We were pretty much the only ones in the waiting from, which really surprised me considering this is the public hospital system. Still, it worked definitely in my favour because I was quite calm when we got into the NS Registrar's office. He was friendly and informative, and laid out the usual situation regarding cerebral aneurysms in a person my age. Turns out that - contrary to what society thinks - 56 is "young" for an aneurysm, hence they prefer to treat those over 5mm in order to give the best recovery advantage. (My daughter thought it was highly amusing that I was considered "young"!)
There were plenty of not-so-good stats as well, confirming to a large degree what I had already Googled. The odds of a brain aneurysm rupturing may not be high, but that is more because they don't know enough about the cause of them at this time, despite such advanced medical treatment available. The odds increase with age, but size is not necessarily a factor - some very small ones can and have
ruptured. This is the bit I found the scariest:
- 20% of those with a rupture will not make it to a hospital.
- A further 20% will make it there but die before they are diagnosed.
- Of the remaining 60%, more than half will have some residual detrimental effects - such as loss of vision, speech, etc (similar to stroke).
- Only 1 in 5 whose aneurysm has ruptured will have no adverse effects at all.
I asked about restrictions - could I fly, specifically, as I had a trip back to visit friends in NZ booked. No restrictions, he said - again, for the simple reason that they don't know enough about why some rupture and many don't. No point in placing restrictions on something that you have no idea will ever happen.
So, the next stage is a four-vessel angiogram to "better clarify the aneurysm".
Time to ask Dr Google about that procedure!
Hiya. Looked through your FB page to see what has been happening, as I thought I heard somewhere that your treatment has been postponed. Thanks for the clear and detailed description of things to October 12. What's been happening since then?
ReplyDeleteHugs,
Janice
Yes, I rather got overtaken by other matters. The journey will re-commence shortly :)
ReplyDeleteFeel free to drop in to our page on FB. www.facebook.com/AustralianBrainAneurysmSupportandAwareness
ReplyDeleteWe are new and doing our best to raise awareness in Australia as there really isnt any. I was diagnosed dec 2011 with 2 annies and have since had 2 craniotomie's. There are some wonderful support groups in Australian Fb that are closed groups. We are open as we want everyone to see. read, contribute their journey in the hopes of the word getting out about brain aneurysms. Good luck, take care.
Thanks for the positive comments. I actually found a group on FB called Brain Aneurysm Support Australia. They have 307 followers at the moment, and I designed their logo for them. It would be so good if all the support groups could be linked, because - as you so tightly point out - there is so little support available. Which is exactly why I started this blog.
DeleteI would very much appreciate it if you could publicise the blog, because I would welcome stories from ALL aneurysm survivors. I am sure we have some commonality of emotion, but it would be great to get other perspectives.