I am so afraid I can barely stand it. I am a healthy happy person with no issues one day, just a bunch of stress and I wake up the next morning in an ambulance on my way to the hospital after having a seizure! I was told over the phone that I have a very small superficial avm in my temple and should see a neuro surgeon. What does that mean??? Do I need surgery??? The MRI was horrible so how will I ever deal with brain surgery? I am in a panic yet physically I feel fine. Supposedly my avm has never bled just maybe stress trigered the seizure. I want to live and see my grandson grow up and be with my awesome kids and my super great husband. Please God don’t take me from them!
Hi Wanda. It is very scary to find out that you have an AVM. However, take a look at the title of this website. It does not say AVM victims… it says AVM SURVIVORS. There are almost 2700 of us on this site and you are no longer alone. By the way it is only natural to be frightened…that is one of the reasons this website exists…to give support.
Absolutely right Barbara!! It is so very scary and of course it is a shock and strikes fear deep in your soul, but we are survivors! Wanda please know you are not alone. I felt the very same way after the discovery of my AVM. I was a normal 30 year old who had nasty migraines. I woke up in the middle of the night had a seizure and took myself to the ER the next morning. Everyone was sleeping and I had no idea what happened. I am very sorry that you were told over the phone that you have an AVM. It just seems very cold and did not help the ‘wait what!’ reaction and all of the confusion that snowballed after. There are a bunch of helpful discussions here and if you have questions please ask. Welcome to the family. We might be dysfunctional, but we all care and are here to give you strength and a virtual shoulder to cry on.
Hi Wanda, The first seizure I had was a grand mal too. That was 4 yrs ago and I’m still here. Having said that; it is scary, but it doesn’t mean you are going to bleed any time soon. And even if that were to happen…the doctors have a successfull way of getting that under control. There are many of us here who’s avm’s never ruptured at all. It’s scary when we first find out that we have one. There are different types of treatments for these that are very, very successfull. Be thankfull that they found it now and that they can fix it. It doesn’t seem much to be thankfull for but, you didn’t have a stroke or anything like that. Feel free to ask me anything. I’m happy to help
the news is equal to having the air sucked out of your lungs…that’s from a parent…scary isn’t enough to describe our feelings… but everyday we take baby steps, learn and listen…family and friends are the center of your world…my oldest has an AVM and my youngest (25) is going for a CT Scan in couple of weeks due to migranes…hasn’t even hit me yet. Be strong, we are a small global community but the brain has the attention of the finest doctors in the world they are connected and they will find ways to control and treat the AVEMaria!
Hi Wanda, it is very scary. If you read my site you’ll see I am currently going through my treatments. You are going to feel overwhelmed sometimes, you may fear for your future and all of these fears are expected and legitimate. One thing to not fear is that of being alone. You have come to the right place, on this site you will find other’s like you who share have shared your fears and concerns, if you continue reading our stories you’ll find stories of faith and hope that hopefully will bring you comfort. For me while my friends on this site may not have been holding my hand through the treatments and subsequent recovery…in my heart I know they are with me. Best wishes to you Wanda. Take a deep breath, let it out and learn what you can about AVM’s, find Neurosurgeons in your area who are familiar with this rare but highly treatable disorder.
Wanda, I believe Jamie worded it very well. He just recently went through this himself.
When I first found out about mine (in 1991), I bawled like a baby. I found out how bad mine was in a letter. Not knowing and not understanding things, I believe is our worst enemy. Fear seems to set in immediatley... thats just our human nature. Once we learn more of our condition, no matter what it is, then we can concentrate on what we can do about it. Welllll... Those are my thoughts on it any way. :) I hope you are doing better today.
HI WANDA WELCOME TO THE SITE AND AS OTHERS HAVE SAID YOU HAVE COME TO THE RIGHT PLACE WE ARE ALL HERE BY GOD’S GRACE ON OUR LIVES WE ARE ALIVE AND DOIN WELL TO TELL HOW STORY AND GIVE YOU THE SUPPORT YOU NEED. ASK ANYTHING YOU HAVE QUESTION’S ABOUT I AM SURE WE CAN HELP. LOOK AT GOD’S FAVOR ON MY LIFE I HAD SURGERY AS WELL AND DOIN GREAT WITH VERY LITTLE SIDE EFFECTS, KEEP YOUR FAITH AND TRUST IN GOD HE WILL BE RIGHT THERE WITH YOU AS WELL AS HIS HEALIN ANGELS. IT’S BEEN ALMOST 4MONTHS SINCE MY SURGERY. I WILL BE PRAYIN FOR YOU GOD BLESS
Your story sounds like mine. Find a good neurosurgeon like Jamie has said. We will be here for you. Do not be afraid.
Thanks so much everyone, reading your posts has warmed my heart. I got a bit of better news friday. I went to the surgeon and he said my AVM is very small and feels it didn’t cause my seizure. He feels it was my newly diagnosed sleep apnea along with stress. He scheduled me to go to Lexington KY to the University of Kentucky Medical Center for Gamma Knife this coming Thursday. The part I am afraid of now is that I have to get an Angiagram while I am there, Has anyone had one? Is it scarry? I know I sound like a big baby but I can’t help it. I had some people praying for me while I was at the doctor and all of a sudden I got a sense of peace that I would be ok. Is the Gamma Knife awful or is it ok?
Three VERY crucial points regarding ur avm: 1)very small 2)superficial 3)UNRUPTURED:) While panic and anxiety are very natural initially, now u must focus on finding the best neurosurgeon and best plan for treatment:) As frightening as a crainiotomy(open surgery) sounds, in my opinion, it is the insta-fix that most of us survivors could hope for!(assuming no/limited deficits) I wish u the very best in ur search for treatment and pray for a wonderful outcome! -GK
Hi again Wanda, I’ve had an awake Angiogram. There was discomfort with the initial puncture of the catheter and when the MD injects the dye it burns. I have a little trouble with confined spaces but was happy to find the imaging unit was open, of course if needed ask your MD for a mild sedative. It’s alright and expected to be nervous; knowledge for me has been the key in helping me to alleviate my concerns so don’t be afraid to reach out to us. 