Shalon's AVM Story
"In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they are still beautiful."
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!
Trip #48- Dec 2018
Two years since my last visit. I'm one of the "lucky" people who randomly has wisdom teeth coming in at this age. I'm teething! Like a toddler! Before allowing my dentist to make any cuts, remove the wisdom teeth as well as 6 of the teeth pushed out of whack by the old bulk, we figured an assessment of the AVM was in order. MRI with a local ENT showed growth since the last images they had on file (admittedly old!) so back to Denver for an official check up. Woke up to the good news that everything looked good, no new AVM to treat, and I should proceed with teeth removal and reconstruction. I admit I was almost hoping he would advise against that local surgery. I'm not really thrilled at the thought of surgery with people less familiar with AVM's and who aren't very connected to Dr. Yakes. It makes me nervous and I have a difficult time putting trust into otherwise qualified and most likely great docs. They just aren't AVM experts and that is something I struggle being ok with.
Trip #47- Dec 2016
Surgery Time! Everything went well, the bulk on the inside of my mouth which was pushing my teeth and jaw out of alignment was removed! A short hospital stay and then a few days in town resting, removal of some stitches and an all clear, and time to head home. Josh was unable to stay in town all week so my sidekick Carrie made the trek to this winter wonderland so I could have a travel partner home. That's love for sure! Recovery seems to be going well although I can't open my mouth very far, and eating is tough. Looks like milkshakes is the diet plan for the next few weeks while I work on stretching out the muscles and let the swelling decrease.
Trip #46- Oct 2016
Halloween! Last quick trip before the next debulking surgery. Handed out candy and wore my googley eyed Halloween gown. No big wounds or issues to deal with. A bit tired and need to gain my energy as the next trip is coming up quickly!
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 know...it's hard to believe! I barely believe it myself. But I managed to get the report up for Trip #30!
- The trips between 20-29, and well the ones since 30...not so complete...or even started. But I do plan to get the "highlights" for these up soon. Maybe in a day or two...
- I've totally ditched this in case you hadn't been able to tell. The details simply got away from me. And it seems repetitive. Cliffs notes- MRI's, emob's swelling, getting better. Easy!
I'm a MOVIE STAR!
- Maybe a little bit of a stretch to say that. But I did add a new page and sidebar menu item for my "Movie Star!" Page. Check out all the fun :)
- I just began documenting this journey in May 2010 (ya, kinda late I know) and haven't done it as often as I would have liked. But still there are some movies to show how this all really works, what happens, and the results of the treatments.
- NEW!!! Supermodel Surgery! You have GOT to check this out. It has my fun cupcake party before the big day, a "tiny" bit of grody surgery stuff, and then the pay off is to see me all cute with my new face!
- New!!! Treatment #30 in my "Total Sweetheart" ensemble and directed by Carrie Kerns. It's the best movie to date :)
- Treatment #27- our first attempt...not too bad I must say!
- Feel Good Sockies! Quick clip from our photoshoot.
- AVM Walk 2010 in SF (with Ben from AVMSN!!!)
- AVM Walk 2009 in SF.
*****Picture Updates August 2016 *****
- Timeline Pics- All up to date through trip #44. With very few treatments in the last three years, the stability and lack of growth is really pretty extraordinary. I hope that the most recent pictures provide some comfort and optimism for anyone just starting their journey.
Feel Good Gowns
I started making gowns for myself because it made me feel cheerful with each trip to the hospital. And I noticed that it also made other people smile to see ME in them. I created some caps as gifts for random people who were also in for embos, made some for the friends who I have met along the way, showed appreciation to the nurses by giving them caps as well. And eventually this all morphed into a little side business called Feel Good Gowns. I loved doing this, but couldn't maintain the website and the cost of having this side project as a real business. So while the store front is gone, I am happy to still help out anyone who needs a gown to help brighten the day or a scary hospital stay. Just send me a note and I will be happy to work with you to make it happen!
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.
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. I joined the group in 2008 and watch it grow, celebrating 1000 members, then 5,000, 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!
Each year AVM Survivors Network has members who participate in the TAAF Awareness walk in San Francisco. If you would like to find out about the current walk, check out their site here- http://www.taafonline.org/
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!
A Few of the awesome fundraising products that have been created by members include- Brainbows, Butterfly charms, and Lion Snaps available for purchase.
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 infringement is intended.