Total maxillectomy

Hi Hunter10 

welcome 

Some of Lyn’ profile here might help

https://community.macmillan.org.uk/members/sophie66

Hi thanks for that. Sophie66 seems to have been through a very similar experience to me including our ages and length of time!! Unfortunately my consultant thinks I won’t be able to have that implant into side of face because of all the radiotherapy I’ve had. However by using a special drinking cup with long spout I can drink successfully without fluid coming out of nose nor dribbling. My face is also sunken in and my top lip was pulled in during surgery. I’ve been told my speech is very good considering I’ve lost all my hard palate. I was unable to have a flap because of length of surgery and fear my heart may not cope. 
Thank you

I’m so so sorry you have had such a journey. Lyn has had a few operations to correct her appearance. One I have seen made a stunning change for the better. She lives in OZ so is likely only just awake but I’m sure she will be along soon. 

Good evening Hunter10, i have had 3 cancer ops with radio and chemo my last one was in 2010 when i had my voicebox removed. I did not have a maxillectomy as mine was all to do with my lower jaw bone which i had reconstructed from skin grafts and bone grafts from my lower leg, i never recovered my swallowing and use a PEG for my food supplements but i can swallow thin liquids like water, tea, coffee, etc. Your procedure is more complicated than mine but i know what you have gone through so well done in persevering with it all. Thankfully for me, everything has now settled down and i have adjusted to my new way of life, im sure you will be the same once everything is sorted out, wishing you all the best for your continued recovery, take care.

                                                                                 Chris 

Thank you. I’m quite happy with my situation and not being able to eat doesn’t bother me . It’s just the problem with speech and people not understanding me when I can’t wear my obturator. I also have a new problem with sudden loss of hearing in my right ear which they think might be due to all the surgery and radiotherapy. I’m hoping a hearing aid might help this.

Hi Hunter10

So sorry to hear of your predicament and yes 'snap' I have had exactly the same ops over time and 2 lots of radiotherapy plus a mandibulectomy in 2013. No longer have an upper jaw and was unable to have a reconstruction because of a high chance of failure. I have all the same issues around a top lip that is virtually non existent and that sunken in look until I had the op to put 4 implants into my cheekbones that  a titanium bracket attaches to and the dentures attach to that. Apparently I was the first person in Australia to have this particular op. That did improve my look by 90%  which is great, although the teeth don't help with eating as the chewing motion is not there anymore.You are the first person I have come across that has the same issues so dare I say it is so nice to meet you although not in the best circumstances. Not many people fully understand the challenges.

I did have an obturator after my first maxillectomy but nothing left for it to hang onto after my second one. Sorry to hear that you can't have a graft to the roof of your mouth as it does make all the difference.

I can only eat puree, soups and fortisip. I do have some dribbling out of the side of my mouth which does cause a bit of an issue but I have learnt to live with it. My oralmaxiofacial surgeon says he can give me a lip graft but I am siting on the fence about that one as I am tired of ops and this one doesn't sound inviting. I do understand about the difficulty with speech as when I did not have my obturator in I had the same issue. I had to rush to put it in if the phone went as it was difficult to understand me. Also used to have the issue with fluid coming out of my nose sometimes. However that does not happen now with the skin graft to the roof of my mouth.

I do not eat and hardly ever drink when I go out as it causes such a hassle so fill up before I go or sometimes take my own food and drink with me. I still get out to all the celebrations and in fact have my birthday in a couple of weeks and have arranged to go out to a hotel for a meal with the family. I won't be eating but I do enjoy looking at the food and talking to everyone about what they are eating and generally enjoying the company. It has just become a different way of life but not a bad one. I have had some lovely holidays but go self catering so I can organise my own food.

I also had loss of hearing after my first maxillectomy but it was a build up of fluid and the surgeon put in a grommet and the fluid drained over time and my hearing returned. Is yours more complicated than this?

I do hope that your prosthodontist can organise a workable obturator for you as that would make such a difference.

I am happy to chat more if my experience can be of any help to you.

Sending you my very best wishes.

Lyn

It was lovely to hear from you. I can’t believe how similar our experiences are. My first op was 2013 - removal of 3 upper teeth and gum then 2016 same op but on the other side of my mouth. 3 months later I had to have a major op because it had metastasised to a lymph node in neck and grew out of node into surrounding tissue so I had a radical neck dissection with a fixed flap made by removing my right breast and flipping it up into my neck . They also removed a bit of my chin. Unfortunately surgeon wasn’t most skilled and caused damage to nerves in face and shoulder.

However I came through and like you being a very positive person got on well until return of cancer during pandemic upper left side . The op was delayed by nearly two months due to all the theatres being full of covid patients!! So the cancer went into the bone and hence a left maxillectomy. I still had 2 teeth on right hand side which could hold an obturator in. This allowed me to have a soft diet. 

This year my cancer returned around the 2 remaining teeth. My surgeon who is really good and supportive did a maxillectomy on the right. He was up for doing a long op using a flap to cover the whole area but my echocardiogram showed I’d had a silent heart attack in past some time so anaesthetist not happy. I therefore had the shorter op. 

I now have a large hole in roof of mouth where my hard palate was. I’m ok with that and do several flushings a day to wash out any food fortisip or mucus stuck up there. I can also drink successfully with my spouted cup( bought online) so take majority of soup kefir fortisips this way. My present obturator is held in by suction and soft plastic ridges that push up between the turbinate. This allows me to eat a small amount of sloppy food . Unfortunately it is not fitting well now as my mouth is healing and changing shape so am starting process of having a new one made. 
My consultant told me about having implants into my cheek bones possibly in future if the bone is strong enough.

so you can see why I’m delighted to hear from you. 
Yes it would be nice to keep in touch

Elaine

ps my birthday is also end October when I’m 72

Hi Elaine

You have been through the mill and it's great that you are so positive about things. It's funny but after my first op also in 2013 and then having more cancer in 2019 by the time the third op came around in 2022 I just put my head down and got on with it. I had gone through all the emotions involved by then so it was not nearly so hard to adjust to. It has taken a while but I have adjusted to my new normal and am enjoying my life as I don't want to miss out on anything. It's so great having a second and then third chance at life so I am not taking anything for granted.

I do hope that you can get your new obturator sorted soon as it will make life so much easier for you. I remember my first obturator after the first maxillectomy did not fit so well but the second one made after all the swelling had gone down was great and fitted like a glove and made such a difference. I can highly recommend the implants if you get a chance to have them as the denture fits so well onto the bracket.

Happy birthday. Isn't it funny that both our birthdays are in October. I will be 71. I had a bit of a shindig for my 70'th as I was so happy to make 70 so thought it was well worth celebrating.

I was wondering if you would accept a friendship request so we can chat more in private.So much more that I would like to compare notes with you about.

Best wishes

Lyn