Any AvM survivors out there?

Question

An avm is an arterio-venous malformation that can be found anywhere in the body but most commonly in the brain or extremities. If left untreated they cause a ton of pain and disfigurement. I have found a couple Facebook pages dedicated to AvM's but don't care to get on Facebook very often anymore. Anyone have a group reccomendation within this or other apps? Does anyone else have an AvM(s)?

Answer

You should look up Dr. Wayne Yakes. I worked with him for years at Swedish Medical Center in Denver (Englewood more specifically) and he pioneered a treatment for AVM’s. I saw amazing transformations in the people he worked on. He’s world famous actually...
Good luck to you, but there is hope for treatment!

Answer

Hi Adrienne! 
So glad to hear you’re in the process for treatment for it. How did they find it? Were you symptomatic like headaches and vision changes or was it accidental. Yours is a pretty large one! I work as a Vascular Intervention Xray Technologist in neuro and the cardiac cath lab and we treat these a few times a year in the lab; one patient had to go to the OR and I got to watch the removal. 
Here’s a recent one I helped my neurosurgeon treat with Onyx (a permanent glue). I’m not involved in Gamma though.

This is the case I got to see in the OR. You can see the artery and the ‘nest’ of the AVM. 
Crazy! Anyway, you’re so young and glad they found it early and have started treatment. 
❤️ Forreste

Answer

@kim I do have symptoms from radiation. I have necrosis, memory loss, and for awhile my head throbbed so bad

Answer

I have a brain avm. I’ve had 4 sessions of gamma knife radiation to shrink the Avm. It is t he largest they’ve seen in West Va. I now live in Ga and I’m seeing a new neurosurgeon and waiting to see what their plans are and to see if it ya shrunk any. I was told I was born with my avm but didn’t find out about it until I was 26 years old.

Answer

I have an AVM in my left frontal lobe that was discovered after a car accident last year when I was 27. I underwent two rounds of gamma knife radiation yet it's still consider inoperable due to location. I am waiting for it to shrink away from my motor strip which they say can take years so I can have surgery.

Any AvM survivors out there?

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