I discovered my AVM in August 2017 almost by chance, I was 26. In May same year I started to have constant headaches which no painkiller could stop. Plus eyesight echoes occurred from time to time. I found it strange but kept repeating myself “this is all because of stressful project and too much work on computer” as , by the way, was “confirmed” by first doctor who prescribed me relaxing massage and sedatives… In a month just in case I decided to go for MRI as symptoms didn’t go away. That is when for the first time I heard words that supposed to scary sh*t out of me “there is a ticking bomb in your head, and if I were you I would rather hurry up doing something about it”. Of course, as probably for most of you here, this was the time to cry, reflect on life for a bit and then start looking for a solution to make lifetime decisions.
After going through angiography I was diagnosed with arteriovenous malformation of approx 3.5cm in diametr in the parietal lobe (Spetzler Martin Grade 3) and right anterior cerebral artery aneurysm at least 4-5 mm in size. Crazy, right. But I believe I was very lucky - it never bled, got no serious symptoms.
I talked to more than a dozen of doctors across countries to gather as much information as it was possible to bare. Read probably hundred of articles, blogs, watched dozens of interviews, conferences and vlogs. And as many of people wrote here every single opinion was different from the previous one. I got as many suggestions as one could possibly imaging for my condition and in different variations. I got operable and non-operable, congenital and acquired, etc. characterisation of my AVM. Doctors advised me to operate it and to just wait-and-see, craniotomy with and without embolisation, with possible follow-up radio-surgery treatment as well as solely treat this thing by embolisation.
After an attempt to live normally trying to stay with It as is (I usually practice lots of sports and travel every second week) I decided I just couldn’t live with it as thought of sudden bleeding didn’t leave my mind for a second especially it was itching at my happiest moments. So I had to do something with it and after I carefully considered all the risks I decided to go for a treatment. I of course was thinking in favour of embolisation (as the least “invasive” option in my case, though only one doctor said it may be possible to cure it just with staged embolisation).
But to be frank I didn`t choose modality but I chose doctor. After speaking to most of the doctors specialising in bAVM in Germany, Ukraine, the US, Israel I only felt deep trust to Professor Rene Chapot (whom I found on this forum reading through some stories).
I wrote an email to him, he replied directly quite quickly and invited for a consultation. He was first professor who didn`t take a penny for an hour that he spent with me explaining how he sees my treatment options. He was so passionate about the topic that it was so obvious he loves his job and does a lot of practice and research. He and his team treated lots of AVMs which just reassured me that I am at a right place.
So I went through 3 stages of embolisation at Alfried Krupp Hospital Ruettenscheid in Essen, Germany. Each stage with few weeks break. After each procedure I got temporary loss of peripheral vision on the left (for about a week) due to swelling. Now after a year since discovery I am recovered, no major deficits (just tiny blindspot which makes troublesome reading numbers or counting rings on Audi logo), NO pulsation in ears - so silent in my head now. Aneurism already after last embolisation started to shrink. Waiting for a check up in 6 months. Hospital was amazing too, staff very friendly and helpful (some speaking Russian, majority speaks English). My AVM and aneurism seems to be cured with solely embolisation and fingers crossed for my last check up.
Please feel free to reach out to me in case you have questions and can make use of my journey and experiences. Happy to provide more details and photos. I really owe to this community as here I found my rescue!
