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Arteriovenous Malformation (AVM) survival and side effects
I'm a survivor of an AVM in my right hemisphere. Since the surgery I am dealing wth migraines and wondered if anyone else has experienced this. If you have what have you tried to get back to normal living. I'm also interested in reading about studies and research on AVMs
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Hi, @auldcelt - wondering how you are doing lately?
Thank you for reaching out! Yes I have and appointment with a headache clinic hopefully the Dr can help . Dark house meditating helps but never goes away.
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1 ReactionWelcome to Mayo Clinic Connect, @avmbrainbarbara. Having to quit your job is a massive life change. I'm really sorry your doctors are making you feel unseen and not heard.
Wondering if you have consulted with a neurologist specializing in headaches? What do you do to feel better when you experience dizziness?
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
@mistyeve, have you had the embolization? How are you doing?
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.
3 years. Too large >5 cm, and areas too important to consider surgery. Treatment at Emory which was spectacular. Had consultations at Barrow, Stanford, and USC prior to deciding on Emory. 2 courses of radiation and now over 90% gone but just per MRI/MRA. Pending angio in a few months.
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1 ReactionThank you for your quick response. I will read these.
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1 ReactionHi @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?
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3 ReactionsI 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
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