I was just wondering what others' experiences with your flap have been. Since my surgery my tongue has a painful/sore throbbing and doing the exercises from the speech therapist really wears my tongue out. I expected it to feel somewhat sore, but not like this. Is this common? If so, then when did it subside for you? Does it just get better the stronger your tongue gets? I'm still having trouble sleeping as I feel so uncomfortable once I lay down to relax. I am able to eat solid foods again and swallowing isn't an issue, but I still have difficulties using my tongue to clean my mouth and control the food, so eating is painful also.

Im sorry to hear you are struggling with your recovery. Unfortunately this is completely normal. Many patients take months to adjust to their new tongue. With practice it will get easier. If your tongue needs to have further reconstruction surgery it will have to be after a full year has past. It can take that long to adjust and for the swelling to completely subside.

One pain medicine which I found very helpful was neurontin. This might help ease your pain as well, check with your doc.

Hang in there, In time it really will get better.

Thank you very much for your reply. It isn't too terribly bad - definitely better than the pain that I had with the cancer tumor itself. I just was expecting more soreness than pain. Glad to hear that is is completely normal and just a part of the process. I just wanted to check before I bother my doctor. I had my post-surgery follow up appointment about 2 weeks ago and they were all very happy with the flap and my progress. I just didn't realize I would still be in pain. I'll have to come up with some way to relax and sleep more. Thanks for the advice.

Hi Talim75, You mention pain with your tumor. My best friend has a 3cm tumor on his tongue. We have not started treatment yet, all the prelim stuff happening this week. Did you find anything that eased the pain of talking and eating prior to treatment?

Ask the doc for prescription pain meds and magic mouthwash.

Thanks, yes he set us up with magic mouthwash today.

Oh yeah, that magic mouthwash is wonderful! It really eases the discomfort. I used it for about two months or so, and went through almost 2 liters of it. I don't have pain or rawness anymore.

The dental team at the cancer center also recommended that I purchase a waterpik, use a baking soda and water based rinse, and they actually gave me a baby toothbrush with an ultra soft and small head. I found the toothbrush quite useful to hit some of the areas that were harder to reach, and was absolutely shocked to discover how much gunk I rinse out with the waterpik. I still use this now, as I find it somewhat difficult and uncomfortable to floss my teeth. Even months after my surgery and radiation, I still use the baking soda rinse after meals whenever I can.

Eating a greater variety of foods and moving beyond a mostly liquid diet took quite a while but it eventually improved for me. Clarity of speech also improved with time. Personally I still have some trouble with certain words, or especially when I have to spell something out - my D's sound like G's, so I have to resort to the old radio code (you know - Alpha, Bravo, Charlie, Whisky Tango Foxtrot, etc.) when people can't understand.

They put me on hydrocodone, but truthfully towards the end it offered only a slight relief from the pain.

Talim hopefully you are feeling a bit better. I know you've been through a big surgery but the flap shouldn't hurt, neither should your tongue really (post op yes. but this far out - almost 3 months - no). I get that it might be tired but usually by week 8 you should not be experiencing actual pain. Muscle strain yes (my tongue gets tired too, by the end of the night if I've talked alot I get a bit lispy and achy but nothing painful). SO I am going to go against the grain and say have them check it again and maybe ask for a scan. hugs and take care.

Late to the thread here, and I certainly hope you are better by now, but I wanted to add that hydrocodone sort of 'wears off' if you use it too often. It's a component of my migraine medication, and I'm lucky that I only need it once or twice a month ... and even then, I can tell it works differently now than the first few times I took it. I know folks with worse migraines who get nothing from it. So ... not sure about tongue pain, since I was on stronger stuff post-op and then didn't need it as long as you have, but it might be that the med just isn't helping you correctly, either.

Update - The pain has subsided a good bit, but I am still experiencing a lot of nerve damage. I still have pre-cancerous cells in my tongue (they were tunneling in my nerves so the doctor couldn't get everything) and thinking back there was a good bit of nerve damage prior to my surgery as well. I didn't catch it as early as I had thought (it spread so fast!!). As a result, only the very left edge of my tongue feels normal, over a 1/3rd is the flap, and the remaining part has constant nerve tingling and radiating sensations in it. I'm progressing with my speech therapy and I have started as an adjunct professor teaching 3 classes, which will be good for my speech as well.

Sleeping is still an issue. The nerves in my left forearm where they took the flap tissue from are getting better, but I have good and bad weeks. The same goes for the swelling/drainage from my neck dissection. We took a vacation to Miami for New Year's (to celebrate my being 3 months cancer-free & my husband 4 years) and I felt so much better in the warm weather - there were times I totally forgot about my scars and the cancer (despite being in short sleeves). So I am looking forward to the summertime as not only will my healing be further along, but the warmer weather will help me as well. I've found that sleeping with my neck wrapped helps me a lot so I now try and keep my neck as warm as possible. All in all I know I got away easy and am doing my best to stay healthy to keep the cancer away, or at least be at my best possible if it does come back. Thanks for all your support!