The One A Year Later

Today it will have been one year since I had my first operation, to put on halo #2. Wow.
FYI, I got my hearing back four days into traction 😅 - I can't even begin to describe what a relief it is to be able to hear with ease and have a normal conversation where I don't have to, basically, 'fake it till I make it'.

That's the biggest thing the halo gave back to me but it's actually only one of many. See, my soft palette is no longer resting against the back of my throat so my voice has lost its nasal tone, I can swallow easier, I no longer experience pain from the trapped nerve in my right arm and I can taste without having to swallow first.\
As a result I'm a lot more energetic because I don't have to constantly be on the alert, constantly anticipating, God forbid; conversation and interaction with other people (!!) 😏

Let's see, I kept a diary of sorts whilst I was in hospital and looking back, the day that I FINALLY popped my ears was April 27th 2014 #BIGDAY - I can remember it really clearly. I was (of course) lying in the bed, strung up to the frame when it happened. When I decided to 'give it a go' ...it was small and painless - just one tiny pop, similar to the sound a faulty radio makes when being turned on. I remember thinking later that something more should of happened, 'was that it? After months of being separated from everybody else THAT was the 'breakthrough'?!'

Anyway, I couldn't believe it. So I turned to my mum who was sitting next to the bed and asked her to say something to me. I think she said, 'what? What is it?', and upon hearing her voice, properly hearing her voice for the first time in six months, I promptly burst into tears.
Of course my mum freaked out. She told me later that she thought my hearing had completely vanished (it had already, moderately, improved - just a tiny bit) and through floods of tears I blubbed, 'no, no - it's back, it's finally back...I just *hic* popped my ears!!'
I think my mum actually screamed before bursting into tears herself. You see, the thing is I (we) had gone into this whole thing of halo #2 with no guarantee that anything would improve, so you can probably imagine the relief and pure, utter ecstasy we felt that it had all been worth it. That we had made the right call.
I remember, straight after I got it back we listened to the song that had sorta become our anthem, through all the tricky times - 'I won't give up' by Jason Mraz and then my mum played me 'happy' by Pharell Williams. Whenever I hear that song now, I am transported back to that small corner of Sky Ward, Great Ormond Street Hospital.

I spent six months in halo #2 (it went on April 23rd and came off on November 11th) as opposed to three months like halo #1 - they did everything differntly. They fixed the screws lower (6 vertebrae lower) down my spine and after three months would loosen the bars of the halo roughly a centimetre at a time so yeah, it took a looonngg time before they removed the actual brace. It was tough. The halo was slightly different from the time before in that the jacket was lined with sheepskin - fine in the winter but I had to wear it through all of summer. I celebrated my 17th birthday in halo #2 and actually braved school(!!!) - I was going into lower sixth and didn't want to miss out any more than I already had (i.e. pretty much my entire high school education). That was really hard. It wasn't until I broke out of the halo that I realised how self conscious I had felt. Everyone at my school is incredible - they treated me just like everyone else. I truly don't know how they did it, but I love them for it..💞

So yeah. Things are good at the moment. I've been told that the hearing in my right ear is now 'normal' (whatever 'normal' is - I'm a sociology and psychology student now 🙌🏼) and I literally moved into adult medical services just a few weeks ago - it's different but I can already see that prof. Drake is going to really help me.
Life is good *touchwood*.
Let's hope it stays that way...
😇

Ciao!
EH
xxx

The One That Was The Night Before

Well, I go into hospital tomorrow and am having surgery on Wednesday..!

I've had a great day today. Very, very tiring but really lovely :'). All my friends came round for pizza and ice-cream and my highly awesome-artistic friend Amy made me this gorgeous 'good luck' card with the sweetest, most inspiring message (she alerted me to the fact that we've now known each other for 14 YEARS!! :O). Another one of my friends, Claire, made a 'good luck, we'll be there for you' video-montage of all us gals which, upon seeing it later, made my mother cry!
I love my friends so much..they are my rock(s).
I probably shouldn't but I can't help but hope that next time we're all together, I'll be able to listen, to them talk, with ease and follow the conversation smoothly. Call me paranoid, negative or superstitious, but I can't help worry (and I know this is stupid) that thinking positively or hoping that the desired outcome (senses restored) will happen will mean it, well..won't.

The surgeons will put me on traction straight away, when I'm still in theatre. They're gonna take all the metal that was put in last time (halo round 1) out, so to avoid mega-life-threatening brain slippage, I'll be attached to the bed straight away (when I come round). I remember last time, the weights were only applied later on. I made a big ceremony of going to the loo for the 'last time'  (in a week). Ahh yes..the loo situation. More on that in a sec. Anyways, my parents told me that I'll be on the HDU (high dependency unit) for a few days so they can keep an eye on my flimsy, metal-less spine. This means, 24/7, screaming babies and blinding lights, It's my mum I really feel for. I plan to be doped up and outta it, for the best part of next week, but my mum won't have the peace and luxury of morphine and diazepam, like me.
Right..the loo. I am about to be subjected to regular humiliation, every day and night. I'll keep it short and..er, savoury. Cardboard potty. Doting mother. Attached to a bed. You get the picture. Next time you use the bathroom, thank your lucky stars that you don't have to do it hooked up to a hospital bed.
I'm not very religious, but every night I go to bed and I pray to god, that everything will work out. I don't know if I'll get a chance to supply an update before surgery. Hell, I don't know if I'll even be able to, once I'm in traction! So please wish me luck.

I'm so tired. Just so tired of feeling tired and all I can do is hope and pray that it will change...

EH
xo

The One With My 'Feelings'

My feelings...feelings. Hmmm. I'm terrified. So, so terrified. Not so much for the operation (although I am, of course), but for after. Maybe that's obvious. Maybe, because I'm expecting people to expect me to be afraid, only, of the actual procedure, they'll know why that isn't the scariest part for me. Hmm...yeah, I'm not too sure what I just wrote (I'm tired and just typing as I think). I just read it back and I, myself, have no clue. It doesn't even really matter. All that matters is how petrified I am. Sure, I'm petrified of the-actual-opp and all the things that could go wrong, because it IS really, rather 'mega' surgery (neck, spine..!), but I guess I haven't really sat down and properly thought about it. Even if, in medical terms, it's considered a success (as in no brain-damage or paralysis...oh shit, now I've started), to me it won't, REALLY, have worked if everything, that I'm praying gets fixed...doesn't.

Not even everything. I just want my hearing back.

But what I'm REALLY scared about is it not working. I can't really remember last time, when I was in traction (it seems I was pretty drugged up on diazepam). But apparently it took a few days before my hearing snapped back into place. *babble, babble* the point I'm trying to make is that I've been told (albeit, only by my mum - we have yet to get an actual informative appointment), that it could take longer for everything to settle down. *loooonng exhale*
Last time I had the halo they were looking to fix my basilar invagination. A symptom of my, very rare bone condition, and something that caused me to suffer from horrifying 'stroke-like' episodes amongst other issues. Well, they fixed it up very nicely (no 'episodes' since), but unfortunately left a serious of, whilst not potentially-life-threatening like before, nasty symptoms behind.
What I'm hoping is that; they fixed what they set out to fix last time, and had no way of foreseeing the awaiting reprucussions, so now that they are focusing on the present problems, they really should be able to fix them. That's what I'm basing my logic on, anyhoo. But, of course, all this opens up the worry; what's gonna go wrong this time? What new, unforeseeable problems will arise from this operation? What, what. What if, what if. It's all one big 'what if?'

Phew. I must go. I can't stay. I'm having bisphosphinate treatment at the moment and I'm SHATTERED (probably why none of the above makes much sense).gfxfykhkkhtraaadfvs..

Bye-bye,
EH
x

The One With The Conformation

Just a short one. So, when we got The Answer we were given a provisional surgery date for the 23rd of April. Last time I had the halo the pro.date was bull, and I ended up going in a week later, so I wasn't expecting to actually have surgery on the 23rd..but hey, what'd ya know? Booked in for the 23rd! I'm officially awaiting our "letter of conformation"...

When my dad told me I was like, 'woah it's happening' and he was like, 'yeah...only three weeks' and I was like, '!*>}_\^$|\](&-!'
We break up for Easter in like a week (revisionrevisionrevision :/ ), then I'm going with my parents to Majorca in a couple of weeks (wooo!) and then surgery in three.
I think it's good cos it's not to long that we get impatient (plus, hopefully it means it'll be off by the beginning of August and I'll be better for the start of term), but long enough that I can have some fun and do some things and see some friends before the opp. :)
Told you it was a shorty..;)

EH x

The One With The Answer...

..Yes! It is happening. I am now awaiting surgery! Aaannndd they say I should have surgery within just over a month! Wooo!

But eurgh...the night before the deciding meeting, I was a mess. I had absolutely no idea what I would do if they said no. I knew that, even if we got the go-ahead, it wouldn't (won't) necessarily work. In fact 40-50% says it wouldn't (won't)...but how could I handle knowing that there was the possibility of a solution out there, without being able to get at it?

I'll try, my best, to describe how I was feeling, the night of the 18th. Mainly terror and dread, at how I would feel if I got a no..because, if I'm honest, I couldn't really see why I'd get a no. The way I saw it, (and tried not to see it) was, 'the last time I had this operation, I was of way worse health then I am now. My organs all work and I don't react badly to anesthetic..why shouldn't I get my 'yes'?' On the other hand, things had never really gone 'according to plan' for me..what was to stop this from being any different? Because of all this, I didn't really want an answer, yet I couldn't wait any longer. I had to know but I was so so scared of what I'd find out..

Upon my mum's suggestion, I wrote a list of all the things I'd be able to do if surgery was a no-go, like; enjoy 'muck-up day' at school, have a summer holiday abroad and definitely start 6th form, in September, along with everyone else...
But none of this could ever compare with the benefits of 'halo round 2', if it worked. And I knew this.

But it's alright. I got the yes.

Now? I'm feeling pretty numb...and exhausted. I'm told its because of all the build up to 'the answer', and now that I no longer have to worry about it it's like, whoosh! My mother is stuffing and squirting me with vitamin C and echinacea because she's worried I'm gonna get ill, now that I'm less 'on guard'. *eye roll*
Much to my dismay, she has declared that, whilst I'm still allowed to stuff my face in preparation for the inevitable weight loss, that always follows surgery, she will be drawing up an exercise regime. We had an exercise bike installed recently and I've hardly touched it, so that's first thing to change.
She's already pouring lakes of water down my gullet, making me eat more fruit n' veg (I don't care..I like fruit) and dragging me on what-seem-to-me-endless walks (although now more bearable, since the sun reappeared). But I really don't mind. I'll do anything I can to increase the chances of a rapid and successful recovery, and I know this is the best way to ensure that.

So to sum up..mixed feelings at the moment. Really, an almost overbearing majority of relief and elation with just a (well, rather sizeable) slither of fear. It's all good.

Ciao for now,

EH x

The One With The Halo..round 2 (please?)

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

The One With The Halo (Finally!)

I'm officially in The Halo. DumdumDUM!

This sucks. (That's what the sticker says)

I've been home for roughly two weeks and in The Halo for about four...I dunno, I've kinda lost track of time.
I went into the hospital on the 11th of September and had my first op the next day. That first op was only about 20 - 30 mins and was to put the ring around my head (ie drill it into my skull (!))

I was then attached to the bed with a piece of string being pulled down by weights. This was to lift my skull off my neck. That was pretty tough as every time I had to go to the bathroom my mum had to slide a cardboard potty underneath me :{ (eek!)

The first night after surgery, I made things very hard for myself by projectile vomiting whilst flat on my back <:O not the easiest thing to do whilst aiming at a sick bowl...
However, after that things got better and as the week progressed I became used to it and enjoyed recieving visits from my family and friends.

My Aunt Clare (who we all call Aunt Minx) would bring in incredible brownies. I swear, before the brownies, I was living a highly healthy lifestyle on fruit and water only (this was mainly because the hospital food was atrocious. On my first night in hospital, not knowing any better, I ordered chicken nuggets and chips...now the chips weren't that bad but the nuggets? Eugghh! I have never tasted anything so repulsive.) Either way, after Minx descended these God blessed brownies on me, those are pretty much all I lived on.

Anyway, I continued to have lots of visitors from family etc., one being very memorable and from my Aunt Em and cousin Floss. I was feeling better than I had in days and when Floss and I were fiddling with my spankin' brand new iPad (more on that later), an alarm started blaring like a foghorn.
A flock of nurses came flooding in and Aunt Em emerged from the bathroom, pink in the face. It turned out that she had mistaken the emergency cord for the flush! I don't think I've ever laughed so hard in my life.

LOL.

One of the best days was recieving a iPad from my Uncle Pikey in France where he is working at the mo. As I ripped off the wrapping paper all I could see was a white box. I looked up to see what all the fuss was about and was greeted with manic smiles..I'd obviously missed the Apple logo on the sides. When I figured this out I pretty much started hyperventilating...it was a good day

Eventually the 19th rolled around, This was the big one. The one where the surgeons would be attaching my skull to my neck. Eek!
I don't really remember the whole going-down-to-theatre, so I can't really tell you to much about it. I very vaugley remember being wheeled down and then waking up in the High Dependency unit full of screaming babies.
When I woke up the next day, we were back in a private room and so pleased to be.
The next few days were pretty tough as, although I was no longer strapped to the bed, I had to get used to having a cage around my face and a jacket around my chest. Here, I'll show you...

Regina George in 'Mean Girls' rocks a Halo.

 So. That's my journey so far. Hey, I've still got a long way to go but I'm living one day at a time. How cheesy is that?!

Ciao!

EH xx