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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!
Any AvM survivors out there?
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)?
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Fo
The glue they use doesn’t actually kill the AVM, but the alcohol embolization technique Dr. Yakes uses does! Your vascular doctor will know who Yakes is! Ask him and please email or contact him. So worth it! Yakes pioneered the ethanol treatment and many doctors from the US and all over the world came to shadow him and learn the technique. It was quite fascinating meeting all these brilliant doctors. You would go through many treatments, depending on the size of your AMV but like I said I’ve seen some pretty amazing results. Please keep me updated!
Em
Thank you for this info! I have been seeing a vascular specialist in NYC at St. Luke's hospital. So far I have underwent 4 embolizations. I believe they used glue not ethanol. I'm intrigued by Dr. Yake's technique. I am now considering emailing my doctor to ask him if ethanol should be considered for my next surgery. Again, thank you so much for this info!
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
Ad
Well I’ve had headaches most of my life and they just were brushed under the rug with medication. Well I was working night shift (have been for a year) and I couldn’t stay awake, had a terrible migraine and my peripheral vision was gone. So I told the charge nurse (worked on a heart floor at a hospital) and she sent me to the ER. Once I got to the Er they decided to do an mri and cat scan and that’s how they found it: I was also having left sides weakness and my face was tingly . I’ve had 2 brain bleeds and one where I was lift flighted by helicopter to one of our sister hospitals that was 3 hours away and was taken care of from there . Luckily it stopped bleeding or they were going to put a catheter in my brain . Thanks for sharing those pictures. Looks very interesting. I’m currently seeing doctors in Florida at the Mayo Clinic and they’re going over my case to see what my next steps are.
@kim I do have symptoms from radiation. I have necrosis, memory loss, and for awhile my head throbbed so bad
Ad
Yes! It was terrible! I would have numbness in my left extremities . But I had that before radiation . People just understand the toll radiation takes on people
Ja
My oncologist was such an ass. He made it seem like getting radiation was no big deal and when I had all of these side effects afterwards he acted like I was making it up. The head throbbing was so bad. I felt like I was getting electric shocks.
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.
Ad
It does help temporarily. I was prescribed rizatripton 5mg and it helps but you have to take it right when you feel the headache .
Ki
Does Tylenol make your headaches go away? Mine sound very similar to yours. Mine are in one area and are pounding and can get sharp as well.
Ja
I sent you a message request! I live in Oregon. My radiation was 6 months apart. Did you have symptoms from the radiation?
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.
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