By the way, what’s grade 5 mean? I’ve had 2 neurologist and neither of them said anything about a grade.
Hey Alison,
Here’s a link to a radiology site which explains the differing grades
Spetzler-Martin arteriovenous malformation grading system
Hope it helps
Merl from the Modsupport Team
2 Likes
I just wanted you all to know i no longer go to any neurosurgeon. I cut it all out starting this year. I got tired of all the physical pain, waiting, laying there on the operating table, talking with my doctor (which is not near me anymore), and still no big changes on my one side droop. It’s all in God’s hands now. Let’s see what happens 
1 Like
Hi Shawn, the re-bleed rate you mentioned needs to be seen in context, based on my own experiences and discussions with neurosurgeons this is my interpretation of what you’ve been told.
A 70% chance of a bleed is a ‘rule of thumb’ lifetime risk that some neuros use by subtracting your age from 120. I think this came from some study. Anyway my point is that it is a lifetime risk not an annual risk, and you may live to 99 and never bleed again! The 2% is the annual bleeding risk, this is cumulative (meaning that it’s a 10% risk over the next five years) but in any one year it’s just a 2% risk…ie…it is really quite low and not something to ruin your life worrying about. One of the first things my neuro said to me after my bleed was ‘you don’t need to think of this as a time bomb’. Try to look at this annual risk as 98% chance of nothing happening!
I’m really sorry that you are in pain. That is definitely worth being concerned about and seeking relief for, and I really hope you get help.
Stay well hydrated, and like another member said, focus on enjoying every day, don’t wish your life away and try to relax.
PS: I have a grade 4 AVM with one bleed. I spent 18 months terrified and then managed to change my mindset and largely forget about it. My headache symptoms (milder than yours) improved once I relaxed. Stress is all round bad for you especially with an AVM. Try to lead a low stress life as far as possible. I know that’s hard!
Best
Jonny
3 Likes
Hi Shawn, how are things for you now?
I hope you are doing ok.
Jonny
1 Like