2 AVM on brain and going for HHT and more scans


One AVM on cerebellum, memory center and one AVM deeper on balance center.
Being checked for HHT and more AVM’S on the 28th at Cleveland Clinic. They are checking & marking the exact spots to be treated by Gamma Knife Proton Therapy.



Welcome to our community! How are you feeling about having an AVM? Often, it’s very scary but I would encourage you that discovering this sort of thing is scary but (usually) it all calms down and getting used to the idea is a good thing.

Since you are being tested for HHT, do you have some family history of AVMs or other AVM-related symptoms? Or is your doctor checking because of having found multiple AVMs?

We do seem to have quite a number of HHT members, so you will not be alone if it does come back positive.

Anyway, it’s good to have you join us. I hope we can support you.

Very best wishes



Hi there, I too have been for HHT assessments and have recently been diagnosed with HHT. I hope all goes well with your tests and procedures to resolve the AVMs. My known brain AVM took 6 years to obliterate , the medics are currently working out a plan of action to review whether I have any further AVMs. Keep me posted how you get on?


If you get a diagnosis of HHT, do join the Pulmonary/Heart/HHT group. You’ll find it under the three-stripes menu, top-right. Group members of the non-brain groups get alerts when other group members start a conversation. I hope it helps the rarer among us support each other.