Okay so previous visitors to this blog will know that i have a residual and active pituitary gland tumour in my head which has caused a growth hormone condition called acromegaly. The tumour and acromegaly are controlled through a 30mg injection of Sandostatin LAR every three weeks at The Christie in Manchester.
One of the side effects of my acromegaly has been the consistent growth of my lower jaw and in particular on one side of the joint which is at the condyle of the mandible. The clinicians say that i have a rare asymmetric cross bite and despite the chemical treatment i receive at The Christie this jaw growth has been cracking on for some time.
Alongside my treatment at The Christie, i have had braces and orthodontic treatment through Wrightington, Wigan and Leigh NHS Foundation Trust for about 4 four years now. The plan has always been to correct my jaw and bite problem via a surgical procedure called a bilateral osteotomy. However, the continued jaw growth has meant that the osteotomy operation had to be postponed. Instead a condylar shave had had to be carried out on one end of lower jaw to effectively remove 5-8mm around the condyle which should stop the growth. Stopping this growth should then facilitate the bilateral osteotomy. Fingers crossed.
Right so now we are up to date the condylar shave operation actually took place yesterday at Manchester Royal Infirmary which is part of Central Manchester University Hospitals NHS Foundation Trust.
Here are a couple of photographs from the day/days after:
The operation went really well and the care that i received was amazing. I often blog and post using the hashtag #lovetheNHS but the flavour of this post is more about my appreciation for the NHS and my care these last few days. Some take the NHS for granted which is extremely sad.
Anyway, if you are at all interested (and i know that i go on) here are more details about my condylar shave experience:
- The weekend of my surgery started with a last-minute drive up to Scotland. Why? Well Annie (my girlfriend) was poorly on Friday and quite simply i needed her this weekend even though i never admitted it lols. On sunday Annie was still poorly but after Church with her family there was a revelation…..Whilst in a cute little cafe having lunch Annie sprung it on me that she was travelling back with me on Sunday and was coming to hospital with me. This was such a boost and only made possible thanks to her mum so thanks M X
- Travelling back down from Scotland on sunday afternoon i had been thinking about Prof T from The Christie as i had been in there for my jabs on Friday and hadn’t seen him. Then weirdly calling in at my favourite motorway service station, Tebay, who should we bump into………only flipping Prof T the man himself with his lovely family. Call me soft but seeing Prof gave me and Annie a boost. Prof and his team at The Christie have been amazing and they are a big part of my life!
- So on monday morning Annie and I were up very early and had to be at hospital at 7am. We booked in at the Elective Treatment Centre and then i waited for my turn to be called. After about 20 minutes a lovely Staff Nurse called Andrea called my name out and i was assigned a temporary bed/bay where i would wait to be taken in to theatre. From the outset Andrea was amazing….she told me everything i needed to know, where i was on the list, had a giggle and made all the patients in my ward, who were waiting for operations, feel happy and cared for.
- I was 3rd on the list for surgery but i was soon advised that there were bed shortages which wasn’t a problem. After a while the Anaesthetist Dr ? came to see me and we had a fabulous chat about my condition, i informed her of a few things she didn’t know then we talked about my career change. This lovely female doctor helped loads and kept me really happy and calm. I feel quite bad that i didn’t get her name but i will try to find out.
- After her visit one of the surgeons came to see me Mr A. He again was lovely, gave me all the information, showed me where the incisions would be made on the side of my head and again kept me calm. Albeit these were serious conversations there was a level of personal attention that made me feel a bit special. Not long after this Staff nurse Andrea came back for a natter too. What a gem she is to the NHS.
- Ok so after an hour or two Mr C the senior surgeon came to say hi. Mr C is the lovely chap i have been seeing alongside my orthodontist Mr B at the Royal Edward Infirmary in Wigan. Mr C and Mr B have been working with me for a few years and have been exceptional……..this was set to continue! Mr C advised a few times of the bed issue and kept me informed. He was also charming with Annie.
- Just after lunch, when Annie had nipped home, i was called down for surgery. A super friendly and chatty porter called Pete walked me down to a state of the art theatre and we had a giggle along the corridors. Once in the pre-theatre room i was introduced to a new anaesthetist with a beard. Sadly i forgot his name after he gave me the drugs but he was charming. Before going to sleep, myself, this chap and the porter had really interesting chats about conservation, my career change and my rare condition. Honestly, i actually felt a part of the team lols
- So surgery lasted just over an hour i think but i’m told i was in the recovery room for about two hours as they needed to get my pain down from 8/10 to below a 5/10. During recovery i was under a really nice theatre recovery nurse called Jenny. I was pretty much out of it but she seemed to stay at my side for a long time telling me what was happening and giving me pain relief. After a while the pain came under control and another awesome porter came in and we had a giggle as i slobbered down my chin. Thanks again to Jenny and the porter. You helped me loads.
- So i left recovery i was sent up to ward 11 to be kept in. On arrival in the ward i remember falling into a doze (probably the morphine) then as the porter and Jenny handed me over i heard my mums voice then Annie too and i felt myself filling up. I don’t know why or what happened but i had been really worried about the operation and i was over the moon that they were there for me. We had some laughs a few cuddles then shortly after both surgeons appeared. They told me how the operation went and as i was coming super round fast Mr C joked about me going home. I jumped on this told them Annie was a nurse and asked to go home! It was nothing to do with my care but i felt like i was ok and that someone else could do with my bed.
- At about 8pm i was packed up and the girls got me home! The Staff Nurse Amina on the ward was also amazing and commented how max patients never go home the same day so i was clearly a tough cookie! I’ll take that. Think i was slightly out of it as i remember telling her that i run marathons about ten times hahahah
- Getting home I slept well through the night apart from Annie waking me every two hours to check and other than lots of swelling I am feeling really good. The pain is totally under control and all is good!
- The swelling has got quite a lot worse 18 hours after the operation but i was warned about this
- 18 hours in Annie made the most amazing soup that’s ever passed my lips! The girl got skills
- 36 hours post operation the swelling has started to reduce and i havent taken any codeine for 12 hours
- 48 hours post operation the swelling is further reduced and i have been able to start eating on the other side of my jaw. A full english breakfast minus any hard bits.
- Day 3 the swelling again is much reduced and i’m only taking paracetamol and ibuprofen. In the photos you can now start to see my ear above the swelling I have also just realised that on the dodgy side of jaw, my back teeth are meeting together. OMG this has not happened since years before diagnosis back in the days when i kept telling my silly dentist that my bite was changing! Feeling very happy.
- Day 3 i realised that i have limited sensation/feeling across the swollen areas of my jaw./head I was warned pre-op about the risk of nerve damage in this area and i’m hoping that this is temporary and relates to swelling. Basically, if i touch an area of swelling around my ear it feels really dull as if i’m not touching my own body. Finger crossed.
- Day 8 swelling is still going down nicely, the pain is reduced, my bite seems to be changing as the swelling reduces, i still don’t have normal touch sensation on/around the swelling but this is all fine and i’m a happy chappy! (Possibly more so after a few days with the girflfiend and she gave me my chrimbo presie >> a drone = awesomes)
- Day 12 recovery has gone really well so far and i have been totally off any medication for three days now. The swelling is much reduced, stitches are dissolving nicely, wound looks good, my bite has changed again as swelling reduces and albeit biting on one back tooth at the the moment (which is now feeling delicate) i can live with it short term, only have 40% sensation around the wound but i am eating normally and the jaw is starting to feel stronger.
Here is a video that shows my face/jaw twelve hours after the operation:
So that’s it…. the operation went well and my treatment as Manchester Royal Hospital was amazing. To Mr C and his entire team i want to say thanks….to Annie and my mum thank you too, you have both been amazing as ever! Annie in particular sacrificed lots to be here with me and for that i am indebted to you.
In terms of the surgery outcome, i am seeing Mr C and Mr B in three weeks and no doubt they will send me for another nuclear isotope scan to see if the jaw growth has been stopped. If and when this is confirmed will determine the next steps.
Thanks for reading. Dicky