Really scared. Can AVMs damage you without rupture?

My AVM is symptomatic. I have had focal seizures,

I know that a rupture can be devastating. But what about other forms of damage? Mass effect and lack of oxygen and the progressive neurological damage that some cerebral AVMs can cause. Does this progressive neurological damage lead to the brain slowly dying? So many questions.

Can these AVMs cause fatal strokes without bleeding due to lack of oxygen or issues with the blood flow or by pressing against part of the brain stem. I’m really scared.

Hi there,
It is scary. But although avms can cause damage without rupture, I believe these outcomes are very rare. Do you have reasons to think that you are experiencing neurological damage?

Hi Eyebrows, I have to agree with Sophie’s words here and in all my years as a member and moderator I have not seen these affects that you mention in any other member and here we have over 8000 members from all over the world. It would be super rare, But I would advise you to speak to your doctor about this, They can refer you for counselling if you need the support and they can also give you the medical facts on your specific AVM, They can reassure you that you will be fine. Having an AVM is a scary thing, But as long as you take it easy and try relax then you should be just fine, But please let a doctor tell you that :slight_smile: , Take care

Martin

No, I was just in panic mode and reading a lot about AVMs. Just struggling to deal with it. It seems like it’s different for everybody. I see people say nobody can predict when it can rupture and then someone saying they got told they were expected to have a rupture/not long left.

I know it’s the Doctors I should be talking to about it. I just panicked, Googled Cerebral AVMs to find other stories/people with it and read nearly everything that came up.

My son has had some symptoms relating to function as a result of pressure on surrounding tissues from his AVM and from the AVM blocking some connections. All I have to add.
Take care :slight_smile:

I should start of by clarifying that my neuro-radiologist told me my case is a “one in a million” one, so this is very rare. But I am an example brain damage due to an AVM can occur without any rupture/stroke/intervention.

Because my AVM was “incredibly aggressive” it was starving my left occipital lobe of blood causing brain damage where it was positioned. By the time I got treatment I lost quite a fair amount of my lower right visual field in both eyes. I have been told it is expected the damage was gradual probably over the past few years. I did reach a point where the pressure became so much my migraines became more and more frequant to the point they were daily - at which point I had a eye test that led to my AVM diagnosis. I was told that I was a high disabling or fatal level rupture risk at the point it was found so I am glad I made a fuss and it was found in time for treatment.

I really don’t feel like re-telling my story but I became symptomatic without a rupture (I experienced stroke-like symptoms (left side weakness) but my body began to recover within 48 hours. I was so scared I choose a preemptive intervention (embolization) that did not go as planned. That was two years ago and I have been stable since (thank God)!
I think cerebral AVMs are so rare that there is not a consensus on what to do if there is no rupture or sympotomns.