#maxillectomy

Well this is very strange... I have toothache. Im my false teeth... It is actually quite funny, and in a strange kind of way comforting as it feels normal! It isn't really causing that much of a problem. The stabbing pains, however, are. They have suddenly got worse. They are in my top lip, up the side of my nose, and in the corner of my eye... it is very difficult to explain - they effing hurt, but are very quick. I think it is the nerve trying to re-generate. My nose, half of my top lip, the actual lip and my gum were completely numb. Now I have my nose back (yay!) and half of half of my top lip... if that makes sense. My lip itself is completely numb. There is nothing there. I could have a red wine moustache and have no idea. But who cares!

Anyway. I think the nerve is doing it best to re-grow/re-attach/whatever it is trying to do. So do carry on...

The other thing is the mouth stretching. I am absolutely thrilled to now be able to stretch my mouth back to how it was in November, before the op! It has taken a while, a lot of excersises, and definitely the treatments from Ana, my Cranial Osteopath have helped. I still have to do some stretches each day but nothing like what I was doing before. Ana has a new site - if anyone needs to see an Osteopath/Cranial Osteopath, then I highly recommend her. Her knowledge, professionalism, and gentle nature make here a true healer. Go and see her!!

anamattososteopath.co.uk/

So I think where I am now is as close to how I was before. And do you know what? It really isn't that bad. I can talk, eat, sing, do whatever I like. Yes it is a bit different, but really, it is ok. It could be a lot worse.

Another really exciting thing that is going on, is the fact that my chum Will has set up a forum for all things maxillectomy and I am a moderator for him. The site is a place where people who have been through similar experiences can talk to each other, share advice, share their feelings and basically meet others and understand that noone is alone when going through something like this. It is just starting up but I feel really chuffed that I am going to be help someone else through their ordeal. The forum can be found here, so if you have found this site but want to talk more then drop by and sign up!

forum.maxillectomy.com/

I am off to see Mr K in a couple of weeks for another check up. Fingers crossed all is ok (I can't imagine why it wouldn't be) but I will pop another post up then. The Mother is just finishing off the Sunday lunch so must go...!

I am looking forward to Thursday. Thursday (hopefully) I am getting my new mouth!! I am still wearing the one that was screwed in during the surgery (it has since been unscrewed so I can take it in and out) but it doesn't fit very well. It is making my mouth sore, and well I'm over that one now. Having said that, I can't function without it so I'm still quite attached...!

Before Christmas, Dr D took more moulds of my mouth. As healing progresses the shape changes, teeth move a bit, and the obs don't fit after a while. I'm hoping it might have some teeth on it... not to chew with as there is no bone to support them, but to touch the bottom teeth on that side as they are probably wondering what the hell is going on. We will see though. Whatever is is, it will be the best New Years present ever...

I am also waiting for the jaw jack. I am still struggling with opening my mouth. The mornings are the worst. I have to spend a lot of time each morning stretching and opening so I can get some breakfast in. Then before every meal. The excersises are taking up most of the day and I can see some small improvements, but if I stop the muscles just shrink back to what they think are their relaxed position... which means a closed gob for me! Bad times.

So I am being ordered a Therabite (jaw jack) which is the safest and best way to help rehabilitate the jaw. It is tiring me out.. so the sooner the better!

I also saw Mr K before Christmas... he was very pleased with himself as the results of the pathology show he removed all of the rubbish that was in my jaw! He was so pleased with himself we could almost see him wagging his tail... We have started talking about reconstruction - how and when... it looks like it might be sooner than I expected, but we have more meetings planned to talk through so I am not thinking about it too much at the moment... Need to get over this one first!

It has been a very strange end of 2012. I hope noone has to go through anything like this as it is really not that nice. I couldn't have got through it without the love and support of my family and friends, and I can't thank you enough. You know who you are! I will never be the same again, but will hopefully be a new improved version...! 

Here is to 2013 and all the fun and happiness it will bring. 

When I started this site, it was partly because it was cathartic for me, but mainly because I couldn’t find anyone else who had gone through having a Maxillectomy. I needed to find others, so I didn’t feel so alone, I needed to find others because I wanted to know that I WOULD BE OK - I needed someone to tell me this, who wasn’t my family or doctors…

I wanted people to know that they are not alone, that others have gone through it before them and have come out the others side, well, functional and enjoying life again.​

So in came an email from Katy - someone who has a Keratocystic tumour, although benign, they are aggressive tumours that have to be treated in the same way as cancer, they need to be removed!

She has had one before, which was removed without radical surgery and sadly she has had a re-occurance. This time the Tumour is larger and will require a Maxillectomy.​

I’m saddened that Katy has found this site, but I am also pleased as I hope she knows that she isn’t alone in this.

She will be soon having an MRI to confirm the extent of her Tumour and then I guess will be booked in to have the surgery shortly afterwards. Katy seems a little more positive about this now and has got to the point where she knows this is something that has to be done, it is an unfortunate choice that has been taken away from her.​

Katy sounds strong to me, a very positive, independent woman who I think has a good sense of humour (see her blog below).

With her permission I will post updates about her here as her story progresses.​

One thing I did Katy, which I’m not suggesting you do but I can definitely recommend, is to totally stuff your face pre-op with lot’s of healthy, good quality foods, such as CHOCOLATE, CAKES, CHIPS, PIZZA etc… you get the idea… - got to get something out of it?!