Shalon's AVM Story

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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!
 
Explore my site!
  • Take a moment to check out the AVM Info page and familiarize yourself with the condition.
  • Check out my blog which I update regularly to tell you how I am feeling and dealing with all of this drama!
  • It's a long one, but My Story tells everything from finding out I had this until I decided to take action and try to defeat it.
  • See why I have chosen Dr. Yakes 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.
  • Take a look at the Pictures to see 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'm also adding pictures of other AVM patients to this page, so check back often for updates!
  • 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!  Feel free to contact me at ShalonAVM@gmail.com and don't forget to sign my guest book!
 
 
 
 


Updates!

  • Trip #16 is done!  Trip Summary is up as well.

  • Timeline pics have been updated through trip #16.

  • Meeting others pic page is also updated.

  • Trip #15- Trip report up and blog was also updated (although a very lazy update at that! )

  • We Walked for AVM and Aneurysm Awareness in San Francisco.   It was an awesome day!   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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Next Denver Trip #17, is schedule for July 8th-10th.  
 
We are going to squeeze in a mini vaca with this trip and visit my sister and fam in Washington State.  So I should have fun pics and a fun story to update next month!
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For anyone who has an AVM I sincerely encourage you to check out the AVM Survivors Network It 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.  Currently there are over 800 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!  We will all be eternally grateful to him for this.
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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.