Is it normal to still suffer from headaches even years after your AVM was removed? I was told that the neurologists had seen an abnormal vein just hanging out in my brain but don't see any blood flow so I should be fine and will have another angio to check up on it in 5 years.In all honesty, It concerns me and 5 years is a while from now. What should I do?

That’s one neurologist’s opinion, getting another wouldn’t hurt. In your situation, I would have one angio every year to be safe. Alot can happen within a year. The continuous headaches concerns me a bit. “Abnormal vein” should have been a glowing red flag.
Best wishes to you.

Hey Monica, I would certainly get a second opinion about this mysterious vein. However. If it does check out ok, the headaches could be caused by your initial rupture. That’s what my pain neurologists and headache specialists are telling me now 10 months after my bleed. My scans are fine but we have had serious trauma to our brains and with that can come headaches and migraines that may last a long time. I’ve been all over this this site and there are definitely other survivors who have experienced this for long periods of time as well after their rupture. You should seek out a headache specialist if you already haven’t and see what they can do for you in terms of preventives. I also just got Botox a few weeks ago, and I must say after trying every opiate and narcotic without any help, the Botox has offered the most relief so far. I’m hoping it will continue to improve after my second treatment mid sept, and it’s starting to get covered by most insurances… I’m also trying acupuncture next next week too. Gotta start getting creative! Hang in there and keep us posted!


Hi Richard,

Thank you for replying. I agree with you. I will be requesting another angio. It's better to be safe than sorry, right?

Hi Jeanne,

Thank you for replying. Im glad botox seems to be helping you manage your pain. Im looking into getting a second opinion if my neurosurgeon refuses to give me another angio. I also think my headaches could be from acupuncture. The acupuncturist did say I would be experiencing fatigue, soreness, and headaches during the treatment process so who knows. Good luck with acupuncture and keep us posted! It's been helping me with my numbness and weakness.


Oh wow! Who would of thought that would be a side effect… Isn’t it awful that not only do we have to deal with the symptoms from the AVM and rupture. But then we have the side effects from the treatment? We all really are soldiers!!

I agree! I've noticed alternative treatments involve some sort of release so I'd like to think of it as being a good thing :) We really are! Gotta stay strong, always!

I can say after 5yrs from surgery I still get headaches quite often and I’ve just learned how to live with them I guess…past scans have come back clear and due for another MRI this week to follow up with my neuro in the next couple of weeks… I’ve been told that if normal paracetamol works then there’s nothing to worry about… God bless!

Yes, I find it a bit odd your neuro doctor isn’t concerned. The doctor I’m seeing request one every year until everything looks clear and that I feel free from headaches and pain. Make sure your doctor express his/her concern to your insurance so your angio is covered, you shouldn’t be footing the bill.
Good luck!!!

Hi Richard,

I find it odd too. I've been making calls and emails to the nurse practitioner and I get no response. Its very disappointing and I feel that I should just look for answers elsewhere.

Hi Adrian,

Im glad you are able to clear that up for me. Thanks! Whats paracetamol?

Take care and god bless always!