Hi all,

I'm about 4 weeks post-surgery. I had a 2cm tumor removed from the bottom right side of my tongue. The top of my tongue was not removed. Currently, on the top right side of my tongue, it's still numb; when I touch something to it, there's no sensation of feeling the touch.

My surgeon says healing will take a while, and that I shouldn't worry, but I was wondering if there's any wisdom you all have to share about how long it usually takes for sensation of touch to return to the tongue post-surgery. After 4 weeks, should I expect I'm as healed as I'm gonna get? Or is it typical for the sensation to continue to improve for months after surgery?

(I'm kind of scared to ask that question, but I also want to know what I'm dealing with here. I can tell I'm going to have to do some mourning about this if I'm unlikely to have sensation on the right side of my tongue for the rest of my life.)

Also, I currently find it's very uncomfortable to have foods that are very warm or very cold. Like ice cream is pretty uncomfortable. I understand that's typical at this point. A speech therapist said that having foods slightly cooler than what's comfortable can "wake up" the nerves, help them return. Really? Is that something others have heard or experienced? The therapist seemed a little quirky, so I didn't have a ton of confidence in what she was saying...can anyone here validate what she said? Is that common wisdom or baloney?

Appreciatively,

Rahel

Hi Rahel,
the tip of my tongue is numb too (I'm also 4 weeks post surgery). Just saw my doc today and he gave a vague "anywhere from 2 months to 6 months" for nerves to come back but that my tongue may never be the same again ( i think that last part was more in response to it's general fuction rather than the nerves).
He sort of implied I was a little impatient - 4 weeks is a really short time

Thanks, Monica. 2-6 months sounds much better than freaking out now.

:^) Rahel

At one stage when I asked for an idea how long something was going to take I got �how long's a piece of string"! A bit cruel but all through the healing process it is rare for someone to give you an exact answer. For one thing every one is different and heals differently. Also if you were given a time that was not correct the surgeons and doctors know this could get thrown right back at them and you would also be very disappointed. Any time I enquired I was always given an offhand response. Thing is sometimes it was many days when something came good and I did not even notice exactly when that happened..like the shoulder where I could not lift my arm above my head to wash my hair. One day I realised it had been OK for the last 4 showers

I had my surgery 10/8. The whole left side of my tongue was numb. I kept accidentally chewing on it when eating! Over the past several weeks sensation has returned-- it was just a gradual thing and there is some tingling there still, but at least I have stopped chewing it up! Don't know about the hot/cold thing, though.

Rahel

In terms of recovery, I suggest you quit thinking in terms of weeks. Months are somewhat better. It's only been one month for you and that's is too early to realistically expect feeling to return. A lot of recovery is psychological and you can make yourself totally miserable by counting in days or weeks.
Think about it, one month just seems shorter than 30 days or 4 weeks.
Feeling uncomfortable with hot or oold foods is very common also the first few months. I'm not familiar with the theory that nerves fall asleep and need to be woken up again. I did hear from my SLPs that it's easier to swallow colder things.
Even with extensive surgery, my formerly totally numb tongue has regained feeling although not as fast as I wanted. So long winded answer but bottom line answer to your question is YES, it's typical for sensation to improve not months after surgery.
Charm

Rahel,

Its been 7months since my surgery and my tongue is still a numb where the surgery was! I did have radiation and chemo though. I still cant eat very cold or hot things. So all is normal for you at the moment . Like Charm says, think in months not weeks, dont be too impatient (although that was my problem as well and my husband kept telling me the same thing). It will get better, just takes longer than we want it to.

Minh

Rahel, I don't mean to disappoint you but I wish I could give you a more definitive answer on the tongue issue. It's surely a vexing problem!

My surgery in March 2009 also left me with the left side of my tongue numb, as well as parts of that side of my face and neck. At the time my ENT said there was no way to predict if or when sensation would return. I also spoke to a neurologist who'd treated me the year before for an unrelated problem. He was even more discouraging and told me that if sensation were to come back it would be within the first month or so.

Yet my RO said that in her opinion a return could take a lot longer - up to 5 years.

Anywho, here it is 21 months later and, alas, very little sensation has returned. I feel a bit of pressure when I run my teeth over that side, but it's still nothing like a normal feeling. And I'm always aware of a kind of subtle tingling. Maybe that's a good thing!

Parts of my face have returned to action however, although the "caved in" area under my left jaw is still pretty much dead to the touch. On a positive note, the facial hair on that side returned fairly quickly last year.

Along with the numb tongue of course comes numb taste buds. Dunno about the hot-cold thing, but certainly things just don't taste as vivid as they did before.

So in sum: don't panic. I have a feeling many of us have gone through this and had partial or complete return of sensation. I do note progress in my own case, and because of this would love to believe my oncologist that I might feel more and more over the next few years.

Hang in there and please keep us posted.

David 2

I'm a month out from a right sided sided hemiglossectomy and notice that that the tongue is slightly numb, but also that my taste sensation seems "blunted". Things don't taste as vibrant as they used to. ENT says different people recover at different rates but would not be surprised if it took as long as 6 months to fully recover. Unfortunately I have to have some additional surgery on the tongue since high grade dysplasia was seen adjacent to the tumor on the final path report. This is a precancerous lesion and needs to be removed.

It will be 2 years in April for me. If I eat crackers it feels like I'm eating sandpaper. If I eat any dairy products my tongue feels twice the size. I still talk with a lisp and if I talk too fast my words run together. When this happens my friends and I look at each other and laugh, what the heck did she just say...Oh, here's a goodie some food sticks to my teeth and I don't know it..... not a pretty picture. My cheek is some what numb I usually pinch it and it wakes up if that makes any sense.

Yes, we are all recover in our own way.