Living with an Arteriovenous Malformation is just part of my normal everyday. I've been aware of this my entire life and dealt with many different things along the way.
This site is my ongoing story of what it is like to have a facial AVM. I have often felt isolated by this condition and have spent many hours online searching for information that applied to me. The problem is that most searches provide results for brain AVM's which are more common than those in the head/neck and extremities. While this condition is related, it is not what my AVM is and didn't provide me with the information and the sense of belonging and understanding that I was looking for. I still felt that I had little that really pertained to me and "my" experience with this.
So this site is my story. I hope that others suffering with AVM's may find it helpful. It is mostly a site about personal experience, the treatments I am currently receiving, and the many wonderful people that I have met along the way. I will do my best to also provide accurate information about what an AVM is and the different treatment options that are out there.
I don't claim to be a scientist or doctor, but I have lived with this for over 30 years and hope that some of what I have learned along the way might be beneficial to someone just starting on this journey to recovery!
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Explore my site!
Navigation Links on the left appear on every page and will help by taking you to the various pages of my site with information about me and the condition in general. I add pictures and links often as I find more and more people to add to my AVM family!
A short description of some of the pages is below-
- AVM Info will familiarize you with the condition and how it impacts me!
- My blog is updated regularly with notes about how I am feeling and dealing with treatements. I also include AVM related news and some small updates on others undergoing treatment. Sometimes I also just update for fun!
- My Story goes from finding out I until I decided to take action.
- Dr. Yakes quick bio & links. See why I chose him to cure me of this crazy condition and what the Treatments actually are!
- Read about my Trips to Denver for Embolizations. I've included "My Summary" as well as the "Medical Mumbo Jumbo" for each trip.
- Pictures page has lots to see. Watch the increased growth of the AVM overtime, and imagine the psychological and social impacts that it has not only the individual affected by an AVM, but their families, friends, and communities.
- I couldn't leave out my "AVM Sisters" Stephanie & Andrea, who are both wonderful women that I have met recently also dealing with facial AVM's.
- This is a spot for them to talk about their experiences and how they are the same but still very different from mine.
So explore and enjoy! Thanks for stopping by and learning about Arteriovenous Malformations |
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Next Denver Trip #20, is schedule for Oct 7-10.
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Updates!
- Trip #19 Summary is up!
- Updated some pictures albums.
- Glamour Gown album is up to date and includes trip #19, Brooke in her pink cap, Camellia & Serene, as well as Arie and Lizzie modeling the gowns I made for them. Also, I've added pictures of my fashion competition Allison!
- Meeting other AVMer's has an update with my new friend Chris, as well as admissions lady Darlene.
- Timeline pics have been updated through trip #19.
- I have added a few new links to the "Cool AVM Links- including other AVMer's" page. So check out my newest little AVM girls, Gabi & Lainie!
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We Walked for AVM and Aneurysm Awareness in San Francisco.
More details and pictures can be found here!
Also, Scott made a video of the event with quick little interviews of many of our AVMers. You can check it out HERE.
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This is a support community for everyone affected by AVM's. While it is mostly "brainers" I am in awe of the kindness, support, encouragement, and general friendship offered by every member. We recently met a milestone when we reached over 1000 members from all over the world. And it is growing daily! The opportunities to educated yourself, to meet others who have gone through what you are facing, the ability to network and even meet others in person...it's just great!
Thanks to Ben Munoz for starting this wonderful website! _____________________________________________________________________________
Disclaimer: This site is not intended to provide diagnosis or medical info. I am not a doctor and don't ensure the accuracy of any information on this site. I have tried to provided original links for content that I have borrowed and quoted. No copyright infringment is intended. | 
