Questions for Your Neurosurgeon (brain and spine avms)

Welcome & Help AVM 101
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Many thanks to member Larisa Diephuis who contributed to this thoughtful list of questions for your neurosurgeon. This is a work in progress -- feel free to add you own questions by commenting on this discussion.

What size is my AVM? How many cm?
Where in the brain is it located?
How many feeders does my avm have? Which arteries are feeding it?
What kinds of changes can you see in my avm from previous scans?
Is my avm considered “deep” or "accessible”?
Can you show me on the scans where it is located?
What “grade” is my AVM & what does that refer to?
What is my risk of rupture if I leave my avm untreated?
What are my risks if the avm is treated?
Am I a candidate for open surgery?
Am I a candidate for embolization?
Am I a candidate for radiosurgery?
What is my best treatment option and why? What is my second-best treatment option?
If you do not recommend treatment, why not?
Is it true that small AVMs are more likely to rupture?
What functions may be affected if my avm is treated?
What will my recovery be like? What lifestyle changes should I expect?

Could I have an AVM somewhere else, too?
Do I have any symptoms of HHT?

If surgery is an option, how many surgeries have you done on avms similar to mine?

If embolization is an option, which embolic agent will you be using and why? How long has this agent been in use, and how permanent are its effects?

If radiosurgery is an option, can you explain how it works?
How are the types of radiosurgery different?
Cyberknife
Gammaknife
Proton Beam
Which one do you use?
Who would perform this?
Where would it be done?
How long would it take?
Would I be awake? Any medication?
What is the recovery period?
What is evidence of success with this radiosurgery for avms like mine?
What are risks of radiosurgery? What side effects should I look out for?
What is the best way to contact you if I have a complication or side effect?
How long does radiosurgery take to work? Do you follow up with angiogram? How long after?

And, one of the most important questions,
Which treatment would you choose if the patient was your (mother, father, sister, brother, or spouse)?
If you were in my shoes who would you want treating you?

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This is a great list of questions. I am scheduled for my MRI since 30+ years ago. I see the endovascular neurosurgeon that a neurologist I work with recommended. I’m kind of nervous and don’t really know what things I should be asking, what things to expect. I’m sure technology has come a long way in 30 years. I’m just afraid that I will be told there is nothing they can do for me. So thanks for posting this. :blush:

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Thank you for this list. My almost 3 yr old son was diagnosed yesterday with AVM in the brain. The doctor asked if I had any questions when I was on the phone with her, but at that time,I couldn’t think of any. This is very helpful, thank you so much!!

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Thanks for this post since I will be trying to get treatment again after 23 years.

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Great list of questions. Just got diagnosed and the doctor didn’t give me much information. I didn’t know what to ask. So glad I joined this site.

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My AVF was 25 years ago. I think they have come a long way, so hopefully diagnosis and treatment shouldn’t be so invasive. God luck to you, seercat

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There are many more types of radiation than the three you have listed and each vary in their delivery, residual radiation, the chances of success and in the outcome for the patient. The determination of which system will be best will depend solely on the individual’s AVM but make sure you are talking to someone who REALLY knows what is available out there and who is willing to conference your case with other specialists.