Hello everyone. My name's Jordan, I'm 27 and my girlfriend, Saori (also 27) had a brain hemorrhage March 1st this year. She is Japanese and we live here in Japan, just outside of Tokyo. It's been a difficult couple of weeks to be sure, with language and cultural barriers adding to the difficulty for me, so I am really glad to have found this fantastic site and hope to get lot's of advice about supporting Saori over the next weeks, months and years as we start our life together.
Saori had an intraventricular hemorrhage caused by AVM, *as opposed to a SAH, but couldn't find a similar forum for her particular condition, so hope many of the same things apply and that you'll still have me!! (I don't suppose there are hemorrhage cliques?) Her speech and motor functions were not affected and the doctors have said she should make a full recovery. The main issue so far has been pain.
The doctors refused to give her anything stronger than ordinary paracetomol and scantily at that. I think this was mainly to do with the stigma in Japan around opiate based drugs and the stupid idea that she might become an "addict". She had to suffer the most excruciating agony I have ever seen, or even heard of to be honest, while the doctors waited for the blood in her ventricles to drain away naturally and told her to "be quiet". I had to watch her literally screaming and wrything in absolute agony for 5 consecutive days and nights before it stopped; I can't even begin to imagine what it must have been like to be her.
For a country supposedly so advanced, many of the hospitals here are simply shambolic. The first hospital we rushed to was filthy, swarming with cockroaches, stank of human waste, and was staffed by absolute p****s (for want of a better word). Japanese doctors can be arrogant at the best of times, but especially to a "foreigner", and my questions and concerns were met with sneers, distain or ignored outright.
After a bit of a battle, her Mum and I got her transferred to a top neurological centre down the road. I was horrified when they said they'd continue the same course of treatment though, but by the grace of god her worst pain passed soon after arriving.
Fortunately, Saori also has absolutely no memory of that time and is improving noticeably day by day. Today she was teasing me about my receding hairline and the size of my forehead, so it obviously hasn't affected her personality (unfortunately!). The staff at the new centre are completely different too and infinitely more kind. Saori is to undergo a non-invasive procedure on the ruptured vessel called "Cyberknife" [ http://en.m.wikipedia.org/wiki/Cyberknife ]*this Monday (19/3) and the doctors have said she will be discharged shortly after.
I'm looking to get as much information as possible to help her from then, particularly what lifestyle adjustments and also what pain medication might work well for her to import in to the country if I have to. Nice to meet you all and よろしく "yoroshiku" as they say over here!