You are definently not alone, you are welcome to check my post history to have more in-depth account of my experience.
The “condensed” version is - in May 2017 I was diagnosed with a roughtly 4cm left occipital brain AVM. There were years of gradual decline with the year preceding diagnosis being a very intense decline. A visual field test at the opticians found that I had lower right sight loss in both eyes which then led to an MRI finding my AVM. October 2017 (I think?) I had my angiogram at NHNN, London (couldn’t recommend more highly). This angiogram confirmed that my AVM is very deeply ingrained in the lobe, highly aggressive and was causing perminent brain damage (hence the sight loss).
26/01/2018 I had the embolisation, they decided to try to embolise the whole AVM since the vessels surrounding my AVM didn’t look like they would hold up much longer - a severely disabling or fatal rupture was imminent. They managed to reduce my AVM to less than 1cm. Unfortunately during the embolisation I had a stroke resulting in me losing most of my right hand visual field in both eyes. Due to fast work of my neuro-radiologist They left the remaining part of my AVM pretty much the only working part of my left occipital lobe - controlling my essential right central vision. I get about independantly without aids (although still have difficulties).
On the 20th this month I will have an angiogram to determine what to do with my remaining AVM. Since it is very high risk they wish to do gamma knife but the angio will confirm whether I am a candidate.
My AVM has caused me to have occipital seizures only affecting my vision. My neurologist has put me on Lamotrigine which has significantly reduced these seizures from several a week to a couple a month. I will be increasing the dose until I reach a dose which completely prevents these seizures. Aswell as the sight loss, the stroke has caused me to have problems with my short term memory, slower reaction and processing times, lower energy levels where I sometimes slur my speech and sight goes blurry and has affected my co-ordination. Focusing on working on my computer too long makes me very tired and gives me a migraine, other than that I have been migraine free since my embo. I have found out that I have level 3 hearing loss in my left ear that might be due to the AVM/stroke/vascular issue too.
Do remember though before panicking that this was a extremely rare case - I was given a 5-8% chance of a stroke which is pretty small all things considered. Since it was so aggressive every specialist was suprised I was still alive and was diagnosed in time. I feel so lucky it happened in theatre where they could control it rather than it bursting outside of theatre and likely dying. I have no regrets, I am alot happier in life since my embo, I feel positive and I have developed significantly as a person with plenty to look forward to.
In terms of worrying about the “ticking time bomb” this is the motto I live by - don’t worry unless something happens to worry about. I think worrying about the possibility of sight loss/stroke before my embo was actually worse than having the stroke and then taking steps to move forward. It’s not ideal but you get through it. It isn’t a life ender and I have plenty to accomplish in life moving forward and still am able to succeed in the goals I had before all this AVM stuff. It’s just a slower route to the same destination. Now I won’t waste my time worrying about possibly losing the remaining right side vision and becoming legally blind. If it happens then I will deal with it then, but right now it is only a possibility and not a certainty. Knowing I have a second chance at life and having my life essentially saved has completely changed my view on life. I appreciate life and the little things so much more. I think I will have a richer life than I would have had if I hadn’t had this all happen. I’ve had the chance to think about what I really want and my priorities - I will not coast through life.
If you had told me a couple years ago that I’d have a stroke, over radiation causing me to lose half of my beautiful thick hair and that I’d break up with my boyfriend I saw myself marrying and live with my parents for over a year unemployed I’d go into depressed-panic mode like my life would be over. Crap happens but we are stronger than we think, if it happens you find ways to cope because you have no choice otherwise. Life won’t be this tragedy in reality that we think it will be in our heads.
More than welcome to PM me to talk more and I’m happy to meet up in London too to chat more, we can exchange details in PM if you’d rather talk on another platform too. I’m here for you whether its advice, to vent, someone to listen and give emotional support or just have a laugh and raise your spirits
Couldn’t have felt safer in NHNN’s hands, amazing hospital staff in general, fantastic specialists - they went as far as to have 2 national meetings to appoint the best neuro-radiologist to take on my case and to decide what the best course of action was.