Arteriovenous Malformation (AVM) Survivors and side effects

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

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?

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.

Sorry for my delay in responding. The neurologist visit didn’t really give us much info other than they felt she may have had a tad bit of swelling but nothing to cause the episode of migraines she was having. They put her on about a weeks worth of steroids and this seemed to stop the cycle of the migraines every 24 hours. They didn’t rule out a break-through seizure. They switched up her meds but ended up putting her back on Keppra because the side effects of the new meds were too much for her. For now we are in a waiting period to see if the radiation treatment worked and keeping our fingers crossed she has no more side effects during this waiting period. It can take up to 2 years we are told and that they sometime see brain swelling issues around 6 months after treatment in which they can treat with steroids. October is her 6 month mark. Fingers crossed. 🤞🏻

Sorry for my delay in responding. The neurologist visit didn’t really give us much info other than they felt she may have had a tad bit of swelling but nothing to cause the episode of migraines she was having. They put her on about a weeks worth of steroids and this seemed to stop the cycle of the migraines every 24 hours. They didn’t rule out a break-through seizure. They switched up her meds but ended up putting her back on Keppra because the side effects of the new meds were too much for her. For now we are in a waiting period to see if the radiation treatment worked and keeping our fingers crossed she has no more side effects during this waiting period. It can take up to 2 years we are told and that they sometime see brain swelling issues around 6 months after treatment in which they can treat with steroids. October is her 6 month mark. Fingers crossed. 🤞🏻

@bobbiejo13, I wanted to check back in with you. How was the appointment with the neurologist and surgeon? What did you learn? What are the next steps for your daughter?