Double Jaw Surgery: days 1-7

***Just before I begin, I should let you know this is a pretty detailed and lengthy post. If you want to find out my journey day by day then read on. If you're simply looking for a list of tips and advice on what to stock up on, then read my post "Double Jaw Surgery: essential buys and top tips" ;) ***

When you have been waiting a really long time for something and it finally comes around, it can be a strange feeling. That's how it was when surgery date finally rolled around.

The weeks running up to my #surgery were some of the busiest of my entire professional life, and in fact I undertook my biggest ever project to date the week prior to my operation. My first major Event Manager role, I was in charge of organising performers, glitter artists, makeup artists, hiring out set and decorating the space, as well as helping run the show on the day. It was an incredible experience but severely stressful, and I remember thinking "this surgery can't come quickly enough so I can have some damn time off!"

And I truly believed that. I really thought that surgery was going to be 'time off'.

How naive.

Anyway, I worked all the way up to the surgery date, but tried to take it easy the last couple of days to relax myself and prepare me for a successful operation and a smooth #recovery. At my pre-op we had spoken about my weight and how if possible I should try to put on a kilo or two as I would lose weight after the surgery due to the #liquiddiet (I weighed only 45 kilos / 7 st 1). So in the weeks running up to surgery I was literally eating all the pies. Sounds glorious but it can make you feel a bit ill trying to put on weight, especially since a vegan diet is naturally quite healthy, so I really had to go out my way to try and get extra fat and calories in.

Tip: If you are a slimmer person, I would say it is a good idea to try and put a bit of weight on since the first few days after surgery you have little or no appetite, and probably #nausea/sickness. Plus you're on that dreaded liquid diet, which doesn't nourish you like a normal diet does.

We knew that I wouldn't be able to eat normal hospital food so we made some #vegan soup and a vegan shake in advance to take with us to the hospital. If you have any special dietary requirements, I strongly suggest you bring your own, especially if you're #NHS. The catering is limited and you don't want to be stuck unable to eat anything on offer! Like I said in the previous entry, I had discussed my vegan diet with the nurse at pre-op, but this information wasn't communicated through. Insist that they put it in the fridge when you first arrive though - ours was left out the fridge for over 9 hours so in the end we had to throw it away as we weren't certain it was safe (luckily we live a 10 minute cycle away from the hospital, so my boyfriend was able to cycle home and whip up some more that evening).

The Wednesday night I was terrified of being mega-hungry again on the day of the op, so following the hospital's advice of not eating after 2am, I had a high calorie enormous flapjack at 1am before trying to sleep. My efforts were futile since I'm usually a bad sleeper with any kind of major event coming up, and funnily enough the prospect of having both of your jaws broken isn't exactly sleep-inducing. Sadly we had to get up still exhausted at 5:30am the next day, but I was glad to still be full (ish) of flapjack at least. Final cup of water at 6am, and then I knew I wasn't allowed to touch another drop.

As I already pointed out in my first blog entry, my treatment plan was via the NHS so we had to arrive at the hospital at 7:15am along with every other bugger having elective surgery, even though we didn't know what time surgery would be. Hoping that it might be a first-come-first served business we arrived at 6:45. But unluckily for us it definitely wasn't first-come-first-served, and we weren't even in the first 20 people to be called through to the other room to get prepped for surgery. We were left in a normal hospital waiting room until around 11am (I was spread over 2 chairs sleeping by this point). We finally went through but didn't have a bed - just two chairs.

Based on last time's experience with #anaesthesia, I knew already of my fear, so I had brought my boyfriend with me for this event. I also planned lots of things to keep me entertained and upbeat as I didn't want any more panic attacks. I downloaded all my favourite music to listen to offline, and downloaded lots of comedy onto my iPad so I could keep things lighthearted until the last second.

We were repeatedly visited to go through stupid amounts of paperwork with the same questions (it makes sense: after all you do NOT want to be given the wrong #operation by mistake!), and then were repeatedly told that I would be going through soon, only for this to not be the case at all. At 1pm they assured me that I was next and got me all wound up and ready to go. Then no-one came to see us for over an hour. I guess someone else's surgery had complications and took longer than expected. At around 2:45 we were told it would be just 5 more minutes, but it wasn't until around 3:45 that they actually finally came to get me for the anaesthesia. This isn't a sympathy plea - waiting isn't the worst thing that has ever happened to anyone - but I just want to warn those going NHS that you could be in for a LOT of waiting and not-knowing.

Before the panic: ready and looking like ever the showgirl in my hospital gown. Who could have known these things could look so glam? ;)

Despite watching endless comedy and listening at full blast to the songs that make me happiest ('How Will I Know' by Witney Houston, 'Don't You Want Me' by The Human League and 'Wuthering Heights' by Kate Bush if you must know), when they came to collect me finally I fell into a hole of #panic.

Again, uncontrollable crying and #hyperventilating.

No sooner had they managed to say something that made me smile, I would be off crying in panic again! For whatever reason I have a strong (not-so-irrational) fear of the whole thing, that no amount of comedy or upbeat music could remedy.

Instead of making me count down from 10 as the anaesthetic went in like last time, I was given something to calm me down first which essentially meant I didn't know when the anaesthesia went in, and have no recollection of losing consciousness. However again I am sure I dreamed during the op - it sure as hell felt like a lot of time had passed.

THE IMMEDIATE AFTERMATH

I have little memory of waking up from the surgery, which took much longer than expected: around 4/5 hours in the end. The first few hours were a haze as I drifted in and out of consciousness.

I've been told that the nurses weren't quick to help when my boyfriend tried to get me a drink of water - a #syringe was needed for me to be able to ingest the stuff after major surgery involving my mouth and it took them 30 minutes to locate one. He claims they would have left me there all night without water if he hadn't kept insisting, but I wasn't awake enough to know. Drinking through a syringe after #jawsurgery is extremely difficult. It's almost impossible not to breathe some of it in, so it's uncomfortable and a bit scary. If you can get yourself a syringe with a tube attached rather than the normal spout, I think this is probably better - we just had a normal one and I swallowed a lot of air and coughed an awful lot.

Covered in dried blood, but looking surprisingly chipper. This was a mere hour or two after surgery

Next thing I remember is being woken up to have my blood pressure and temperature taken, and the ice changed on my bandages. They also administered more drugs via the #cannula. I vomited a lot of blood which was scary as hell as it's never happened to me before and felt so nauseous I was crying out in anguish and disturbing the whole ward in the middle of the night. Vomiting blood is very common as you swallow a lot of blood during surgery, so it's nothing to worry about but is unpleasant as hell. Apart from extreme nausea for the first 24 hours, I wasn't really in much pain because of whatever medication was being pumped into my veins.

I slept terribly, not just because the nurses wake you up every hour or so to check you're not dead (or take your blood pressure and temperature, same thing), but because the nausea was so bad and because you can't breathe as clearly. I was very lucky to not be wired or even banded shut at this stage, so I had free movement of my mouth, which many others don't have. This decision seems to vary a lot according to the surgeon. I just hope that it was the right decision because I am not certain my jaws have ended up in the perfect position...

I was supposed to be put on the Head and Neck ward after surgery, but there were no beds (typical NHS), so I was taken back to the Day Care ward. Normally there is nothing wrong with this ward, but I don't feel like the nurses were at all informed about what exactly I had had done and how I ought to be cared for. A lack of beds is a common NHS issue, so be prepared for this to potentially happen. Luckily they did know to keep me upright at night to sleep - a friend of mine who had the same procedure had an inexperienced nurse looking after him who put his bed down flat each night to sleep, which is really bad for bleeding and for swelling. Make sure you're kept at a 45 degree angle while you sleep.

DAY ONE POST OP

I woke at 5am and was unable to sleep again. I was devastated to recall that visiting hours weren't until 2pm. When you feel uncomfortable and have nothing to do, time crawls slower than you could ever imagine. My pain was low at this stage from a combination of having an almost entirely #numb face, and having #morphine and lord knows what else pumped straight into my bloodstream, but I felt to poorly to 'do' anything like watch TV, so I just slept when I could, and stared blankly when I couldn't.

I had to go to the toilet around 8am, and one thing I wasn't prepared for was how dizzy and horrible it makes you feel to be up on your feet, and how your muscles don't remember how to pee. General anaesthesia relaxes all muscles including those used to urinate, and trouble going to the toilet affects around 70% of all patients to some degree. Add to the mix the fact that #narcotics can affect your ability to relax your bladder, and it's total mayhem down below. It took me around 5 minutes to be able to get the pee out, and this trouble continued for around 72 hours after surgery.

I managed to get down some very small portions of the liquid food we had prepared, and either thanks to the constant drugs, or because of the extreme numbness across my face, I wasn't feeling much pain - around a 4/5 on a scale of 1-10. As the effects of anaesthesia wore off, I appeared to be in quite good spirits by early evening, so it was decided that I could go home despite them having said that morning that I would need to be kept in another night.

At home we had prepared a day bed in the lounge. I live with my boyfriend but was scared to share a bed with him immediately after surgery for obvious reasons. I also knew I would probably wake up a lot and need things like #medication, water, liquid food etc over the course of the night, so it seemed sensible to have a separate space for me to sleep. We had a bunch of cushions, normal pillows, and also a v-shaped pillow and a neck pillow so that I could prop myself upright all day and night, and keep my head supported.

That first night we watched David Attenborough til we fell asleep.

DAYS TWO TO FOUR

The #swelling starts. I knew that swelling would continue to get worse up until around day 3/4, but nothing could have prepared me for how that actually FEELS. Everyone's skin is different, and I am one of those people who has completely non-flexible skin so I don't know if this contributed, but it is horribly uncomfortable. After drifting in and our of sleep constantly in the hospital, I found myself unable to sleep at home. The first night I only had around 2 hours of broken sleep, and gave up sleeping completely at 5am.

Upon leaving the hospital, they had only supplied me with paracetamol and ibuprofen and instructed me to take 2 of each alternating every 2 hours (so for example parcetamol at 8am, ibuprofen at 10am, paracetamol at 12...)

The pain was getting higher by the minute and it dawned on me that the reason I hadn't felt much pain in hospital was because they were filling me with drugs via the cannula. I had to take the maximum dosage of everything they gave me, and became very distressed at the amount of discomfort I was in. Those first couple of days as my face became bigger I got less and less rest, and the days became the longest and most torturous I have ever endured. You are so uncomfortable that you can't even focus on things like watching TV, and my mouth had developed terrible blisters from where they had kept my mouth stretched wide open during the surgery.

Because of the extensive numbness, I didn't actually feel pain from these awful blisters except when cleaning my teeth, which is excruciating and scary at the beginning. You have fresh wounds everywhere that you worry about tearing, and you hurt opening your mouth too, so putting elastics on made me cry.

The swelling makes you incredibly hot, so I wore ice pretty much 24/7 for the first 4 days, wrapped onto my head in bandages and frozen rubber gloves as I had seen them do at hospital. It wasn't until a few days later when we braved a trip to Boots to find an alternative that we discovered that it's better to buy a big long support bandage (the tubular type) and put the iced gloves inside that, and then tie it round your face - much less fiddly than bandages, which came off all the time.

As a general rule, most people's swelling reaches its peak on day 3/4, although this can vary. It may also not go down for a couple of days after it reaches its peak, however its unusual to not see a reduction by day 7.

My big face

There were quite a few things I wasn't really prepared for that I would like to share with you.

1. #Insomnia. Now this turns out to be quite common - I just hadn't done my research. The pain, coupled with the fact that you have to try and sleep propped up at 45 degrees and on your back (I'm a stomach sleeper) doesn't help with getting rest. Additionally, when I lay back and tried to relax or sleep, I had this strange heavy feeling in my chest and the sensation that my respiratory muscles had forgotten how to breathe. This was really really scary. It basically felt like I had lost the ability to breathe automatically, so when I tried to drop off to sleep I wouldn't remember to/be able to breathe enough, and this made me suddenly feel like I was drowning/falling down a hole while spinning - which as you can imagine jolted me awake.

On the third day after surgery, I hadn't slept more than 2 hours both nights due to the pain and this breathing thing, and it all culminated in me fainting early on Sunday morning on my Mum's bed. The swelling was so bad that it felt like my face was turning inside out and I was in such incredible discomfort that I was in a state of panic. We decided to go to A&E as it seemed like something was wrong. Luckily they were very kind when they saw the state of me and took me to a private room with a trolley in so I could lay down, rather than waiting in the normal A&E waiting room. They promised to get someone from the #MaxFax department to check me over, but we had to wait a very long time to be seen.

The breathing thing was dismissed by the doctor as basically not existing, which was so frustrating as it was genuinely stopping me sleeping, and was scaring me to death. Everything else was said to be looking normal, which was reassuring and distressing at the same time, as I knew that technically there was nothing to worry about, but that also there wasn't really anything they could do apart from prescribing me stronger pain killers, which they did - codeine. This is revolting stuff, I found out. I quickly stopped using it - narcotics are nasty.

2. #Nausea. Either the pain itself, or the drugs they give you, or the fact that you swallow a whole load of blood and whatnot (or all three!), makes you very very nauseous. This is a nightmare when you're on a liquid diet, and I forgot how debilitating nausea is. Be prepared for feeling sick constantly, and if possible, request medicine that prevents sickness to take home with you. I ended up getting prescribed some when I went BACK to A&E days later with the same bloody breathing problem that was still scaring me to death and still stopping me sleeping. She thought that rather than feeling dizzy from not breathing enough, instead I had dizziness from my ear canals being blocked, and gave me anti-sickness pills, so they do exist.

3. Eating woes. Many many people are wired/banded tightly shut after surgery and I was lucky enough to not be one of those people. Nevertheless eating is not a pretty affair, and I had to use a syringe. Now online I had seen pictures/videos of people eating with syringes, but they had a rubber tube attached. The syringe I was given in hospital had no such tube. It is alarming and difficult to squirt liquid into your mouth and down your throat without getting it in your wind pipe, and can be made all the more difficult by the fact that the nozzle is hard plastic instead of soft tubing and blocks easily. If you can, get one in advance to save you the hassle I had, and it was even a hassle getting our hands on one of these ones (welcome to the NHS guys!)

Some people are advised to only have water and clear broth for a certain amount of time but I was given no such advice, so I pretty much got onto soups and shakes the first day after surgery. Eating is distressing and tiring, but the more you eat, the faster you gain your #strength back. The drugs will make you not only nauseous but lose your appetite - but if you can stomach it, EAT ANYWAY. Try eating lots of really small amounts at first while your stomach gets back to normal size. You had to fast on the day of your op already and healing takes a lot of energy so get that food down you as soon as you can! I won't delve into recipes here because I would like to do a whole separate blog post about my liquid vegan diet and how to get all the nutrients you need, but add as much fat to soups and shakes as you can, as well as fibre.

4. #Constipation. Weirdly, a liquid diet can give you constipation. As counter-intuitive as this sounds, I wasn't really getting the necessary fibre to keep things moving. Add to this the fact that the general anaesthesia stops your muscles remembering how to go to the toilet and you can become very uncomfortable indeed. I didn't have a bowel movement for 5 days, which made me panic that everything had become completely blocked. In said panic, I took a whole bunch of medicine for constipation - probably too much.

Having already had so little sleep it was very distressing to therefore spend the night on the toilet with diarrhoea and vomiting. Not only was it uncomfortable as hell, and caused dehydration which is a big no-no after surgery, but all the force from vomiting sent blood to my head for most of the night, and so even though that day the swelling in my face had started to go down, the following day (day 5 post-op) it got even worse again and ACTUALLY reached its peak. Not nice at all, and not welcome when you thought you were finally starting to improve.

So my advice is this: 2 days prior to surgery, take lactulose or something similar to draw water into the bowel so you don't get clogged up. After surgery make sure you have prune juice already stocked up at home to ensure you get your fibre to help keep things moving along nicely. And then let nature take its course.

Don't take constipation medicine as it's probable that you are hardly unable to eat a thing for the first day or two anyway, which would of course make you need the toilet less. You don't want to end up vomiting like me, and cause your swelling to get worse.

5. Bad taste/smell. This was totally unexpected. If you search for it you will find information online but not everyone experiences this. For me it was a strong sensation of a cross between a smell and a taste, and it was absolutely sickening. Also, when it hit, it caused strong waves of nausea that knocked me sideways. Some people seem to attribute it to having bad breath, however I didn't have my jaw wired shut or even banded tightly at first and I was really really good about my oral hygiene so I'm pretty sure mine was nothing to do with an ACTUAL bad smell.

From what I can tell, it's to do with the taste of blood and maybe even detection of the metal in your mouth and close to your sinuses, although I can't really find definitive answers online. The taste/smell for me was an icky rotten/metallic taste. Although not a normal tangy metallic taste but completely horrendous 'off' taste. And when it hit it was accompanied by the urge to be sick. I don't think there is anything you can actually do about it, but I just thought I would mention it as I didn't know it was going to happen. FYI I'm writing this on day 15 post-op and this has almost disappeared already.

6. Numbness. I was prepared for some level of numbness of course - it's not like I did no research! However I didn't expect it to be so extensive. Firstly, in my face I woke up with numbness in diagonal directions: the left side of my lower lip, chin and jaw are numb, as are the right side of my top lip, continuing onto my right cheek all the way up to my eye socket (I know!), plus the lower half of my nose.

In addition to this full numbness, I also have what I would call semi-numbness on the rest of my lips and chin: it's not full normal sensation but I can definitely feel it when I touch it, whereas I often bite the properly numb bits of my lip without knowing and cause damage to the skin. So pretty extensive numbness all in all.

Am I worried about the feeling not returning? Hell yes, I am worried. It normally takes around 8-12 weeks for feeling to return, and sometimes it can take up to 12-18 months, but in some cases it is permanent. I just PRAY that I am lucky and the feeling comes back...

In addition to the normal numbness, I also am experiencing some more general numbness across my whole body, and particularly in my bottom. I haven't mentioned this to the surgeon or orthodontist yet as I've had so many other concerns to pose to the surgeon/orthodontist during recovery that this didn't quite make the list. I intend to mention it next week for my 3 week checkup, and hope this is also temporary.

It's like if I touch any part of my body, I mainly feel the sensation in my hands, whereas before surgery it used to be closer to 50% hands, 50% body part. The bum numbness may be due to bed rest - I try to keep as active as possible, but nevertheless you have to sit on your bumcheeks both when you sit up and when you lay down as well because you are supposed to stay propped up at a 45 degree angle, so there is pressure on the butt cheeks all the time.

A tip for numbness but also just IN GENERAL is to keep moving when you can. I know it's tempting to stay in bed the whole time when you feel like crap, but as soon as you are able to it is a good idea to start taking gentle 5 minute walks round the block, or doing some very very gentle stretches (without tilting the head too much of course). I swear this played a huge part in not only my swelling improving, but my general well-being. It gets the circulation going, which is great for the numb butt, but also for generally helping your body get back to normal. I went on my first walk around the block on day 2 post-op, and as long as I felt well enough I increased my walking time slightly each day to rebuild strength, although I did have days where I felt weaker.

7. Throat/chest pain. This is probably due to the tube they insert to help you breathe but it really is very sore. I don't know whether mine was particularly damaged but it felt as though I had quite a serious injury in my lower throat and this may have had something to do with the #breathing issues I encountered. My throat/chest pain lasted over a week and in fact is still slightly sore now 2 weeks on. You may also find #bruising spreads to this area as the days go on. I also found that I lost my voice for a few days and it was uncomfortable to try and talk - you will note this if you watch the videos from the early days.

8. Sinus changes/runny nose. This wasn't such a big deal but moving my top jaw forward opened up room in my #sinuses. This has pros and cons, the pro mainly being that I can pretty much always breathe easily now even when my nose feels like it is stuffy! So hooray, there are good points! The main con is that my nose ran CONSTANTLY for the first 7 days. I mean constantly. Everywhere I went I had to go with tissue up my nose, including when I went for walks in public. I was so swollen that I had given up on my appearance entirely but I looked this ridiculous nearly all of the time and also had to sleep like this at night:

DAYS FIVE TO SEVEN

If I thought days 2-4 were bad I had another thing coming because days 5 & 6 were the worst days in my entire recovery. After the vomiting/diarrhoea episode from taking constipation medicine the night before, my swelling increased to be it's worst on day 5 - despite having started to go down the previous day. I hadn't slept more than 2 hours a night for 3 nights in a row and I was exhausted, which was making the healing slow down, and also made me more emotional and the pain more unbearable. I'd stopped taking pain meds that morning as I thought they were making me sick - specifically #codeine - but stopping all meds was a mistake as I was in for a world of pain. My Mum had left the day before as I thought my condition was improving, and my boyfriend had to go back to work that day, so I was on my own.

After dealing with the terrifying drowning sensation all night preventing me from sleeping, I took myself back to A&E that morning in utter panic, but they were not pleased to see me at all. After waiting 2 hours, I was told that the doctor was refusing to see me because I had an appointment with the surgeon later that day. Of course I was aware of this but didn't know that they would be able to address my breathing problem. I was also out of my mind with panic which was intensified due to the lack of sleep (crazy what no sleep can do to you).

So I had to return home and wait for the appointment later that day. When I went in, I kept crying as everything had just got on top of me - swelling at its worst, pain getting worse, exhaustion, breathing problems - the list went on. They dismissed everything as me just being #anxious which was infuriating, but on the way out I had a #panicattack (again - see a pattern here?) and so they finally sat me down properly and went through my worries with me on a more 'human' level. They also prescribed me sleeping tablets, but with me being unable to breathe when laying down I was too scared to take them.

I had to call my Mum and ask her to journey back up North as I wasn't coping, especially as my boyfriend was back in work all week. I hated asking her to do such a thing as trains to Manchester are so expensive, but it was the best decision I have ever made. Day 6 I woke up in agony. The pain was so bad I didn't even cry, I just went all silent. The pain was like a crushing sensation that went from the top of my head, all the way down through my brain, eyes, nose and jaws and down my neck and shoulders. I would say an 8/10 and I couldn't even think straight.

Nothing gave me relief, not painkillers or anything, and I couldn't even watch TV as I was so distracted. My Mum is really into #holistic therapies and so on her way up she called on a friend of hers to deliver a skype session of something called #EFT (Emotional Freedom Technique). I was sceptical but willing to try anything at this stage. After just one hour of 'tapping' with the assistance of my Mum, since I wasn't really able to talk, my pain had gone from a solid 8 to around a 5.5, and I felt generally comforted and more comfortable. It even relaxed me enough to sleep for a full hour straight after, which I was over the moon about.

Unfortunately that night I had intense nausea and some vomiting out of nowhere. Extremely unpleasant, but after a difficult night, I woke up on day 7 with pain levels at a 6, and once I had medication in my system, it went down to a 5, which was so much more manageable. My swelling had also improved a lot, so general discomfort was down, and NO NAUSEA! It was the first day I felt almost human, despite the pain and discomfort, and I used a couple of #5HTPs to help me through the day. These are heaven sent little pills for anyone going through a tough time - pure #serotonin (happy hormones!) that just lifts you up and gives you a little boost.

So, that is a pretty detailed account of the first week of my recovery, and while it does seem negative, I wish that I had been prepared for just how bad it was going to be. It's hands down the worst thing I have ever been through in my entire life, and the most extreme pain and discomfort I have ever endured. But I promise the next update is much more positive! It took me ages to get writing about my experience so I'm pretty late to the game, and that means I already know what happens next ;)

Here's a link to the little videos/photos I took along the way for days 1-7:

https://www.youtube.com/watch?v=2QZbmv-beGI

Find out what happened during days 8-14 and beyond in my next posts, and thanks for reading - I really hope it helped!

Claire x