Perfection is relative. After over 50 hospital stays I feel like my version of perfection is being healthy, happy, and thriving despite what society would lable imperfect. I've had such great docs to help me. I'm grateful.
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 challenges along the way. I've always had success despite a few set backs and a long journey to be "well."
This site is my ongoing story of what it is like to have a facial AVM. I had often felt isolated by this condition and spent many hours online searching for information that applied to me. The problem was 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 didn't provide me with the information 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 others suffering with AVM's may find it helpful. It is mostly 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 know there has been a lack of updates to the site in the last couple of years. The good news is that I have just been living my life, doing the daily normal stuff, and have spent less time consumed with this AVM. It's all good stuff!
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!
Most Recent Trip #45- June 2016
It was very strange to head back after a two year break. I have to admit my anxiety was high and it "felt" like this was all a new process. My "expert patient" status was apparently revoked with the long time delay and I was back to being nervous, unsure, and so out of routine. I started with new office staff, all new PA's, and even a new waiting room. The most important person of course, Dr Yake's, was still there, still wonderful, and still a life saver. Literally. I did see some familiar faces that helped ease my anxiety and bring back my confidence. An easy touch up of three cc's in my lip, and I'm headed back in October or November for another check up. Even with the small treatment, the overall status is still great. No additional change in my cheek, and not much to be concerned with. Another trip done!
Trip #44- April 2014
Celebrated my official one year check up. A year passes quicker than we ever realize. Went in for the MRI, was put under for the angio and possible embo, but woke up to the news that Dr. Yakes didn't use any alcohol, that the AVM showed no signs of growth since my last trip, and that I was not to come back for another year! The stability of the AVM is thrilling and I couldn't be happier. I should go in for more debunking but honestly it's just not a huge priority. I feel like I'll eventually get to it as the bulk really is causing some issues with my jaw and teeth alignment. But for now, I'm enjoying just not dealing with health issues and taking "normal" for granted. It's been so worth it.
Trip #43- March 2013
Super easy trip! 3 cc's and don't come back for a YEAR! That's right. This is a milestone. An entire year not to bother with anything AVM related. How awesome is that? I don't know what I will do with myself with all of this time. Might need to find a hobby ;)
Trip #42- 9/13/2012
Heading to Denver for my real six month break! I will have an MRI, an angio, and if needed another treatment. I'm under the impression that there has been a bit of growth in my chin. I've been feeling those odd tickles that suggest something is happening. And I've noticed a slight increase in the size. But I'm just going to wait to see what Dr. Yakes has to say and not freak out in the least until then! I'm still feeling great, no bleeds, no pain...no reason at all to complain!
Magazine article July 2012
I recently had the privilege of of sharing my story with a magazine in the UK. The opportunity to spread awareness is something that I always take seriously. Making sure it is the right avenue, a good message, and a positive voice is a hard balancing act given our society's love of "stories" and drama! I know that the team at Real People Magazine listened to my concerns and desire to provide a story that would help educate people about AVM's and to do so with the best of intentions. I worked closely with them to provide details about my experience and approve the eventual article. While there may be little parts that aren't exactly accurate, or where some creative writing was used in order to make it hit home with their audience, the overall story is mine. With any luck it will be read by someone who has felt alone or challenged by a facial AVM. And if that happens, then I will be thrilled and consider this a succesful endeavor.
Trip #41- 3/13/2012 (yes the day before my birthday!)
This actually ended up being only 4 months of my anticipated 6 month break as I just couldn't stay away and missed everyone too much :) Well to be completely honest, a tiny amount of regrowth was popping up and I knew I wanted to take care of it early. So I fit myself into their schedule in March, a quick MRI looked great, small embo of 5 cc's done, and another "See ya in 6 months!" This little girl has NO complaints!
Trip #40- And I'm tenatively "Done!"
Yep, that's right! My November trip started with about 15 dozen homemade cookies to share with the staff. Apparently cookies are good luck because after everyone enjoyed them, after my embo, and in recovery...PA Mandy looked at my chart and said with an enthusiastic smile, "You're DONE! Don't come back to see us for 6 months."
So after 4 years of monthly embolizations I am well on my way to being a "normal" person who just lives her life and enjoys each day without the worry of bleeding, pain, and disfigurement. I get a 6 month break from treatment and will follow up with Dr. Yakes in April or May for a checkup, MRI, and a decision about whether I am really done or need just a few more. Either way, I'm thrilled. I feel great, I look wonderful, I am strong and in control of this beast, and I have a bright future filled with anything I can dream of. I no longer have to live in response to this AVM. It is a small part of me, of my journey in life, but it no longer holds center stage. I am so thankful for the experiences I have had, the people who I've met, the wonderful transformation I've been through. While none of this has been "fun" or easy, I have made the best of it and I've come out victorious. I have realized that I am stronger than I would have given myself credit for, and that I have the support of such loving and wonderful people to make sure I am successful in any challenge I take on. I'm pretty freaking fantastic to be honest!!! :)
Trip Reports UPDATED for #30!
I'm a MOVIE STAR!
*****Picture Updates August 2016 *****
If you or a loved one is facing a trip to the hospital please consider some of our Feel Good Gown products. Not only does it help brighten the day for you but for others in the hospital. It was an unexpected side effect but one that has brought me so much pleasure! Seeing me in my bright and happy gowns has put a smile on the faces of so many other patients.
Each walk participant is encourage to do fundraising for the walk. And AVM Survivors are always up for that challenge. The money will be used to support TAAF's ongoing mission to better the lives, support networks, and medical care of those affected by aneurysm and other types of vascular malformation of the brain as well as to support Ben's Friends with specific funding for AVMSurvivors.org which provides free support to all of it's members!
You can find me on facebook through the group
"Shalon's AVM Story" which was set up by my friend Margaret. (Thanks lady!)
Also don't forget to check out my blog- "Alcohol...it's the new glue!"
The link is on the left side of each page of this website through the navigation bar. But you can also just click here!