate for embolization due to a sharp curve leading to it. So glad your persistence saved your son from anothe surgery. I will friend you, love to see some details behind the surgery and the recovery.