Hey Jojo,
My name is Merl I’m a member of the Modsupport Team here on Ben’s Friends. I’m also a former Kiwi, now living in Oz. In fact, I lived in Kingsland and Mount Eden (not the prison
) for a while back in the '90s.
I must say your 16wk wait is not unusual. In some cases, a ‘Wait’n’watch’ approach is very common. For some people, they can have an annie their whole lives without knowing, for some their annie can be very slow forming. Some medicos are of the opinion that if it is not causing symptoms then it’s better to monitor than to be operating on the brain. From my personal experience they often ‘try’ to minimize the concern, but for us, the patient, it’s not quite that simple. As was said to me "We found something growing in your brain… ..Ohh but don’t worry…’
DON’T WORRY!?!?!? Too damn late, my stress went from 0 to 100 in a millisecond.
I don’t have an annie, but rather another little nasty growing in my head. I’d been telling the medicos something was wrong for many years, but it was all minimised as ‘growing pains’ in my teens, to a drug and alcohol issue and even a mental health issue. I soon learnt it was safer to shut up and say nothing.
Add 10yrs, I’m driving down the road and the lights went out, I couldn’t see. I pulled over, called my girlfriend. She took me to the hospital, they did a scan and came out with the line “Ohh, look what we found…” as if it was all something new. I’d been telling them for years something was amiss. I saw a neurologist who recommended ‘Wait’n’watch’ approach. I was less than happy with this idea. As I say, I’d had symptoms for years and they were getting worse, so the idea of waiting was like “Wait? For what? Wait for things to get worse?”. I made an appointment with a neurosurgeon and he recommended going in and getting it out. So, they operated.
The plan was go in get it out and life goes back to normal, only that didn’t happen. They found that the growth itself was growing a bit close to brain structures I need to survive. So, they reduced the size of the mass, in theory, reducing the impact on those surrounding structures, which is great… …in theory. But the reality was that the surgery unleashed a plethora of side effects. 3 months later it was decided that I needed further surgery and a shunt, a plastic tube, was inserted into my brain to manage the fluid build up.
Since then, I’ve been on a bit of a rollercoaster of symptoms and side effects. I’ve now required 6 neurosurgeries to try and deal with it all. Each surgery has been to manage a situation and each has managed, but each has left me with what I call ‘gifts’, oddball side effects and symptoms. None of which I would call ‘Fun’. I had a regular annual appointment with the surgeon early last year. I thought it would be an ‘All fine. See you next year’ type scenario, same as last year and the year before that, only it wasn’t and they wanted to operate yet again. To say I was reluctant would be an understatement, a massive understatement. I requested further scans be done and the surgeon came back with “Well, surgery might help…” MIGHT?? it might not help too though and considering the ‘gifts’ I was already managing I was not prepared to add to that list. I declined the surgery. I understand that eventually I will have no choice, but if the best they can say is it might help, I’ll wait.
None of this is easy, no matter what the medicos tell us. We know this because we live it too and who better to talk to than those of us with a lived experience, so come talk to us.
Merl from the Modsupport Team.