Embolization / surgery / radiation?

I had my follow up with the neurosurgeon finally. I’ve been bounced between OHSU and Kaiser so much and now I’m going back to OHSU because they want more tests. Grrr This neurosurgeon said that my AVM is the size of a small lemon and he thinks I should have embolization - this is the first time that has been brought up - and now he thinks I should have surgery and radiation! Wow! It just seems like I get only pieces of the puzzle each time I see a different dr…at first it was no surgery and only radiation, but now…
I feel like a pinball! I want off this ride :0( I want to do what’s right but I don’t even know what that is. I’m scared of making the wrong choice and ending up disabled or…
I have 2 children and a disabled mom to think about. I don’t want to wind up like my mom - she had an AVM that bled and had brain surgery 26+ years ago. She lost all her memory, was paralyzed - and still is partially, and her speech is slow, her mental ability isn’t where she should be :0( I don’t have anything positive to look forward to with this…I’m so angry to be in this situation as we were told there was NO WAY I could possibly have one of these when she first found hers,

Hi Maria,

The treatment plan sometimes has to unfold like you’re describing, as the doctor finds out more about your particular AVM. They’re all different and delicate, so there’s a lot of uncertainty. The main thing to find out is how much expertise your neurosurgeon has with AVMs and with each of the treatments that’s on the table. How many AVMs does he treat through each of these procedures per year, and how have the outcomes been? Remember that you have a right to look for a second opinion if you aren’t satisfied that he can treat you.

About your own outcome and things to look forward to… if your AVM hasn’t bled, I’m pretty sure your outlook is a lot better than if it had. When it bleeds, there’s the damage created by the bleed plus any effects of the surgery. That’s not to say that people who have had a bleed are doomed, but finding and treating your AVM before a bleed means you’re juggling fewer risk factors.

And there ARE things to look forward to! Active (untreated) AVMs take more than their fair share of blood, which can leave other parts of your brain a little “thirsty.” Closing or removing the AVM lets more blood flow to the rest of your brain. If there’s swelling or crowding around the site of the AVM, treatment will also reduce that pressure on the surrounding areas. So along with treating the symptoms, treatment can actually improve functions in all areas of your brain. My husband developed a new sense of humor after his embolization–suddenly, he started making puns. It wasn’t something we had thought about as “missing” beforehand, but it was a fun little bonus to all the expected benefits of treatment (symptom improvement, less fatigue, fewer headaches, faster thinking, etc.)

I hope you find some clarity; it’s hard when you feel like the choice is in your hands, but you don’t have all the info you would want. Making sure your neurosurgeon has a track record of treating AVMs should help you make the decision, and as difficult as that might be, it’s easier than putting yourself through med school to get all the facts you’d need to decide for yourself!


Hi, not certain if you read my story about my AVM. My AVM was discovered in April/March 2007(I was 57 years old). Treating doctor told me that more than likely, I was born with it. Not certain if it is hereditary. I am the only sibling out of four who has it. My parents were basically healthy. My symptoms started with a “bruit” in my left ear (humming). My equilibrium was 5% off and I had numbness on the left side of my face. No headaches or anything else. A few weeks following my urgent run to Urgent Care, I had a stroke (there were other medical circumstances that occurred that called for an MRI (I was in the hospital). At that time, the AVM was found. Six months later, the embolization took place because I was told I could have an aneurysm if I did not have it taken care of. On 2/14/08, the embolization procedure was done; my brain bled. The emboliation was performed by a neuro-radio surgeon. As the result of the brain bleed, my left side was affected, to wit: my left arm, leg and foot. Six months later, the top neuro (UCSD Hospital, Dr. U) performed the craniotomy to complete the AVM procedure. There were no other effects from this surgery. I went thru therapy, and today, I go to the gym. I walk with the aide of a cane, brace (outside of the house and at work), my left arm is 5% mobile. My speech was not affected. I think clearly 99% of the time (smile) - I am alive! Since the drs prior to the initial procedure expressed the urgency of addressing the AVM, I did not have time to meet with addt’l mds because I did NOT have private insurance. The only insurance I had was medi-cal (State medical program). My private insurance was terminated after I lost my job (before the embolization procedure). If your surgery is not pressing, please check into your options. From my reading the success stories of AVM survivors, I pray the best for you! I am free of the AVM, I have ret’d to work part-time and I am living life! Bless you and I hope to hear about your success story!