1. < Stroke & Cerebrovascular Diseases

Arteriovenous Malformation (AVM) Survivors and side effects

Posted by auldcelt @auldcelt, Dec 16, 2016

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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echolsleslie | @echolsleslie | Oct 23, 2021
In reply to @avmcbellar "Hi @mockinbrd. I think it’s good to keep occupied with your daily routines. Do as much..." + (show)
@avmcbellar

Hi @mockinbrd. I think it’s good to keep occupied with your daily routines. Do as much as you can without the disruption. It will get your mind off any worries.
I also had the glue to fix the AVM. For the last 2 surgeries to repair my ruptured AVM, the medical team used my right femoral artery for access instead of removing my skull. I have a friend who also had an AVM without rupture. Her medical team also did an angiogram to repair her AVM but accessed it through her brachial artery instead. In the process, they discovered a brain tumor which they later removed through surgery via the skull. My friend is recovering very well and is currently doing outpatient therapy to improve balance issues.
Discuss your options for the surgery to decide what is the best avenue to take for you. My friend planned ahead and participated in outpatient therapy prior to the surgery which increased the strength. Comparing physical evaluations before and after the surgery helped tremendously with the treatments. Outpatient therapy knew exactly which deficits to target.

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I have a AVM it was classified as a Grade 1 small. I am going to have radiotherapy with gamma knife. I would much have it removed permanently through surgery but after they described brain surgery ? I just read that your friend had brachial artery removal and wonder why they didn’t give this to me as an option ?

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intrepiddoc | @intrepiddoc | Jul 21, 2022
In reply to @colleenyoung "Welcome to Connect, @auldcelt. I'm glad you started this discussion on AVM. Here are a couple..." + (show)
@colleenyoung

Welcome to Connect, @auldcelt.
I'm glad you started this discussion on AVM. Here are a couple of links to research being done:
- About Arteriovenous Malformation (AVM) | Aneurysm and AVM Foundation (TAAF) http://www.taafonline.org/am_about.html
- Arteriovenous Malformation Information Page | National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/avms/avms.htm

When did you have the surgery? How are you managing the migraines?

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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

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 21, 2022
In reply to @intrepiddoc "I am not sure about the function of this blog and if it is to help..." + (show)
@intrepiddoc

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

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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?

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2 replies
intrepiddoc | @intrepiddoc | Jul 21, 2022
In reply to @colleenyoung "Hi @intrepiddoc, welcome to Mayo Clinic Connect, an online community connecting patients, allowing people to share..." + (show)
@colleenyoung

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?

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Thank you for your quick response. I will read these.

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intrepiddoc | @intrepiddoc | Jul 21, 2022
In reply to @colleenyoung "Hi @intrepiddoc, welcome to Mayo Clinic Connect, an online community connecting patients, allowing people to share..." + (show)
@colleenyoung

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?

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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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mistyeve | @mistyeve | Oct 6, 2023

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.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 19, 2023
In reply to @mistyeve "Hello.... I scrolled through a few post to see if I could find any information on..." + (show)
@mistyeve

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.

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@mistyeve, have you had the embolization? How are you doing?

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