I had my tongue reconstruction on October 25, 2011. My doctor removed 50% of my tongue and did the flap reconstruction where they removed the tumor and then just pulled one side of my tongue over and attached it to the other side. When you look at my tongue it looks normal but when I move it you can see that the "old tip" is now on the side.

Anyone else out there have this surgery and how are you coping with the nerve sensation coming back and adjusting to the new movement? I've found myself biting my tongue more lately even though it's been almost six months since surgery.

Hi there... did you have rads or chemo? I doesnt sound like you did... I had the exact same surgery but lost maybe a third of my tongue. (I also had rads and chemo) I do have sensation in it and it's a little swollen still from the radiation, but had they not cooked it I think it would be fine. I sometimes almost bite it but I feel a what's like a bee sting so I know what's up and catch myself before I really mangle it. I think your tongue may have been a bit swollen (especially if you had a neck dissection) and now that the swelling has resolved, and your lymph has built new pathways, its a bit bigger in terms of width since it's probably thinned out depth wise. they can revise the graft at some point. My surgeon who is quite awesome if he does say so himself (and rightly so I suppose) he has told me a few times he could revise it and my trache scar. When he said that to me last october, I wasn't in any hurry to let him back in my mouth. Plus my plastic surgeon, who worked with him during the surgery told me to wait as my tongue would still shrink, since radiation naturally thins things out... I was in total agreement. How is your speech?

Hi Robin

I had a CO2 Laser glossectomy last October 2011 and more recently a revision to fix significant adhesions that anchored the left side of my tongue to the floor of my mouth. I have numbness and nerve pain to the left lateral and tip of my tongue. Which I suspect is what you are describing as well.

My second surgery, the revision freed up the anchoring rather well, my tongue tip still deviates to the left but not as much as before. When you say "they just pulled one side of my tongue over and attached it to the other side." I wonder if you too developed adhesions that have anchored your tongue? Perhaps a revision may help to modify your tip? Have you discussed options with your surgeon?

How severe is your nerve sensation? I have nerve pain and it was very severe after my first surgery. I have since learned that nerve pain can take anywhere from 6-24 months to regenerate if at all.

I take T3's and gabapentin for the pain. My pain ranges anywhere from a 2/10 to a 8/10 still. If you are bothered by the sensation and if it is painful, you should seek counsel from the Pain Clinic at your local Cancer Centre. I am asking for a referral to the Pain Cinic at my Cancer Centre (on Monday) and hoping to get in by weeks end. The worst part of pain and medication is how tired I always am. Getting up at 04:30 for work doesnt help. LOL

PS I too bite my tongue too frequently!! I went to my dentist and had a few sharp bits of my teeth filed down to minimize the risk of injury. I have actually woken up having bitten myself.

Hope that helps. Best Wishes and I hope your sensation issues are faster to fix than mine.

PS Do you see a speech therapist? They can offer you exercises to help with tip positioning.