Would be cool to meet anybody here from NZ as it can be isolating at times!
Originally from NZ, way, way down south, but I now live in Oz. Came over to Oz 30yr ago, never been back.
ABSOLUTELY!!! This is not a common occurrence. I have found some people who have had neurosurgery, but nobody who has been through exactly the same thing as me. I have found that everybody’s experiences in this area seem to be different, there are similarities for some but location, size and symptoms can play a huge role in any outcome or treatment plan. Some people can have treatment and recover relatively OK, but then for others the outcome isn’t as positive. It seems there is very little in the way of a direct correlation from one patient to another.
Many years ago the theory used to be that certain regions of the brain had complete control of certain bodily functions but it is now understood that this is not the case and differing regions of the brain interact with each other to make bodily functions occur. If any one of the neural pathways is damaged those interactions can be impaired. I’ve often explained it like this "In science there is a commonly used theory, A+B=C, but when it comes to neurology A+B=C is too simple, there’s just too many variables. For me it’s more like A+BxC-D/E F…and all of those variables vary each day. Some days it’s the weather, some days it’s bright light, some days it’s medication, some days it’s the heat and some days its a combination of each and every one. Some days that’s manageable, but some days it simply isn’t and I found that REALLY frustrating. Trying to plan things is damn near impossible, I find I have to go with it and try to manage what ever arises. But none of it is what you’d call ‘Fun’.
Some people just do not understand it all and some never will. I’ve tried to explain it all to others but, to be honest, I doubt many of them will ever grasp the reality of it all.
Merl from the Moderator Support Team
Unfortunately not NZ, but close, Australia
It can be isolating
If you ever feel the need for an ear, hit me up for a friendly chat
Although I basically understood this Merl, you just explained it in a way that is much more easy to understand thank you!
It’s so true, so many variables and some days I’m great and some days I’m terrible compared but can’t work out the difference… can never work out if it’s sleep, medication, heat, water, quasars in the sky lol… I guess we will never pin point exactly everything that can help/make worse as there’s too many variables…just do our best with what we know
Thanks for putting words (or an equation ) on that, I feel exactly the same. Not able to figure what variable or lever to adjust, even tried a daily journal for weeks to find out. But no. And difficult to understand for others.
Yes I am from the bay of plenty! Didn’t know if there would be any other kiwis on here or not
Hi Guys, yet another Kiwi here, This one’s from the Tararua region and is interesting to hear of others in NZ so we know we’re not the only one! Cheers
Not NZ but from Australia your big brothers lol please feel free to reach out here if you need a chat… God bless!
Thank you all so much for your responses! This definitely made us feel that we’re not alone in this journey!
I hope everyone here keeps a reasonably good health despite the many challenges you’re all facing.
You are all my heroes!
Is your AVM treated? We are in the Northland region.
My hubby went for his angriogram in September and I was really impressed by the neurointervention team in Auckland Hospital. Made us feel safe!
And that is a HUGE plus. My first neurosurgery turned out to be an emergency situation, so it all seemed to happen around me. The 2nd surgery was ‘planned’, well, as planned as these things can be, but I found the medicos to be a little blasé about it all. Me? I was an absolute mess because I knew what was coming. If I had one more nurse tell me to ‘just relax’ I would have screamed. Being comfortable with the team can make things so much easier.
Merl from Modsupport