"In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they are still beautiful."
Perfection is all relative. But look how cute I am now after all of my trips to Denver! Such great docs to fix me up!
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 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 that 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 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!
Next 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 I got a tentative "DONE!"
Ya, that's right!!! My November trip started with about 15 dozen homemade cookies to share with the staff. And apparently cookies are good luck because after everyone enjoyed them, after my embo, and in recovery...PA Mandy looked at my chart and said "You're DONE! Don't come back 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 3/18/2012 *****
Feel Good Gowns
We did a photo shoot in San Fran on 7/24 and have a preview at our Feel Good Blog!
Go look at us pretending to be Super Models :)
And, I had no idea she was doing it, but fellow AVMer Louisa totally gave me a huge gift with this awesome news article about FEEL GOOD GOWNS! You can read it here! Thanks little lady- you are the best!
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.
AVM Survivors Network
For anyone with an AVM I sincerely encourage you to check out the AVM Survivors Network.
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 w
orld. 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 and the team at Ben' Friends for starting this wonderful website!
We participated in the 6th Annual AVM Walk in SF! And I totally walked the 5K route! It's almost like I'm athletic :)
Take a look at our fundraising site and my newest movie! http://www.indiegogo.com/AVMSurvivors
We raised just under $5,000 this year! So cool.
This 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!
I LOVE to hear from people. Did you sign the guestbook?
If not, please take a moment and let me know you stopped by!
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.