This question is something I sometimes wonder. I have a 8cm long brain AVM in my left side, covering 3 lobes(occipital, parietal and temporal) and both my designed neuro and Barrow had tall me is impossible to treat as “we would have to take away a part of your brain for it to go”… and it’s frustrating.
But I keep reading stories of people who were deemed “untreatable” first time but could get treated years later as technology advanced.
I’d like to heae more of cases like that like… How much did you wait? Why was it untreatable but then no? How was your experience?
I’m giving it 20 years for my case to be treatable, idk if Im to hopeful or hopeless lmao… (I don’t wanna die :'3)
Just try your best < even typing that for me is difficult to say to someone in your place
To put time into some sort of perspective, the longest fully occluded AVM at Barrow done with a embolization was 5 years prior to mine. I just had an angiogram, it was 4.5 years down to the day since my hemorrhage then embolization - and, I’m still 100%
I haven’t been on here much lately, this stuff is tough for me to hear/read
I waited 20 years for technology to move on. They said it would cause too much damaged at the time of my haemorrhage to operate. I think it was temporal occipital area. Technology moved on quickly with gamma knife being invented but no one suggested it to me for nearly 20 years. I sometimes think they forgot about me. I was on regular follow up for epilepsy with a physician but not my AVM. I just asked one day if I still needed to take precautions as it was so long since my haemorrhage. It was treated within a few months.
