looking for people going through something similar.
I have a vascular malformation on the left, middle and back side of my brain. Its 11x7 cm. Seen a bunch of doctors and the general consensus is to not touch it all together. Im lucky enough to never have experienced a hemorrhage. Im on Keppra and Vimpat for the partial seizures I got. Keppra helped alooooot but i was still getting them so doc recommended i get on Vimpat.
I just wanted to see and talk to some people going through something similar.
since i cant do anything about it, its like im always scared its gonna blowup on its own any minute.
The meds have also played a role on my mood and behavior.
Idk, down to talk to someone going through something similar.
Welcome to our community! Sorry to hear about what youāve been going through.
My AVM is in my right prefrontal cortex. It has caused two brain bleeds. I can relate to the feeling of helplessness; while my team has been confident to operate, I have had five procedures to treat it and I still donāt know if it has been obliterated yet. I too am scared that my AVM will rupture again. I was certain in 2020 that it was gone, only for it to present itself with another bleed that year.
Iām not on any medication so I canāt speak to that aspect, but I hope you can continue to manage your symptoms and keep bleed risks low.
Welcome to AVMsurvivors! Itās great to have you, though a shame that we meet under these circumstances, as we always say.
There are a bunch of people here who have been given the same advice as you: best left alone. Most of these are people who have a @BrainCerebellum AVM ā often a bit too deep or a bit too vital to go digging around in that bit of brain. The top and bottom of it is that youāll have a better life by not trying to fix it: you perhaps wouldnāt value the side effects of the surgery.
Equally, for some people, operating is a bit borderline as to whether it is best to go ahead with surgery of one kind or another or to leave it alone. One of our moderators, @Lulu1, has elected to not touch her brain AVM and is focussing on everything else that life brings with it rather than letting her AVM rule what she thinks about.
So youāre not alone at all. Thatās what this place is for. Hopefully some of the folk Iāve just mentioned will share a bit of their experience and how they approach life. (Theyāll have received an email because I mentioned them in this post.)
i canāt begin to image what youāve been going through.
My fear has always existed in thoughts. You on the other hand have dealt with it face to face. To me you are a hero.
5 surgeries and still no definitive answer sounds like it would be hard on anyone honestly. I completely understand where that feeling of hopelessness is coming from. I hope that the bleeding is something you never have to go through again.
Hey Samabla. Lovely to (virtually) meet you. Iām Lulu, 52, live in the UK and have a right-sided cerebellar AVM. I didnāt know until I was 28 when it was picked up in an MRI scan. My AVM also caused to me to suffer with recurrent hydrocephalus and at 14 I had an operation to put in a Shunt. Imaging at that time wasnāt good enough to āseeā my AVM and the doctors told me I had a ābirthmarkā on my brain. I never worried about this until 15 years or so later when it was identified as an AVM. I felt sick when they told me but never felt as if treatment was for me to be honest. All the doctors I have seen also advised against it as being very risky with little chance to success. I have been extremely lucky in life and donāt suffer much in the way of deficits. Obviously I still have the hydro and as I get older my sense of balance is a bit dodgy. I also had a suspected brain bleed in 2024 and a stroke āmimicā in 2016. But I got over them pretty quickly and other than that Iām the same me there has always been. I married and had children, I am fit and healthy (apart from the obvious) and I am thankful every day for the position Iām in. Take care. If I can be of any further help please do let me know.
My doctors refused to operate on my AVM until after it ruptured. I think it was five years before it finally ruptured. Once it ruptured and nearly killed me, they decided it was an imminent risk and opted to remove it during a cranioplasty where they put my skull back on.
My story is one where I moved on with my life after discovery of my AVM. I didnāt make any significant lifestyle changes until after the rupture and removal of the AVM. I was a daily smoker and drinker until the rupture put me in a coma for 8 weeks. Itās easy to quit drinking when you are in a coma.
Good luck making some progress on treating your AVM. I hope you will find a treatment option before you have a rupture. Rupture is a life-threatening and life-changing event
i can relate to a bunch of things youāve brought up.
Im still a daily smoker, even though the doctor has told me its not something that i should be doing. Not much of a drinker so havnt had any issues cutting that off.
Stopped drinking recently, kinda had an affect on my friends. They drink on weekends.
do u mind me asking how directly related the rapture was to smoking? The doc has told me about the rapture and itās likely hood of it happening, and thatās a fear thatās been bubbling up inside of me more and more over the years
I cannot say with any certainty how much direct affect the smoking had on the rupture. I was in the middle of having sex when the rupture occurred, so strenuous activity. I could feel it happen more or less and then suddenly I had major Stroke symptoms. I smoked about a pack a day prior to the rupture. Iām sure it aggravated my AVM because it messed with my blood pressure
Idk if the two are related, but about a year ago i was driving back from the gym when i lost control of the car due to a partial seizure. doctor told me it had to do with my blood pressure going up after a work out.
I believe, as far as having an AVM is concerned, that smoking spikes our blood pressure. So that is why we are advised against smoking. I was told to avoid smoking, alcohol, caffeine/coffee, chocolate and generally to avoid straining: and it makes sense that that might include lifting heavy weights. Some people have mentioned being careful to avoid straining on the toilet and I remember another being advised ā as @themachinist can attest ā to āgo easy in the bedroomā. However, you need to get out of life the things you want to get out of life, so if avoiding all of these things would make life just too bland then you could choose to keep some but thereās an increased risk of rupture. Thereās a balance.
To tell you the truth, if I were still able-bodied I would be in the gym. While your blood pressure can temporarily rise from a strenuous workout, over the long term your average BP will actually be lower from regular exercise
