Tongue problems after surgery.

Hi Trooper1

I am sorry to hear the difficulties you are having with eating. We don’t realise how reliant we are on tongue movement to help with eating as well as teeth. Glad to hear that you have had dental restoration but having teeth does not necessarily make it easier with eating as I found when I had a surgical obturator after my first maxillectomy (it is like a dental plate with teeth attached to block the hole I had in the roof of my mouth at that stage). I experimented with lots of food but found a combination of dry mouth and inability to chew with the obturator meant that I could only manage mostly mashed food at that stage.

What have you been managing to eat up until now and do you take dietary supplements such as Fortisip, Ensure etc? How is your weight, are you able to maintain it?

I have not had an operation on my tongue but after 2 maxillectomies (now no longer able to wear the obturator) and a mandibulectomy am minus most of my teeth and gums so also am rather limited in what I can manage to eat. I manage on a pureed diet and Sustagen and am able to maintain my weight.

As the dietician suggests try and build on what you are already able to eat. Very soft foods such as poached eggs, avocado, mashed stewed fruit, mashed steamed veg might be a step up if you are already managing a pureed diet. It is a time for experimentation. You will then eventually find exactly what you can manage. A normal diet may not be an option in the long run but that doesn’t mean that you can’t enjoy eating the food you can manage. Don’t be disheartened.

Wishing you all the best.

Lyn

Hi trooper. I’ve sent you a friend request. I can put you in touch with Laura Marston who has had a total glossectomy and manages to eat. Maybe she can give you some tips. 

Hi, sorry to have taken a while to get back but yes I would appreciate the contact.

Chris

Chris I’ve sent you a private message. 

Hi , sorry to have taken a while to get back to you have had PC problems.. The situation is during surgery \I had a skin graft to the floor of my mouth and what was left of my tongue( 3/4) was stitched to the graft, unfortunately a bit tio tightly hence I cannot at present move food around my mouth, I only have teeth on the right hand side of my mouth wo the food needs to get there for chewing, this does not work. I was on purred, now on soft and bite sized along with Ensure plus and plus fibres. 2-3 bottles a day. 

Chris

As I am new to this if you send me private message where do \I get it in my email or some other place here.

Chris

Hi Chris. This is on my phone. If you tap the arrow at the top right of your page ( mine has a 3 next to it) you’ll get the private message icon which I’ve circled. Tap that and my message should be there 

Hi Chris

It seems to me you are doing really well eating soft and bite sized food which is a real step up from pureed with teeth only on one side of your mouth and a tongue that is very restricted in movement.

I only have teeth on the bottom left side of my mouth so they are useless in eating even though I have good movement of my tongue. A pureed diet is the only option for me. It is all a bit messy and I won’t eat in public because of this but have got to the stage where I can now feel comfortable drinking using a straw in public.

I am waiting on restorative surgery to give me back some teeth in my upper jaw but there is currently a lot of discussions from my medical team about how exactly they will do that. I am not holding my breath about the outcome and even if I do get some teeth back in my upper jaw I am not sure how successful it will be with eating.

However as I am now quite used to a pureed diet I won’t be too worried if that is how it will continue to be.

With time you will work out exactly what you can manage to eat although it may not be a roast dinner or a bacon sandwich but if it is that is even better.

Hope you get some useful tips from the contact that Dani has sent you.

Sending warm thoughts your way.

Lyn