I saw the second specialist today - an ENT - who has referred me onto another specialist. sigh. Apparently he isn't the specialist in these sorts of tumours.
Nevertheless he was able to answer alot of questions. Essentially he seemed very optimistic. He said this is a good tumour to get in terms of it's position and it is fairly easy to get too. I had some scans done back in the year 2000 (gosh that feels like a lifetime ago) and he thinks he can actually see it then even though at the time they couldn't. That too is a good thing - it means it is slower growing than we thought.
He does think that my symptoms are caused by the tumour, which really is a relief. It means that I am not imagining it, or just overexaggerating small events. Of course he said this with a caveat that they never really know for sure but it does seem to make sense. He even said the fatigue was directly related as trying to manage balance issues makes you tired. That is such a weight off me as I have really struggled with fatigue. I keep thinking I am just lazy, or not coping with motherhood as I get tired so quickly. It is hard to describe, I can wake up with alot of energy (even after a crappy night) but as soon as we do an activity I am bone crushingly tired. But now it all makes sense. He has prescribed some tablets that I can take to see if they manage the headaches I've been having as well as the dizziness/nausea etc but I need to see if I can take them while breastfeeding.
His opinion was that I would need surgery - but whether that was in the next few months or the next few years was up to me. Although he seemed to think within the next 12 months would be a good move. But then he isn't the surgeon so I may get another opinion on that. Essentially he said it wasn't life threatening but that if my quality of life has been impacted (it has) then it needs to come out.
So the next step is to see a neurosurgeon which I will do just before Christmas. I am feeling really down tonight. I feel like when we got told we needed IVF. Something huge has just happened but on the outside I look normal. And yet nothing will ever be the same again. The specialist gave the impression that this was all fairly routine, and nothing to worry about, but of course I am worried. I need to reconcile the fact that something is growing in my head and making me sick, yet I can leave it there for a while and not do a thing about it. I feel like we should be having surgery NOW yet that isn't going to happen. Realistically I am considering next March/April when I know Mum and Dad can be here for me and I would have stopped breastfeeding.
In the meantime I need to pull myself out of this funk I'm in. Some lovely people have told me how strong I am but I don't feel it. I feel tired and dejected. I need to start planning Christmas and Charlotte's birthday, maybe that will take my mind off everything.