A LOT has happened since I last posted something! Too much to share (...I reckon the computer would explode otherwise), but here's the recent latest..
I never ever EVER thought I'd say this but we have asked that I have the halo again. I know...*kaboom!*.
Recently I've been really down with everything that was affected negatively after the halo came off and my soft palette fell against the back of my throat (...don't ask. I don't really know.).
It's why it takes me, like, an hour to eat a bowl of soup, why my voice is heavily congested and why I can barely hear anymore. I've struggled with my hearing for years now, but when the halo was on everything magically got better, (I didn't even have to wear a hearing aid..something I cannot live without now) but then, when the halo came off, all of the above complications occurred, and my hearing deteriorated once more.
In the last few months it has become so catastrophically, unbearably, unimaginably awful. Before 'halo round 2' even became an option, we looked into a bone conductor hearing aid called the BAHAR. But it didn't/hasn't worked. Nothing wrong with the aid...just something wrong with me (of course). I should be used to disappointments and let downs by now but really, it has only heaped more hope and pressure on the 'halo round 2'.
Getting to the point, we spoke to the doctor who did my surgery and asked if there was anything that could be done, and he said (I quote) that it was "technically possible". Apparently he's done it before, on other people, but we have to remember that everyone's different and there's a chance that it won't work, or that it might even make me worse. He said that there is a 50-60% chance of surgery being successful and I've been telling myself that, at least that's over half...right?
I'm sorry..you don't even know what 'it' is yet. Well, they'd put the halo back on. I'd have traction for a week and then I'd wear the brace vis a vis metalwork, for another three months. Yeah...
Last Thursday, I had a bunch of tests all day long, (up at Great Ormond Street by 8.45am-4:00pm...phew!), called 'the pathway'. Basically to see if I'm fit enough to go through the surgery again. I'm talking; meeting with an anesthetist; having MRI scans (bleugh), physio, blood tests, lung function tests and soo much more (it was a looong day). If they deem me fit enough, I should find out around the 19th of March, (gulp) whether I can have the surgery. The good thing about all this is that if I do get a 'yes', I'd HAVE to have surgery within three months prior to 'the pathway', else it wouldn't count...so we wouldn't have the torture of stop/starts, yes/nos and maybe/maybe nots, like last time.
You might think I'm slightly delusional, wanting to go through it all over again, but it's the only option I can see that will improve my life.
If I have it, and it works, I'll finally become independent. I'll be able to travel, go to university, hell, even have a simple, easy, group conversation that doesn't require lip reading, and feeling on edge and embarrassed. The way I see it..fuck..my life will finally BE a life!
My mum, dad etc. say that even if it doesn't happen now, there is always a "few years later." But I can't wait a few years. My life is soon about (or at least meant) to kick off and I don't know what I'll do if this doesn't happen for me. I won't be able to do the things I want to...travelling, meeting new people, even, simply, going out alone. Everything, (and I'm not exaggerating when I say this) my life as I know it, is resting on this.
My friends are incredible. So supportive and understanding and I am so lucky to have them, but I am terrified of being left behind, because I know, no matter how hard we'd try, and they would try, it's inevitable that they'd move on without me. Why wouldn't they?
I love my parents and my sister more then I could possibly say, again, I am so so lucky to have them for family but it makes me want to scream, when I imagine, having to rely on them the rest of their
lives. It's not fair on anyone..especially them.
I am scared shitless for Thursday and the possibility that I might get a 'no'...I really don't know what I'll do. Here's hoping...wish me luck!
EH x
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