Arteriovenous Malformation (AVM) survival and side effects

Hello, does anyone else have a dura brain fistula? I was diagnosed with 2 of them and haven’t heard of anybody else having brain fistulas. I’ve read a lot online about them, but would like to talk to someone who has one.

AVM surgery 2021 Right side In the last 3 yrs I have had extreme painful migraine /headaches . I have had to quit my job and not sure what to do about them . Feel dizzy and my head still hurts where the opening of the surgery. Is Right eye Drs are making me feel unseen and not heard

Hello.... I scrolled through a few post to see if I could find any information on a PAVM (pulmonary).... I have one that was found by chance on my left lung. Embolization is the recommendation but I would like to know what others have experienced.

Hi @intrepiddoc, welcome to Mayo Clinic Connect, an online community connecting patients, allowing people to share the knowledge and expertise of experience living with a condition, and to give and get support.

Through a Google search, I found this recently published research by my Mayo Clinic:
- Evaluation of the Safety of Calcitonin Gene-Related Peptide Antagonists for Migraine Treatment Among Adults With Raynaud Phenomenon https://pubmed.ncbi.nlm.nih.gov/33871613/ (April 2021)

Here is information about AVM care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/arteriovenous-malformation/care-at-mayo-clinic/mac-20350547

Fellow member @msb18 discussed use of CGRP antagonists in this related discussion:
- Migraine - Aimovig and Cardiology or Pulmonology https://connect.mayoclinic.org/discussion/migraine-aimovig-and-cardiology-or-pulmonology/

I hope this helps get you started as you search for treatment options. How long have you been living with AVM?

Hi @intrepiddoc, welcome to Mayo Clinic Connect, an online community connecting patients, allowing people to share the knowledge and expertise of experience living with a condition, and to give and get support.

Through a Google search, I found this recently published research by my Mayo Clinic:
- Evaluation of the Safety of Calcitonin Gene-Related Peptide Antagonists for Migraine Treatment Among Adults With Raynaud Phenomenon https://pubmed.ncbi.nlm.nih.gov/33871613/ (April 2021)

Here is information about AVM care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/arteriovenous-malformation/care-at-mayo-clinic/mac-20350547

Fellow member @msb18 discussed use of CGRP antagonists in this related discussion:
- Migraine - Aimovig and Cardiology or Pulmonology https://connect.mayoclinic.org/discussion/migraine-aimovig-and-cardiology-or-pulmonology/

I hope this helps get you started as you search for treatment options. How long have you been living with AVM?

I am not sure about the function of this blog and if it is to help with information or simply create a group of like diseased patients and family for support. I would like some information however about the use of calcitonin gene related protein antagonist in these migraine like events that occur and have been described after radiation therapy for AVM. the treatments thus far , personally, have been unsatisfying and there is fear in using traditional migraine agents because they can cause constriction of vessels and theoretically, at least , cause problems. I am not even sure if you continue to moderate this board as your last post was 5 years ago. If you do still participate, do you have any sources at Mayo that could help answer this question about the use of CGRP antagonists? thanks