Help us to raise awareness for Arteriovenous Malformation (AVM)
This non-profit organization is in loving memory of Paige Elizabeth Keely
- 5/24/2011 - 1/08/2018
This non-profit organization is in loving memory of Paige Elizabeth Keely
The cause of Arteriovenous Malformation (AVM) is not known.
AVMs are thought to be congenital (present at birth), and researchers believe that they may arise from developmental derangements at the embryonic stage of vessel formation (at the fetal stage). However, this theory has never been clearly established, and some researchers believe that AVMs may arise after birth.
Unlike the association of head trauma, or other injuries with the development of dural arteriovenous fistulae (DAVF), there are no known environmental risk factors for AVMs.
Most AVMs are termed "sporadic," which implies that they arise spontaneously without a specific gene mutation being passed on from parent to child. There is no clear familial inheritance, except in families with Heriditary Hemorrhagic Telangiectasia (HHT). HHT patients are at some 10,000 fold higher risk of developing a brain AVM than the non-HHT population.
A brain arteriovenous malformation (AVM) is a tangle of abnormal blood vessels connecting arteries and veins in the brain. The arteries are responsible for taking oxygen-rich blood from the heart to the
brain. Brain AVM's are very rare and affect less than 1% of the population.
Once diagnosed, a brain AVM can usually be treated successfully to prevent complications, like a stroke or permanent brain damage.
Hereditary Hemorrhagic Telangiectasia (HHT) HHT is a disorder in which some blood vessels do not develop properly. A person with HHT may form blood vessels without the capillaries (tiny blood vessels that pass blood from arteries to veins) that are usually present between arteries and veins.
By Sharing your story you’ll help survivors realize that they aren't alone. Talking about what you’ve experienced gives hope to others fighting to survive their AVM ruptures.
You made it out alive!
We can't go back and change what happened, but you can start here and together we can make changes and fight BRAIN AVM’S together!
I am a cranial AVM survivor. I would like to share my story with you all. First, why do I know about Gina’s tragedy and Paige’s website? I went to high school with Gina. We didn’t hang out in school and only because of Facebook and mutual friends did I hear about what happened to Paige and touched base with Gina. I am very thankful that our paths have crossed again.
My AVM was discovered when I was 40 yrs old after multiple, severe (I mean debilitating) headaches over 3 months. I blamed the first one on allergies (even though I didn’t have any that I knew of; Houston, TX is known for very bad winter/spring allergies). The second one started to really freak me out. I had to lock myself in my closet so that there was no sound or light and no one could touch me. All of those things made it worse and made me want to puke. I was super lethargic and kind of pale, and a dull headache stuck around for about a week. My husband is the one that convinced me to go to the doctor. An important side note is that my mother had brain cancer at my age and I was scared that I was actually dying of brain cancer. Because of my husband’s persuasion, I went to my GP and she thought that my headache symptoms were ‘weird’. She said that 40 yr old women don’t randomly get debilitation headaches/migraines that wake them up in the morning… She sent me for an MRI (with a prescription, at my convenience) and I went 2 days later, when I had an ‘easy’ day at the office. I went back to work after the test (it was on a Thursday morning) and headed to the airport to go to Montana on Friday afternoon to spend a week out in the wilderness (no cellphone access or medical facilities). While in line to board the plane, my doctor called with the results and told me that my brain was bleeding (specifically she said, which I will never forget “you are hemorrhaging in your cerebellum”). I was in shock, but moved out of line and jumped in an Uber to the hospital she told me to go to where a neurologist was waiting for me. I spent 2 days in Neuro-ICU while the doctors ran tests with no answer to why there was blood in my brain. They did conclude that whatever was bleeding had temporarily stopped (the blood that they saw was dry and not ‘moving/growing’). We (my husband was with me the entire time) went home under the requirement that I lay down and not get my heart rate up until I go back to the neurologist and get a cranial angiogram. The doctors thought I either had an AVM (I had NEVER heard of this acronym before this date) or some sort of tumor that was masked by the blood and not visible in the MRI/CatScan. After the cranial angiogram, the doctor saw the AVM in the back of my brain, close to the surface. He told me about 3 different ways to mitigate the AVM, but really pushed the brain surgery because of it’s location (in a secondary part of my brain and close to the surface). My doctor had done about 700 of these surgery, so I felt comfortable with his and his team’s recommendation (we were in Houston at Methodist hospital which is listed in US News and World Reports top 20 hospitals for neurosurgery). My doctor gave me all of the AVM details and statistics and I did some research myself…I was VERY lucky! I was 40 years old, had a stroke and was getting ready for a 7-hr brain surgery… not the most ‘up-beat’ time of my life. I had to go to a lawyer and fill out my living will as I didn’t want my husband making that decision for me. BUT, I had the ability to actually do these things. The portion of my brain that had the AVM was a secondary section of the brain; it did not control speech, vision or any other primary skills. I didn’t have any personal history of abnormal bleeding (via nose or skin bruising), and I played enough sports as a small kid through college to give myself the opportunity to notice something like that. Also, my AVM rupture was a small leak that was capable of clotting itself. Before this set of events, I would have considered by self a very healthy individual (eating and exercise) – I think this was one of the reasons why my situation worked out the way it did. Surgery day was extremely hard for my family (with the help of anesthesia, it happened instantaneously for me. The doctors mapped out my brain and where the AVM was, then (literally) screwed my head into at a large brace that was fitted with a microscope and tweezers. The tweezers were used to cauterize the arteries/veins encompassing the AVM, then the doctor ‘scooped’ out the dead brain tissue and bad arteries and veins, and reattached my skull and stitched me up. The week in the hospital after surgery was extremely hard for me and my family. After 5 days in the hospital the doctors sent me home, even though I should stay another day or two, but they pushed me out. It was the best decision. Recovery exponential increased when in my own home. Family and friends came to take care of me and help my husband through my recovery. I was out of work for 6 weeks. I wasn’t able to get on the computer until about 10 days after surgery and couldn’t drive until close to 5 ½ weeks after surgery. In the beginning I couldn’t have the TV or radio on in the house and wore sunglasses all the time because I was very light and sound sensitive. After about a week the biggest thing for me was trying to walk around the corner by myself. Recovery was slow and fast at the same time (hard to explain). I had my surgery in late July, 2016 and I don’t think I was fully recovered until spring of 2017 (when I signed up for a relatively tough running race to prove to myself that I was 100% healed!). I went in for a cranial angiogram 6 months after surgery and was told by my doctor that he planed to never see me again! Blood flow in my brain looked normal during the test and there was no need for me to have any restrictions or to see the doctors again.
AVM is rare, but I still think I am extremely lucky. I fully recovered, without any lingering side effects, and I did not have any sort of brain tumor/cancer like my mother. For a disease so rare, TWO women that I went to high school with have little girls that have had brain AVMs. I can’t seem to rationalize this statistic. I am honestly also unsure of what I would have done if I knew I had a cranial AVM ten years before it actual ruptured… brain surgery is not something to take likely and absolutely not something that is not without a TON of risks. Would I have said “take it out!” Or would have I asked to be monitored regularly and keep my eyes peeled for symptoms… I’m not sure. “Symptoms” are not the same for anyone. Hindsight is 20/20, and it’s awful that we are never privy to the outcomes before making decisions, especially when loved ones lives are at stake.
My AVM has definitely made me and my husband more appreciative of life and its fragility. We live our life differently today because if it. We appreciate the little things and the small moments that make life beautiful. We verbally remind our family and friends how much we appreciate them. It has been a couple of years since I thought this much about my AVM, but Paige’s story and others have really made me realize how important life is and how important is it to not take advantage of this precious thing we are all given, for as long as we are given it.
On Super Bowl Sunday (February 2, 2020), Jenna suddenly lost consciousness and stopped breathing. Her dad, Ryan, administered CPR. At the local hospital, doctors realized the gravity and urgency of her condition and had her medevaced with her mom, Kelly, via helicopter to the regional pediatric ICU. There, medical staff found an arteriovenous malformation (AVM) which had burst, causing major hemorrhaging in her brain. Two surgical interventions so far have kept her in the fight. Jenna likely was born with this condition, which sat dormant until that day.
Just the day before, Jenna played in her soccer game, spent time with her friends and family, and showed no symptoms of distress.
Jenna’s, AVM was located on the left side of the brain.The left side of the brain controls speech & mobility.
Her mother Kelly, never left her side and watched her daughter fight for her life for over 50 days!
Kelly told me “ It’s minute by minute, 2 steps forward 2 steps back. Always keeping in the back of her mind, planning her daughters funeral.
Jenna is a total miracle! The Sheehy family almost lost her 2 times. No one working on her hospital floor could believe what she has done.
On March 13, 2020, Jenna was finally strong enough to have the go through another terrifying hurdle. Getting that devil out of her brain.
After an extremely long, fragile survey Jenna’s mother shared this message.
“Jenna is back in her room on the ICU floor and sleeping well. Thank God the AVM is successfully out of her head. She is a miracle and I will continue to thank God for her everyday.”
On March 28, 2020 , after 8 weeks of the emotional rollercoaster no FAMILY SHOULD EVER ENDURE . Jenna, was OUT ! Jenna was released from the hospital and off to rehab. She as a long road of recovery ahead.
Thank you Kelly for sharing your journey with me and now sharing it with the WORLD.
Jenna Sheehy kicked her AVM’s ass - She will move mountains!
On April 29, 2019, Tyler went to school and was picked up by his dad just like any ordinary day. He wanted a ride to the neighborhood park to play basketball with his friends, so his mother dropped him off with a friend and told Tyler: “I’ll see you in a little while.” Less than five minutes later, Tyler sent a text to his mother asking to come pick him up because he had a bad headache. It took his mother three minutes to get back to the park. By the time she arrived Tyler had already started losing function in his arms and legs; his pupils were extremely dilated.
When they got to the ER, Tyler already had blood on his brain. The blood kept spreading over the next couple hours and eventually clotted. Tyler had arteriovenous malformation in the brain (AVM). He was declared brain dead. The doctors told his family there was nothing left they could do. As Tyler’s family sat in the hospital for days, praying for a miracle, they were introduced to a nonprofit organization for organ donation called LiveOnNY. Tyler’s mother knew in her heart that Tyler would want to save other people’s lives if he had the opportunity to do so, and he did. He saved the lives of many.Tyler was an old soul. He gave so much to everyone around him. He taught his family so much about life and made us into better people. This is why they will continue Tyler’s journey in life, helping people because that was what Tyler always did. Tyler’s legacy will forever live on through his family, friends and the gift of life.
I found out about my AVM after I was thrown out of a golf cart with a friend and hit my head on the concrete. My mom wanted to take me to the hospital and I had a CT scan and MRI and they found the AVM. My neurologist told me I should be fine, but IF something was to happen, he told me the stroke signs. He wanted to schedule an angiogram, but scheduled it in the summer since I was in 8th grade. A few months later, I was at a friend's house and we were walking around at a park close to her house. I began to have a horrible headache and my speech was all jumbled. I wasn't sure what to do, but after a bit I started to feel sick and I'm not the type to throw up so I told my friend to call my mother. (My friend's mom wasn't home yet) My mom immediately knew what it was and came to pick me up and rush me to the hospital. I had a 5.5cm bleed in the speech and vocabulary area of my brain. They put me in an induced coma and I had emergency brain surgery. They weren't sure if I would ever speak again. I did speech therapy for about a year and I had a "miraculous" recovery.So, I did great after my surgery. I went back to school and I was back in Honors English 3 years later. I graduated high school and later graduated college with an Associate's Degree. I have lived a normal life. On January 15th of this year, I had my first grand mal seizure. I had to have a second brain surgery on January 27th because there was an "offshoot" of my original AVM. Since I was so young when I had my original AVM removal in 2003, my brain was still developing and I suppose part of it was missed and it developed as my brain developed. I'm having some short-term memory loss and I'm prone to seizures now so I am on a lot of seizure medications. I am having issues with comprehension but my speech seems to be fine to other people. I can't seem to follow spoken directions. Other than that, my motor skills are fine. I'm still in the recovery stage. My neurosurgeon said it may take a year to recover since it's my second brain surgery in the same area and due to my age.
Starting in early adolescence I developed what appeared to be a birthmark under my left eye. My mother took me to my pediatrician, who assured her that it was purely superficial and nothing to worry about. I would also periodically develop 'strawberry mark' hemangiomas throughout childhood, which my doctor again assured us was not an issue.
Just a few months shy of 18 I had the Mirena IUD, a form of hormonal birth control, placed. I want to be clear in stating that I don't blame the IUD for my AVM and subsequent health issues - I believe that the AVM would have become symptomatic at some point in my life with or without the bc.
After I had the IUD placed the area around my left eye began to swell. I began to notice pulsating, pain, and bruit (the whooshing sound in my head). I waited longer than I should have to get these things checked out, but I received my diagnosis in October of 2010, two months after I turned 20.
Altogether I underwent 8 embolizations, a debridement for necrosis and then a skin graft, a craniotomy, and then gamma knife radiation. My AVM, upon the time of the excision, spanned from within my sinus, my face, to the inside of my skull and my dura. The surgery to remove it was extensive and I am still not fully AVM free - 2% of the original AVM is still in my sinus, it was too deep for them to remove without what my surgeon described as a 'catastrophic deconstruction' of my face.
Today I am doing relatively well - my pain is managed and I've been seeing a therapist to help me deal with the aftereffects of this among other issues.
He had a terrible headache for a day. Went to the ER describing it as the worst of his life. His blood pressure was through the roof. They sent him home without a cat scan! Told him to follow up with his primary. He dropped dead hours later. He was 46. Has a wife, 3 and 6 year old kids and it was a sudden and tragic loss that you can never be prepared for.