Onyx embolization of avm

Has anyone undergone this or know of anyone who has?

Have found some peer-reviews on this while avoiding university work.

I really am in a interesting position with my AVM and this treatment sounds promising.

Katie, I think you may get mixed reviews with this discussion, but I can share my firsthand experience after 4 embolizations of my rather large avm. I think most importantly is your surgeons comfortability and experience with Onyx. Onyx is a very powerful, but dangerous tool if used inappropriately. Make sure your interventional team has tons of experience with Onyx embolizations. Also, it is widely debated whether embolization alone can cure or obliterate an avm. I am of the belief that embolizations are primarily used in conjunction with another form of therapy, either radiation or craniotomy. The manufacture of Onyx only has FDA approval to market it as an adjunct to the above mentioned procedures to potentially shrink an avm, and decrease the amount of blood loss during craniotomy. Also, I believe it is induced for aneurysm repair. (Understand though, that Doctors can use any device how they see fit, regardless of FDA indication) My point being, Onyx has never been approved as a long term implant. I stopped my treatment after 4 embolizations because the radiation was too dangerous, and the craniotomy was no longer an option without extreme deficits. I am very comfortable with my decision, and have been doing great since my procedures in '09-'10. Please check out my blog and page, and if you have questions feel free to reach out. Finally, welcome to the site. you will hear lots of stories and information, some good, some not so good. Just remember, we are not doctors, only survivors. GK

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Thanks for the reply.

No I have not been offered this as a treatment I stumbled across articles while delaying an assignment.

My avm was 5cm big and after two rounds of radio-surgery it is now only 1cm-5mm big. I do not wish to have anymore radiation and have always been told my avm was in operable. I have made the choice to just live my life with it as I have still not had a rupture and am now 26 years old.

I do not believe I am invincible but I just think I need to limit the amount of radiation I give my body. My doctors have recommended another round of radiation but cannot give me risks as I will be the first person in my state to have a third round of radiation.-This scares me.

I have also just read another article about mRNA and using this to also help treat avm's. I am honestly waiting for something new to come out and help!


I had a 3.5cm right temporal brain AVM with aneurysms. I did NOT have a rupture/bleed. Thus far, I have had two embolizations and one coiling of a large aneurysm. The embolizations have removed 70% of the AVM, according to my neurosurgeon. I no longer have focal seizures, but continue to have headaches and pounding in my right ear (pulsatile tinnitus). I did have complications following surgery; loss of left side vision in both eyes(within 24 hrs post-op had a blood clot to the brain). I also had multiple pulmonary embolisms(blood clots to the lungs). I don't tell you this to scare you; this is NOT the norm. I had no problems after the first embolization. My doctor and I agree that doing another embolization would be pushing my luck, as I know I have been truly lucky. My hematologist feels that with the brain procedures, in particular, my body thought it was under attack and started throwing clots in overdrive!! Again, this is NOT the norm; it's a possible risk of the procedure, not probable.In making your decision you need to discuss the risk versus benefits with your doctor and your family. Best wishes to you.

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Katie- I’m debating the same thing. Most of the research I’ve read is pretty positive. It’s just so hard to know how safe it is going to be for individual cases. I will agree that experienced doctors is key from what I have read… And now I’m insure if my doc is experienced enough to do the procedure. Good luck deciding and keep us posted.

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