Long time, no see!

It feels like years ago since I was writing the last blog post and waiting to have the frame taken off and the jaw joints put in!

So much has changed over the last few months but I feel like the blog needs a final post (final for now…not forever!) to wrap everything up. I promise I will try to keep this as brief as possible as most of it is for my own memory!

I went down to London for the operation early on November 29th, to be in for 7am (our usual pre-op Nando’s trip was forgotten due to the fact I wasn’t really able to eat food!)

The operation was a total of 12 hours long and safe to say I was the only person on the list that day! The first few days passed as a bit of a blur and I woke up with a catheter in, 4 drains in my face to remove the blood, a morphine pump in my cannula and an accidentally perforated ear drum!

I do remember those days being pretty torturous and I didn’t eat anything for quite a few days, until I began starting to try supplement drinks and slowly more solid foods. Although I did have a constant supply of photos from mum, dad and Luke to see what delights they were eating from the hospital restaurant – they were a good distraction and a key memory I have from that period! fd9c3005-bb7e-44af-91ce-8acca4f7e4cf

The progress was then gradual from there on, but getting the drains and catheter out over the next few days made the world of difference!

 

Despite me being drowsy or crying a lot, in time I was actually awake, the nurses were lovely and as I built my strength back up, really encouraged me to try and eat in order to get home. The other thing stopping me from recovering at home was the morphine pump, but after several discussions with doctors and pain teams I was allowed to take morphine tablets home and use them instead.

On a more positive note, I will insert some pictures of me making snow flakes on the last day in hospital and I even got a free advent calendar! The pain was tough, but having gone through the pain with the frame, it was nowhere near as bad as I had expected, so that was very positive! I also had a Hilotherm cooling device when I was back home, which is an amazing device that brought down the swelling and also provided a good distraction (see photo!).

All was going well and we had been back for the post op appointment one week later, where they had no massive worries. So despite my rather grumpy mood, we were happy with progress!

Then a swelling appeared on my chin, the day before I was planning to go back to college for a lesson – typical! After a visit to the GP, we were sent to Addenbrookes A&E, who after very long wait, decided to admit me for 2 nights as they feared it was infection. They didn’t want to drain the swelling for risk of causing an open wound and possible further infection, so after 2 nights of seeing various max fax consultants and being stuck in a side room not allowed to leave (don’t even get me started, apparently all London hospitals had a superbug, so I had to be barrier nursed and tested for this bug – I was not a happy bunny!) we went back to GOSH to see my consultant.

She drained it there (another needle! – but I managed not to cry) and found it was only blood not infection – we were very relived!

We then made slow but steady progress, I started back at sixth form, work and have caught up on most of the missed work. I am in virtually no pain (whoppee!) and eating much more normally (just need to stretch the jaw to fit food in)!

For those wondering, I managed Christmas dinner (with mash instead of roast potatoes but still) and even had a cooked breakfast before my GOSH checkup last week!

We are still back there every 6-8 weeks for now but hopefully that should be more like 3-6 months very soon.

I think that’s pretty much it….with Christmas, birthdays, college work and general life I haven’t found time to update this until now, so apologies for that!

I hope everyone reading had a lovely Christmas and is enjoying 2019!

Mary x

Here we go again!

It’s been almost a month since the last post on here and now the next operation is nearly here! (ahhh!)
There has been a few challenges over the last couple of months whilst I have been wearing the frame (trying to get tight T-shirt’s over my head, the lack of pizza and trying to sleep with a metal frame on the side of your head!)
Turning the bolts was very definitely hard, and there were lots of times when the pain felt like it was getting worse rather than better and that the whole situation was a never ending process! You would come to dread the points in the day when you knew the bolt turning had to happen and then the half an hour you’d spend lying on the sofa in agony.
However after about a month of this turning the bolts we went back to GOSH for another checkup and were told it had worked really well and we wouldn’t have to turn anymore! YAY – it’s safe to say my grumpy attitude changed massively and the doctor then saw a much more happy version of Mary!! (See photos below for a before, start of wearing frame and last week – apparently it has moved forward quite a lot!)

From then on everything changed and I felt a lot more positive, able to go back to college full time and feel much more like myself! The Sixth Form team and friends I have made there have been amazing and so supportive, which means I have been able to completely catch up on all the work and exams I missed – just in time for the next lot! Soon wearing the frame became a normality and with the pain massively decreased, I learnt how best to sleep with it on and most importantly what are good/bad snacks to eat! We discovered the crisps ‘Skips’ are very good, as not only do they melt in your mouth (so they’re easy to eat) but they look like normal food! (Whoopeee!). I will also be very glad to stop having soup for lunch (despite investing in a fancy soup thermos to keep it hot for college – see photo!) and I am very much looking forward to starting to eat all the food on my list once I have recovered. Yes, I do have a list of (mainly crunchy) foods on my phone, that I fancy and can’t wait to be able to eat!

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The next operation is planned on the 29th of November (if all goes well – fingers crossed!) where they will take the frame off and insert the brand new, very shiny metal jaw joints! It will be a much longer operation than the first one but once it’s over I will be on the road to recovery straight away (not constantly turning the bolts and causing more pain like before!) and hopefully be without operations for a good number of years! Whilst I am looking forward to having the frame off, I’m not going to lie the prospect of another operation this soon is daunting but I know in the long run it will all be for the best!
We had a pre-op appointment last Wednesday where we signed all the forms, finalised everything and were told I had to wash with Hibiscrub for the next week to minimise bacteria for the op! How fun!
They have said its likely I will be in for 3-4 nights depending on how well I progress and that the operation itself should last the whole day but again that could vary!
I also feel like I couldn’t end this post without noting the HUGE amount of people who have told me over the past couple of months that they ‘like my earrings’ or asked me ‘where I got my earrings from?’ – something I have had to either smile at or explain that actually they aren’t earrings! One of the very best was a lady who asked me where I got ‘my Lego earrings’ from and when I explained, then proceeded to be very disappointed that she couldn’t buy her granddaughter ‘Lego earrings’ – bless her!
I probably won’t update again before the operation (as we will be getting up ridiculously early on the Thursday morning to be in London for 7!) so I will write with an update when I am out of hospital!
Love Mary x

Update!

This is just a little update for those wondering how the operation went, how the recovery is going (thank you to everyone for the lovely messages, cards and gifts) and what the plan is for the next stage.

On the morning of the 27th, we headed down to GOSH from the hotel and met mum (who had come in early that morning). We then began the waiting process.

On arrival I was weighed and we were taken down into our own cubicle where I was given a gown, stocking to stop blood clots (how gorgeous!) and emla cream to numb the area of the cannula.

After multiple discussions with nurses, consultants and anaesthetists to check I understood the process, everything was in order and the cannula was in (my least favourite part that required a lot of distraction – good job mum!) we could go down.

By this point it was around 1.30pm and after a short walk to the theatre, I successfully drifted off to sleep and woke 5 hours later in recovery. Still very sleepy and moving in and out of consciousness, the recovery section is a blur in my mind, but I am told we stayed there about 45mins before heading off to my room on Panther Ward.

Again from here the process blurs slightly, with the whole of Thursday evening and night consisting mainly of me in either painkiller induced sleep, upset about the amount of pain I was in or vomiting up the fluids they were pumping into me (how pleasant!).

I will insert some photos here, but I woke up with a bandage wrapped around my head and pins on either side of my face. I also had a pair of screws in the both upper and lower gums, which would later be used to band my jaw together.

By Friday I was slightly more awake but still struggling with keeping any food or water down and in a lot of pain. We later had a visit from my consultant/surgeon who removed the bandage and set about doing the first set of turns to the bolts (who said anything about time to recover, eh?). The turning is done using a ‘screwdriver’ and at the moment the aim is to do it at least four times a day.

On Saturday I was doing much better than before, but still hardly eating and barely able to move or talk. We had hoped to get me home that day but after I started vomiting again we decided it was all too much, so plans were set to get me home the next day.

Sunday morning came and Dad drove down in the car with my brother Luke to bring me home! I had kept down multiple supplement drinks and they were happy I would recover much faster in my own home than in the hospital environment. Whilst waiting for meds and forms to be signed, I even managed to walk to the play room where I watched Dad and Luke partake in a very aggressive and competitive game of table football!

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Once home, I was able to recover much faster and minus a few speed bumps (struggling to get any sleep without strong painkillers and vomiting again) and on the way to feeling much more like myself.

However, as we are still constantly turning the bolts, it’s always a struggle with pain as just when it starts to get better, you are most likely going to have to turn them again and that hurts – it hurts a lot.

On Wednesday the 3rd of October we returned to GOSH for a post-op checkup, taking the train down (with lots of questionable looks from passengers!) and then after our appointment, eating mashed up banana in the cafe!

A vague date has been set in late November for the second operation, where the prosthetic jaw joints will be fitted, which is very hopeful as it means I will only have to wear the frame up until then (we feared it could be much longer)! When we know more about the next operation I will update the blog again and also include some before and after pictures of turning the bolts.

As a side note, for those interested I would like to add the best blended dinner I have tried so far is roast dinner, with blended sausages and mashed potato coming in at close second! Just in case anyone may require this information!

I am hoping to slowly start getting back into college next week and am slowly starting to actually leave the house not in my PJ’s!

I am so grateful to all my family and friends who have supported me after this operation, whether that be with prayers, caring message, lovely gifts, listening to all my complaints/emotional moments (mainly mum and dad!) or supplying me with homemade milkshakes whenever they come and visit (thanks Georgia, love you!).

Hope you have enjoyed reading this and will keep it updated as we find out more,

Love Mary x

The next step!

It’s the night before stage one of the operations and I’m sat in a London hotel room, very full on Nando’s!

I realised I haven’t really discussed the plan for the upcoming ops and the processes that have led up to it, so here goes…

To begin with the plan was to have  jaw joint replacement surgery, replacing my jaw joints with custom made, shiny metal joints from America! These take up to 3 months to make so the whole process needed to be planned around that.

Initially it was thought that I could have the operations over the summer holidays, meaning I could go to sixth form completely normally, however due to debates between GOSH over which company to use in America and previous tests that needed to be done first, it has all been pushed back!

Before the 3 month process could begin to make the joints, I needed to sign A LOT of forms and also have metal patch testing (apparently America like to cover their back incase we sue them!)

The patch testing looked like this…

…and I had to wear the patches for 3 days, get them off and checked then go back in a further two days to be 100% sure I hadn’t reacted. This was a whole issue in itself (the NHS waiting list was enormous, I had to wear them during my further maths GCSE exam and I didn’t particularly enjoy not being able to shower!)

After this was over and we discovered (oh surprise,surprise) I wasn’t allergic to any serious metals, we could go back to GOSH and work out where we went from there.

On our next appointment with the specialist from Birmingham and my normal consultant, it was decided before I could have the jaw joints I would need another operation to insert a metal frame that we would regularly turn to increase the length of my soft tissue. This is called distraction, however unlike the frame I had on when I was younger (see previous post) this one will not stretch the bone, but the soft tissue instead.

That brings us to where we are today…after a couple more check ups to sign forms and pre-op anaesthetic appointments, I am ready to have the frame put on tomorrow. We are still quite unsure how long this first op will take (maybe around 5 hours), quite how long I will have to wear it for (around 2 months) and how long I will be in hospital (maybe only 2-3 nights?) as it has hardly ever been used to stretch the soft tissue before, especially in the UK.

Once it’s on we will then have regular appointments at GOSH to inform us on how often and how much to turn the ‘bolts’ and also to ensure it’s all progressing nicely We can then hopefully set a date for the main operation to go ahead!

I am now getting ready for tomorrow and moaning about how I can’t eat anything from 4am (meaning I miss out on the lovely hotel breakfast – how unfair!!)

I will update the blog after I’m back home and felling better and I have given Mum and Dad chief photographer positions to ensure I have some pictures to post!

Love Mary x

Where it all began…

Whilst waiting for news on operation dates and information, I thought I would add a new post about the condition, TMJ Ankylosis – at least then you might have a bit more of a clue what I’m going on about!

TMJ ankylosis is defined simply as the partial or complete inability to open your mouth due to fusion of the temporomandibular joint…(in other words a limited mouth opening and deformed growth as a result of fusion of the jaw joints).

I am going to write a bit about my experience with TMJ (or at least what the records say and what my parents tell me!) and the operations I have had to help improve it.

Being very unsettled after birth, I was seen by a paediatrician at Addenbrookes when I was 10 days old, who thought I had broken my rib whilst being born (now the thought is that it was an Infection that caused the TMJ).

Despite struggling to feed me, my parents were initially told that nothing was wrong with me and I simply had a small jaw.  I was eventually seen at Addenbrookes Hospital in October 2002 following a routine 8-month check up with the GP. Here I was diagnosed with TMJ ankylosis and Micronathia and after some discussions and scans, later went on to have an operation to free the jaw joint. Despite my younger self fighting the anaesthetic and waking up in the paediatric ICU, all went well and the operation was a success! I went from having 0mm of jaw opening to about 15mm!

For further treatment and more complicated procedures I was then transferred to Great Ormond Street hospital where on the 17th March 2005 I had Distraction Surgery to lengthen the jaw. This is where a surgical ‘lengthening’ device is inserted and bolts are turned on a regular basis to lengthen the jaw bone. See photos below!

We were given a ‘screwdriver’ and, with regular check-ups at GOSH, left to turn the bolts twice a day. We had a few hiccups along the way including swelling, nerve weakness and an unfortunate accident with the side of my head, a trip-trapp chair and a trip to A+E (in which I am informed I was very uncooperative!!) but just under 3 months later, I had the bolts removed and all had gone very well!

This lasted me well and despite some complications with lopsided growth my next surgery wasn’t until December 2010. However this was a pretty unsuccessful rib graft (bone taken from my rib and inserted into Jaw) – it was supposed to naturally grow the jaw length…but it didn’t and I had lots of sickness and infection concerns after the operation.

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A few months later I managed to fracture my Jaw whilst doing my jaw physio – This was something I grew used to, as it then happened another two times…one including a hockey stick and the other due to a smaller friend of mine who managed to jump upwards and hit my jaw whilst standing directly beneath me! (Safe to say she was very apologetic!). It turned out that the rib graft had grown backwards and lead to an aggressive growth developing on the right side of my Jaw, which needed invasive surgery to remove.

I have then gone on to have multiple Genioplasty’s (sliding jaw forward) to improve appearance, opening and air ways and also some more minor surgeries to remove teeth and deal with infections (for example, the time they managed to knock a bit of my brace off during surgery, which accidently fell into the wound site….we then later discovered said-brace when my face began to swell massively and was very painful!)

Overall, whilst it may appear a lot (or very little depending on your experiences in life!), I had lots of breaks in-between surgeries where I was able to live normal life without any disruptions or issues. Although if you ask Mum she will tell you I am supposed to do physio seven times a day (a minor disruption) – but I am currently lucky If I manage to remember to do it once! Oops! Here are some photos of the good times throughout the past couple of years…

The upcoming surgery should be a more permanent fix now that I’m old enough, and will hopefully mean I don’t need surgery for the next 20 years or so!

Hopefully this provided a bit of an insight into the condition and the operations I have had…and at the least it will mean my friends, who claim they ‘have learnt more about it from reading the last blog post than in the all the years we have been friends’, have more of an understanding!

Love Mary x

Introduction

Hi there! My names Mary Yates and I am a 16 year old girl, living with TMJ Ankylosis.

I was diagnosed at one year old and have been treated at Great Ormand Street Hospital since then. As a result of 8 both successful and un-successful operations, I now have limited mouth opening, a slight facial deformity and very irregular jaw joints – but am very lucky to live a relatively normal life, waiting to start sixth form next week!

I want to use this blog to document my upcoming operations (hopefully in the next few months…although it has already been pushed back multiple times!!) with the first one being to fit a metal frame, that will be gradually turned, to stretch the soft tissue. This will later allow replacement jaw joints, custom made in America, to be fitted on both sides of my jaw – meaning better appearance, opening and general function!

I hope this blog will be an interesting read to some people and maybe allow me to find others in similar positions.

Love, Mary x