This won’t be the best-written blog post in the world. Nor the most eloquent as you can imagine.

I think I am writing this mini journal as a way to help other people with TMJD surgery – including those with Ehlers-Danlos Syndrome.

A quick flashback. In October I woke up and yawned and my jaw locked – open. I have had joints lock before, including my jaw. But shut and clicks straight back more or less. This time I forced it to shut which was a bad plan. It hurt. Lots. And since then I have had pain, lots of random jaw positions to get used too and I could only open my mouth enough to fit my pinky finger in. Since October I have seen a number of ever more specialised oral medical professionals – from my regular dentist all the way to my TMJ maxillofacial surgeon.

Yesterday I had surgery for a dislocated temporomandibular joint and a misplaced disc (it was about 1cm away from where it should be on the MRI from December).

So, onto the narrative of yesterday’s events.

I arrived at the ward at 0745 as I was first on the list. When I arrived I answered the same questions quite a few times and met with the anaesthetist and my surgeon. Both of whom filled me with the confidence of a successful and streamlined procedure.

It came to pass while I was being visited that I was the first TMJD patient with Ehlers-Danlos Syndrome that has been in the care of this surgeon as both issues are rare and then together even rarer. I was asked if my procedure could be a learning one. I was more than happy to volunteer as tribute. It involved no extra effort from me. The students would be present to look on to the surgery and it would be videotaped and photos were taken. After the fact, my surgeon told me that he was going to write a paper about my case. #bringonthefame

I was then taken down to the ‘anaesthesiology parlour’ where I was given a cannula in my right hand (the fixed needle for giving IVs through). And set up with simple ECG monitors (to monitor heartbeats, oxygen saturation and blood pressure).

Then I was told that “I’m not fooling them – my heartbeat was giving me away” and I was given some oxygen and an injection that would put me in the mindset of ‘having had a glass of wine.’ I don’t know what wine they drink but my goodness it was a large one! Once I was in a post lots of wine state they said to me to try to keep my eyes open as long as possible and think nice thoughts. And with that, it all went dark.

Next thing I knew was waking up from possibly the best sleep I’ve had in years. As an insomniac all quality sleep is precious. I had a pen and a clipboard with paper to write on. My nurse stayed with me while I fought to put my poor hazy brain back together and she managed my pain with OxyContin and was generally wonderful and reassuring. I remember my arms and legs feeling like they weighed a metric tonne and the pen felt like I was Arthur raising Excalibur from the stone.

They had put me in my hospital bed so that I didn’t have to move after which was a joy. Oh, I should add here – we were being super careful because I had to relocate my hip that morning and it was still sore and generally not very stable.

Then the porter came and took me to my ward. A while passed on and I wasn’t very aware. I remember trying to stand up and it being a bad plan (my blood pressure wasn’t too stable yet) so I had my first experience of using a commode. Yeah, that’s where I will leave that experience.

Shortly after that I asked for some pain meds and was given some Oramorph (a liquid form of drinkable morphine). Then I lay and waited for my brain to keep piecing itself back together.

Soon, James arrived and he had brought a flask of soup and some of my favourite tea from home. He also went and rescued my things from my other ward – especially my glasses. Unfortunately, I was in and out of consciousness for a while (and I’m sure I remember him napping on the chair too) so I wasn’t the most entertaining companion.

Around 2 hours later I felt a bit more awake and needed the loo. I was determined to use the real loo so my nurse (who turned out to be about 5 foot and I’m 5’9″) “helped” me to the door of the loo. Success! Walking!

When I came back I wanted to change into my own PJs which made a world of difference. I was told I could speak if I felt up to it. So over the next few hours, I slowly built up my speaking with James. It was exhausting. But I was eventually no more uncomfortable talking that I was pre-op.

My surgeon came to visit and had a look at my jaw. He seemed very pleased with the outcome. He told me they got lots of good information and they learned a lot through my procedure too. The condition of my allowing it is that I get to see the images and final paper when it’s written – is that weird?

He said if I keep progressing the way I am I will be getting home soon. I am overjoyed at this and have been practising speaking and moving my new jaw.

James and I chatted a bit more and then my mum arrived. She stayed about an hour and I felt quite bright.

At 8 pm the visiting ended so I snuggled in and waiting for nighttime meds to come round before I sleep. They didn’t come until 12 midnight! Then I lay awake for a while. I don’t think I slept really – more dozing. My blood pressure readings were really love in the night but this morning it had improved a little.

At the moment the jaw itself is swollen and my bite is a little weak and odd feeling – but amazing considering. Day 2 – let’s do this!