Hi All,
I have a question for all of you that have had tongue reconstruction. I had slightly over half of my tongue recontructed (they removed the tip, left side, and part of my BOT), and I feel like my biggest problem with my speech is due to the fact that I can no longer stick my tongue out past the top of my teeth. As a result, my tongue has difficulty finding the roof of my mouth to make certain sounds unless I talk through my teeth, which I find I tend to do now. Does anyone else have this problem? If so, do you know of any surgery (or anything else) that can be done to help this? My speech therapist said I should physically grab my tongue with my fingers and pull on it to stretch it, but it is very hard for me to get a grip on it, and if I do it is painful and it makes me nervous I will cause some damage do it. I went to my plastic surgeon a few weeks ago and he said there is no type of surgery he can do to help it, as it will just create more scar tissue. Still, I wanted to see if anyone else has had this issue and if there is anything that can be done.

Thanks!
Emily

Hi Emily, I did not have tongue surgery but have trismus and other mouth issues. I cant stick my tongue out either. I also do not have any teeth. Somehow I have managed to retain very good articulation even with my limited range of motion in my tongue.

The idea of pulling on your tongue doesnt sound like a very good one to me. Be very cautious if you attempt that maneuver! You have gone thru major surgery and also radiation so you dont want to create far bigger problems by hurting yourself. When doctors do an oral cancer screening they will use a piece of gauze to hold a patients tongue so it doesnt slip out of their hands.

Im sure someone who has had surgery on their tongue will chime in soon. Glad to see you are working with a speech therapist, they really can do wonders!

Emily, I have had the same surgery, with the same outcome. I have tried to have a surgery where they "untether" my tongue from the floor of my mouth. I think it made my speech worse. I wish I had not had that final surgery. I wouldn't make any decisions for at least a year. My speech continues to improve a little all the time and I am out about 2.5 years. Some days I have more dificulty than others. Usually if I do alot of talking my tongue gets tired and lazy. So I just shut up and listen more. I know its frustrating, belive me, as I am in customer support for my job. But as I read these forums and other people's story's, I know that I am lucky that a little speech difficulty and some scars are my only lasting effects. Since your surgery was so recent, try to be patient your speech will improve alot especially over the next year.

Thanks Wendy and Christine! Wendy, that is exactly what I needed to hear. I was curious if I should try and have an additional surgery to un-tether my tongue, but I think I will take your advice and just back off of it for a while. I, too, feel so lucky and blessed that for now my speech is one of my biggest problems. I have begun to just accept that it will never be perfect, and my anxiety about talking in front of new clients, ordering food at restaurants, talking on the phone, etc is slowly getting better. It is very encouraging to know that your speech has continued to improve over the years. Just curious - why did you have 3 separate surgeries for a T1 tumor?

Hi there - I too have had very similar surgery - pulling your tongue gently may help stretch the muscles actually - not to the point of extreme pain. But if you're healed it should just loosen up the skin - which is designed to stretch (muscles too) - I'm am supremely blessed... My dr did not tether my tongue - they removed what sounds to be the same amount as you and same location, though no BOT - I have amazing mobility... I'm not bragging... The point I'm trying to make is my surgeon, folded the skin over like a tongue then built a new floor for that runs to my molars (gum area) but it looks and has the mobility of a regular tongue. It was all made from one flap from my wrist. So despite what your plastics guy said... I would get a second opinion from a top plastics guy used to this surgery and ask about a revision - but I would definately wait a bit - a few years - and then tackle it if nothing else works. I do do exercises daily... Sticking tongue out etc... Hugs.

Cheryl, did the mobility improve gradually for you, or was it there from the beginning? I can't really tell if the tethering is the problem; my surgeon did the surgery the same as yours. He said it might have teathered a bit from the radiation, but it is hard to tell. I think the reason I can't stick out of tongue is because the muscles in the base of my tongue were compromised from the surgery. I might try and get a second opinion eventually, but I know my plastics guy is supposed to be one of the best, so I am not sure where I could get a better opinion. We will see though, thanks for the advice! I will continue to stretch and exercise it and hope for the best

Wow. And I think I have it rough. I can't really share any helpful info other than I had almost a third of my tongue removed and could speak fine after surgery but now after radiation I can speak but it's distorted and for some reason my voice is deeper. I perfer not to speak at all when I can. The top of my tongue is raw.
Hang in there. U can honestly say slowly but surely things get better. They really do. I think we forget the progress we make and I for one get do caught up in the problem I'm experiencing at the moment I forget where I wS

The first 2 surgery's they didn't get clear margines. I was probably more a T2 after they finally got the clear margines, due to the size of the cancerous area. My doctor never changed the official diagnosis so neither did I. I wonder if the reason you can't stick your tongue out, is make they took tissue from the tip of your tongue. I think they did some of mine. Just a thought.

Hi there for me it's been a gradual thing - part of the big problem for me was the swelling as well. the lymphatic massage I had helped with that (swelling restricts movement) the lack of muscles in part of your BOT could effect it but my dr told me that I should speak fine - which I do, my tongue might be tired at the end of the day so I might have a lisp since the old tongue is responsible for lifting the new tongue and making it work - also true - so if your tongue is tethered then imagine your poor half tongue trying to lift a tethered (possibly) swollen other half... Hence speech issues. As your old tongue gains strength it should improve, but I would maybe ask your plastics guy to remove the tethered areas. Or revise them if the intent wasn't for it to be that way to begin with. Someone else here also had issues with tethering this usually happens when a open area grows onto another open area - its a natural healing process... Usually if it's un blemished skin they've used and it's attached open end to open end I'm thinking tethering should not occur. Another someone here had them remove the tethers and is doing much better. (I remember a post about it) so I think it may and should help, but do see how much improvement you get over time first. Also swelling restricts speech as well, the exercises will help strengthen your tongue, decrease swelling (gets the circulating going) and prevent it from becoming atrophied - I talk a lot... therefore I get my exercise naturally too.