So, short recap.
When I was 19 I got a massive epileptic seizure and after 5 months of examinations they found a big AVM close to the motoric and sense area of the brain, about 5x4 cm. Got put on epilectic medicine and was gonna do a brain surgery (“but go home and spend Christmas with your family first… just in case…” - doctors words). After that, they contacted USA, Boston, where they had proton radiation therapy and could treat me. Since Swedish healthcare is “free” this was shut down due to the high cost and the doctor literally told me “not to awaken the sleeping bear” (Swedish saying). A few years later, after an angiogram the doctor told me that they HAVE to treat it since the AVM had grown. The same machine that they had in Boston, was now available in Sweden. In 2017 I did the proton radiation therapy. To be honest, I don’t remember much of these years since I was panicking over dying, trying to live every day at the same time as combating depression, basically.
The doctors told me to not do any extreme sports, like parachute or scubadiving. No roller coasters, no heavy drinking or smoking. Which I absolutely didn’t see as a problem.
Till I started to travel and fell in love with the ocean. I lived on a small island in Asia and met my boyfriend, trying SO hard to not get into something serious, due to the AVM. But, life happens and I fell in love with him too. He was a scuba instructor and my heart ached after being able to go with them. I did anyway, snorkelling above them, sometimes.
THE DAY OF THE CALL, June, 2023
After travelling the world, the both of us settled down in Sweden due to Corona and we both started to study. The day of my final exam the doctor called me BEFORE my presentation (I was super nervous) to tell me the results after my last angiogram.
I thought - WHY now?
But she said, it’s good news and it will go quick, don’t worry.
She said that I don’t have an aunerysm anymore. The radiation therapy worked (although after 6 years) and I don’t need to do another treatment. I’m basically healthy. After 10 years… I’m actually free!
I couldn’t believe or understand her words. I asked what happens now and if there are any regulations, as before. She told me that we’ll do an MRI in 4 years and no, just no smoking.
THAT means that one of my dreams has come true - I will be able to scuba dive for real!!!
AND I can go to an amusement park and go in roller coasters till I puke!!!
Mini me inside of me couldn’t be happier!
It’s been very tough 10 years, dealing with this. But I’ve always been very positive.
I want to thank myself for that. For never giving up. For following my dreams and being strong when there was barely any support to turn to.
I’ve finally reached out and go to therapy to deal with all emotions, something I should’ve started yeeeears ago. Very much recommended.
Also because there has been a switch in perspective - maybe I actually CAN create a family (something I didn’t see as an option before, due to the AVM) and start a new career! Buy a house, settle down. SO many possibilities! A big celebration are in order, but first - get a job so I can throw a nice party
I’m 30 but it feels like my life just started - again!
Always keep a strong, positive mindset and we can overcome almost anything!
Prayers and love to all my fellow AVMers!