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Hello from new member Jordan in Japan.


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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!

Edited by Skippy
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Hey Jordan

Welcome to BTG. I've not had experience with AVMs but it sounds like the aftermath is pretty similar. So sorry that Saori is going through this. The opiate based drug thing could be a blessing in disguise tho - I was put on codeine then tramadol and it was worse than the actual bleed - they caused analgesic headaches which were horrendous. Morphine made me vomit which in turn hurt my head. Plenty of fluids (water) can help with the headaches as well as the paracetomol.

I hope Saori continues to make a good recovery - keeping her sense of humour will help in her recovery.

Please keep us updated.

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Hi Jordan, welcome to BTG!

My sister lived in Japan for 4 years. It must have been hard for you to be a foreigner speaking a different language and trying to ensure your loved one was getting the best care. I can't imagine how scary that was and to see her in so much pain. I didn't have an AVM but I read 'Stroke of Insight' by Jill Bolte Taylor who writes of suffering from an AVM and her recovery. It's an amazing and inspirational read. If you google her name you will find her short lectures on the Internet. They are about 20 minutes long. Have a look.

Sandi K. Xoxoox

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Hi Jordan and welcome its great to hear that Saori has kept her sense of humour and that she will be getting the treatment she needs soon. As with all brain surgery tiredness and fatigue can be real problems in the first few months of recovery but as Sami has already said plenty of fluids are a great help with reducing the amount of head pain. Please let us know how Saori gets on.

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Hi Jordan, welcome to this site.

I'm sorry to hear your girlfriend has been so poorly and that the experience of the hospital etc was not up to what you'd want or expect. I hope all goes well on Monday and that Saori's recovery goes smoothly. It would be lovely if you could let us know how she gets on.

Take care,

Sarah

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Thank you everyone for your warm welcome and your advice! I hadn't heard that about water yet, that's very useful advice, as is putting me on to *Stoke of Insight, thank you! Will check that out tonight and will be sure keep you posted with how she gets on tomorrow. Tiredness and fatigue certainly look like they're going to be big issues, but will make sure she's taking it easy, (which won't be easy). Sense of humour definitely still in tact: she was telling me just before that I should be the one having Cyberknife to fix the funny shape of my head. And I thought these traumatic, near death experiences were supposed to make you a nicer person!?

I have been blessed with a lot of support through all this, but being able to hear from people who have been through this themselves and actually KNOW what it's like really means a lot and helps me understand what its like for Saori, so thank you so much for taking the time to write to me.

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Welcome Jordan! Glad you found this site - so much information and support to help you and Saori get through this. Great to hear her sense of humor is in tact! :lol: She is lucky to have good support from you and her mother - I think this is also crucial in our recoveries and can make a huge difference! Just don't forget to take care of yourself along the way!!!

As the others have said, drinking plenty of water is soooooooooo helpful. I was told 3 liters a day :yikes: which seemed like an ocean to me, at the time!

Will keep you all in my thoughts and send good energy your way for her procedure with the cyber knife!!!

Anxious to hear more from you and how you are all getting on.

Big hugs,

Carolyn

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Hi Jordan

Sorry to hear about what your girlfriend Saori has suffered.

I hope we can all help on here, but you can find more information about AVM on the Brain & Spine Foundation website where they also have forums too where you might find further patient experience of AVM in particular.

Lots of water and reduced caffeine seems to help ease headaches, along with lots of rest.

I hope the procedure on Monday goes well for Saori and her she progresses well with her recovery.

good luck and take care

Kel x

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Thanks Carolyn, WinB143 and Kel! Such a caring lot on this website, helps a lot.

Saori didnt have the cyberknife treatment Monday as was said, just a whole of scans and preliminary tests. Today is a public holiday in Japan, so I guess it will be tomorrow. Communication not really a strongpoint in the medical profession here.

Thank you very much for the link though Kel, will definitely check that site out.*

And 3 litres of water a day eh! I'm going to go on another fattening up mission soon: GOMAD (gallon of milk a day) so might make a contest out of it!

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Saori has the cyberknife treatment Wednesday and was discharged from hospital the next day! Couldn't believe the quick turnaround! 2 years before the treatment can be said to have been 100% effective, but chance of a re-bleed in the interim very low apparently.

She's improving noticeably day by day in terms of headaches and memory. Only thing she's finding difficult is her perception of time. Says that if she's with me, it's fine, but when by herself after two minutes it will suddenly seem like 10 hours have gone by. Did any of you experience that??

Thanks again for all your support eh!

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Jordan I had a bit of a time issue in the beginning...mayeb first 4 months. I was always very prompt but I could not get ready and judge my time or mangement of time well at all. I would have 30 minutes to get ready and spend 15 minutes looking at all my white socks. I could not just get dressed it was a big process and I needed a nap when I was done.

good luck. Mary

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I was in dreamland until I had shunt fitted for hydrocephulus ( can never spell that word)

Cheer up and don't let things get you down sing g/friend a song and make her sing along with you..it helped me I know it sounds daft

but it helped me truly...mind you I only know rude songs lol

Keep bright if possible...and remember you need rest also

All the Best

WinB143 xx

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