Post op maxilectomy

Hi Joanie, I’m sitting here with my husband who is 18  months post op for his maxillectomy. He remembers well his 1st replacement and his wasn’t an ideal fit either and adjustments needed to be made. So I know easier said than done, but try and get back to your consultant or restorative dentist, explaining just how much you’re struggling. My husband is being prepared now for his metal obturator and for the last year he’s been pretty much ok and is able to eat/drink what he wants and his speech is good. He wants you to know it does get better and you will get more used to it. He sends you his very best wishes 

Hi Joanie

Hold in there as Annie’s husband said it does get better. This early part is the hardest. I remember trying to get my first obturator out the first time and I had a real struggle and couldn't move it either but after advice and help from my restorative dentist manged it well and then I popped it in and out with ease.

The first obturator never fits that well and drink etc coming out of your nose is an occupational hazard but once the fit is right this rarely happens.  Once the fit is corrected the rubbing in your mouth stops.

I remember thinking that maybe I should have gone with the graft option in the early days but once the first obturator was adjusted and the fit was better I was very happy with it. The second obturator which was made a few months later was wonderful. It fitted like a glove and was never uncomfortable.

Try to get an earlier appointment and tell your dentist where it is rubbing you and the issue with the seal and he will sort it out. It will take a few appointments but you will get there and once it is right you won’t look back.

Don’t be disheartened.

Lyn

xx

Hi Joanie

Sorry to read you are having difficulties after your recent maxillectomy. I found with my dental obturator water could still manage to escape through my nose. In my case it has been  hard to get a complete seal.  When drinking I just make sure I keep my head held slightly tilted back and give  it time to go down my throat and don't lean forward too quickly as I wrote before. It has become second nature for me and  I don't think about it.

You are only 6 weeks post surgery and healing  is probably still taking place and things like inflammation can cause pain and swelling.  It does take time to get used to things with having something new in your mouth but, I would give your restorative dentist a ring and ask for their advice on what to do till you are seen next Thursday because it is hurting you, or give your CNS a ring, but get some advice.   Your restorative dentist will be used to things not being quite right the first time and will assess things and make plans for adjustments

 Keep your nourishment and hydration up with things like fortisips, soups whatever your dietician has advised. As the others have said hold on because things do improve.

Best wishes 

Nicky

Thank you guys I was told its tough and will take a few visits for the obturator to fit but its so hard right now  my speech is terrible NOONE can understand me its sore. I can't eat (am craving toast of all things)  I am just being a moany miserable auld crow right now sorry.

But  I do sincerely thank you all for all saying this is normal and does get better I really appreciate it. I think I have been totally under prepared for how long and brutal this journey is and its hitting me now that for 6 months now my life has been hijacked by cancer and I am.looking at possibly another 6 to 12 months. Its not fair and I am feeling right sorry for myself thanks fir putting up with my miserable rant xxxx

Hi, sorry to hear this, can you also get some advice, if not already, from your speech therapist. Little things like tilting your head back when swallowing??may help. I really feel for you, its very unpleasant. I had an oronasal fistula prior to my reconstruction and i had to fish food, usually porridge or egg out of my hole :( 

get well soon

Elaine x

Hi Joanie rant away we’ve all had thise moments at one time or another. The girls have given you good advise. I looked at it like a marathon not a sprint. I never thought I would eat again with copious amounts of water. I can likewise I never thought my saliva woujd return to an acceptable level it did. Sadly it takes time but it’s worth the wait. 
feel  free to rant away. 
Hazel x

Hi Joanie

In relation to the speech issue. This is because the obturator is not fitting properly. Once the fit is corrected your speech will become normal again except when you have the obturator out.

Once with my first obturator the restorative dentist took too much off the back of the obturator as it was rubbing there. This affected my speech so I had terrible trouble saying some sounds. I went to visit my daughter in hospital and was trying to say ‘which room is Mrs. Dixon in?’ and it came out ‘Nixon instead of Dixon’. The pantomime I went through to try and say ‘D’ instead of ‘N’. I ended up having to write it down so I understand your frustration.

As soon as I got my new obturator my speech was fine but it was a bit frustrating along the way.

Your restorative dentist should be able to sort this out for you.

Sending you positive thoughts

Lyn

UPDATE

mouth piece is still stuck in my mouth I have figured out it us due to the metal hook on the tooth has bent so hopefully will be sorted tomorrow at the dental hospital.

My main update is went to see my surgeon today and he has booked me in for a radical neck dissection in the first week off October. Totally unexpected kinnda feel blindsided I honestly thought after 3 surgeries to remove the cancer I was done. Pathology came back that it was an aggressive firm off cancer and though he said he removed all the cancer visible (which is good ) he recommends removing all lymph nodes in the left side. Nit wanting to Dr Google and freak myself out anyone advise me on what's ahead? Pain, recovery, expectations ??? Anything? Am scared 

Hi, sorry to hear this but if you are already dealing with your mouth and obturator issues then i dont think youll think the neck dissection will be as bad. 
I had mine at the same time as my palate reconstruction and my neck at the time was fine. My mouth was the hardest thing to deal with as we use our mouths all the time. 
i do have some neck issues now, pain and limited movement BUT im sure it is the side effects of the radiotherapy. 
you come so far, yes its another upheaval for you but try not to be scared, you’ve dealt/dealing with the hardest bit (in my opinion). Good luck xx

PS Healing was good, scar not too bad, he did it in a natural fold in my neck. Once youre recovering remember to do the exercises thry give you and i was also advised to massage my neck regularly too 

Hi Joanie

Glad you found out what the issue is with the obturator. Once you can get it in and out easily things will start to improve.

That is a bit of a blow about needing another op so close to the first one. Pity they did not do the neck dissection at the same time as the op. but no point dwelling on that as they did what they thought was needed at the time.

With my mandiblectomy they did it at the same time on the right side of my neck.

However I had to have a neck dissection some years later on the left side of my neck which was a stand alone op.

Definitely a bit of a walk in the park compared to a maxillectomy no pain and a very quick recovery.

I was only in hospital a couple of days as there is a drainage tube from your neck for a couple of days. No problems having it taken out no pain.

The main side effects for me from the neck dissections were a change in sensation in my neck and on the lower half of my ear. This did improve over time with no issues with sensation with my ear now but sensation is still partly affected with my neck but you get used to that. Other issue very short term for me was being able to raise my arm above my head. I was given exercises to do for this and it came good fairly quickly.

Don’t be scared. The op you have already had was major but this one is small in comparison.

Thinking of you.

Lyn

xx