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2 AVM on brain and going for HHT and more scans


#1

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.


#2

Hey,

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

Richard


#3

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?
SmilerDi😃


#4

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.