Anyone had neurosurgeon/rad onc recommend radiosurgery to fistula area of DAVF/AVM cerebellus/temporal lobe near petrous bone (near brainstem) to further reduce arteries feeding into veins – no nidus per se but an area that can be contoured and treated “safely” to kill off artery connections and reduce flow further – waiting on repeated MRI/MRA to ensure this area hasn’t changed in 4 months and to hear consensus from docs regarding treatment. Already had embolizations x2 with unfortunate complication of ophthalmic artery occlusion causing left eye blindness.
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@PositiveCathy Hello Cathy - I have a DAVF but mine is left side by my transverse sigmoid vein. so far treatment has been by embolism with glue and onyx.
Where are you being treated?
I go to Stanford and see Dr Michael Marks.
Angela
Hello Angela -
Thanks for your response. I am being treated at UCSD with Dr. Khalessi.
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@PositiveCathy if you are looking for a second opinion you can send your scans to Barrow Inst in Arizona.
Dr Michael Lawton now runs it and he used to be at UCSF.
I believe they will do this remotely for $150
He is considered the best.
Angela
Thanks, Angela. I looked that up and plan to send my images/reports to Dr. Lawton for 2nd opinion. Thanks for sharing.
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So glad @PositiveCathy I have seen his work and one of my doctors is good friends with him and would of had him as my doctor but had already had brain stuff at Stanford and lived closer to Stanford so that is why I choose to stay at Stanford. But I totally trust Dr Lawton even though I have never met the man. I am so glad you are following up with him. Please keep us updated on what is going on with your case.
Hugs
Angela