Hi I’m just looking for some support and advice, I have been diagnosed with a left cerebellar AVM on my brain which has been growing for many years 17 at least without being noticed, I have been suffering with extremely bad migraines where I lose my right side, vision and speech. I was sent for a CT scan where it was noticed, my AVM has grown half the size of my brain which means it’s too large to get rid of, I have been told that the surgeon can shrink it with glue but it will continue to grow also he said it will take me to lose my mobility before he can do this procedure again, I am receiving my procedure of glue in October, this is causing major anxiety and fatigue, also I am at risk of a bleed at any time has anyone been in a similar situation?
Hi Rosseee, Hope your doing ok, This kind of news is very tough. in this world nothing is for certain, The docs that are looking after you are the best docs in the world saving lives daily, There are many here that have had embolization (glue treatment) That you have mentioned, Just to add a little detail on AVM’s they are formed as your brain is forming in the womb, so you have lived with this since birth, yes you have seen some symptoms in headaches/migraines, But please do try to keep positive, as weird as it sounds one of the things that kept me on track was bob marley three little birds (because every little things gonna be alright) , over and over again in my head, Now you know about your AVM the hardest part for you will be the time and waiting, no one can predict the future, so try to not worry about things you have no control over, on the plus side they are going to try treatment and this is could be the start of good things.
I’ll keep in touch and chat to you soon
Hi Martin thanks for getting in touch, it’s really just a lot to take in when you have been fobbed off from doctors and given tablets to take for years and told it’s just a migraine, I was told that’s there is an 80% chance of a bleed in the next 5 years so I am hoping that inserting the glue can slow it down, it’s such a horrible thing to live with I’m still in shock knowing that it’s never going away
Welcome, @Rosseee! It’s never a great thing to need to find this site but it’s great you found us and I hope we can help you a little and encourage you along the way.
By way of my first bit of encouragement, I can tell you I was just as alarmed by the sudden turn in the road that life took, about 7 years ago (I can’t believe it is nearly 7 years!!) However, I do feel that as we process the information, we can get to a more “accepting” less “OMG” situation than right at the start.
I’d say one of the main things that helped me to get through the waiting for my embolisation procedure was to buy a medical bracelet and put my medical details and my wife’s contact no on there, and on my phone. That way, I felt that if I was found to be in trouble in a place where nobody knew me, there was a better chance people would think “stroke” and get me to hospital sooner.
Whatever it is that you’re worried about, just feel free to ask. This is the support I got when I arrived here all those years ago (and actually, it was Martin who was among those who welcomed me!) and this is the support we can give to you.
Ask anything you want. If we can help by sharing how we got on, we will.
Very best wishes,
Yeah I agree with Richard, I didn’t know anything till my bleed, and I had a seizure 10 years before my bleed which led to a CT scan and 6 month ban from driving but was told everything was fine and go back to your life etc …… problem with AVMs are they are rare and hard to spot unless you have a specific type of scan on your brain, they can form in other areas but obviously brain is the case here, do visit your gp and discuss how your feeling and perhaps they can prescribe something that will help with that side of things or maybe even refer you to a mental health professional if you are struggling with the whole thing, remember that no one knows what tomorrow may bring, keep positive and get plenty of rest.
Great advice Martin; power of positive thinking. “Drive” by Incubus is my song; “Whatever tomorrow brings, I’ll be there”. Music is linked to the memory, like smell, and I have found it can be a driver (no pun) of my mood by waking up certain neural pathways; so I am currently trying to re-program my music/mood link as I think it is messed up at the moment and my actions don’t match the music I am listening to (sadness comes with happy actions for me sometimes). I have been consumed by listening to 80s and 90s music the last few years and I don’t doubt it is due to my brain recognizing that as a time before all my AVM symptoms starting flaring up. Trying to wake up my old carefree mood.
Hi Rosseee, glad to see you found this place as it took me a while post AVM diagnosis (after a manic induced rupture) and it has been a great source of comfort by being able to see that despite it being a rare condition, you are not alone.
I am a few months ahead of you in that I was only diagnosed this past March having had all kinds of symptoms for at least the last 15 years; a headache so constant that it was part of my identity, focal seizures diagnosed as panic attacks, tendency to get manic, OCD etc. Luckily, this mania and OCD isn’t all bad in that it is diriving me to seek as much information as I can find out about the brain. My AVM (in my right temporal lobe) triggers my personality traits and these traits get supercharged when my AVM is “angry”. Unfortunately my AVM has been awfully grumpy lately
I have had two embolization procedures already (April and July of this year) and have another coming up in a few months, then followed by mystery box 1 or 2 (radiation or micro-surgery). Try to take the positives as best you can and instead of looking at it that you have found this unknown AVM, look at it that you caught it “early”. The majority find out the way I did, with an ice pick to the skull that is a brain bleed. I would be happy to share my embolization experiences, as knowing that the feelings you have post surgery are normal and to be expected really helps set the mind at ease. Take a quick look at the book “The Brain That Changes Itself” as I just started reading it and knowing how the brain works; neuron’s, receptors etc, is making me feel better about being a “puppet” to my AVM.
Take care and try to remember to not go down the negative rabbit hole because that is just what the AVM wants you to do.
Hi Rosseee, my name’s Michael. I was diagnosed with a right cerebellar AVM 7 years ago. I had a gamma knife procedure. After four years, it was 90%+ gone so last December I had a second one to seal the deal. I takes 2-3 years to heal so we will see how it goes.
I remember well learning of my AVM. I live in the USA now, but at the time, I lived in the Middle East so that added to my stress as I’d have to travel to Qatar and Oman from the UAE occasionally and I thought if I had a bleed, I would not know which hospital to be taken to.
I wrote on a business size card so I could hand it to someone that said, "I’m having a cranial bleed. Please help me get to XYZ Hospital. As I drove to work, I’d think, "if it happened on the freeway, should I leave my keys in my car so someone could move it? All kinds of weird stuff.
As mentioned earlier, these are congenital. Knowing it’s been that way for 50+ years helped me put it in perspective. I had two flow related aneurysms which were the concern.
I’d ask them about gamma knife options. For humor, if they’re going to put glue in your head, I’d ask for SuperGlue vs CrazyGlue. (Both brands of Cyanoacrylate glue in the USA).
I never did have a bleed, but it was discovered because I had nerve pain from the top of my head across my right eye from AVM pressing on my 5th cranial nerve.
I wish you well as you start to navigate your journey,