I was wondering if anyone here has had SCC where a smaller portion of the tongue was removed and no flap reconstruction was done, no chemo and no radiation - just a small biograft at the site where the piece of tongue was removed. That is my situation, which I am constantly told is "lucky."

Originally, my doctor had estimated that roughly almost half of my tongue would have to be removed and flap reconstruction done but once they got in, everything changed for the better. As a result, my in-patient time was reduced from the originally anticipated 7-10 days to 4 days. I am thankful that things took the turn they did - I'm actually thankful for every day.

However - I have ADHD so patience is not one of my strengths. I'm just wondering if anyone here is in a similar situation as me who may be able to tell me whether I MIGHT regain more feeling in the right side (where the tumor was) of my tongue. I still have some stitches in there - my surgery was on April 11th (yes, I know I need to be patient). I did also have neck dissection during which 29 lymph nodes were removed as a precaution. As a result, I still have a great deal of numbness surrounding the incision, but the incision itself is healing nicely. It seems like I have sort of an indentation near part of the incision - I don't know if that will eventually sort of stabilize to look more normal or not. There is still a swollen area just below my right jawline - I hope that eventually goes away. I was ecstatic when I realized that feeling in my earlobe had returned so I'm hoping that eventually I'll have lots more feeling than I do today. My right lower lip doesn't respond like the other side, making my smile look lobsided - I'm hoping that with time, that will go away - I exercise my lip and tongue using a tongue depressor - so I know that the lip DOES function, it just doesn't respond all the time or the same as the other side of the lip.

I think what tests my patience the most, however, is the numbness I still have on my tongue where they removed the piece of it. Last week, I began to feel a slight burning sensation right at the site - where the stitches are now. The nurse told me that could be nerve regeneration. I'm just wondering if eventually I will get more sensation back on that side of my tongue - I hope so. At times, eating drives me nuts because I'll try to eat on my right side - the surgery side - and due to my lack of sensation there, I'm not able to very successfully push food around correctly and end up basically fighting my food to get it back to the left side where I can more easily manipulate it with my tongue.

Am I just having unrealistic expectations of myself at almost 1-month out from my surgery? Until my cancer, I have never, ever had any sort of ailment or injury that I've had to take so much time to recouperate from.

I've been doing some reading about what vitamins and herbs have been shown to aid in nerve regeneration as I want to do whatever I can to help things along...

Ok folks, feel free to give me your opinions - they are welcome and valued!

Thanks in advance,

Impatient and ADHD - Pepper

Hi Pepper, My situation is almost like yours. I had 2 surgeries, a piece of tongue removed (around 15%) and my doc made what he calls primmary closure, to close the tongue with the tip of it. I get free margins, no perineural invasion and nodes free. No reconstruction. No rads or chemo.

My tumour size and no nodes made me stage one and hope to keep in this stage and cancer free forever!

Googd luck on your recovery

Hi PepperPotts (cute handle)

I can't comment on your surgery as Alex didn't have any. However, I regularly read posts from people who think recovery isn't fast enough. My feeling is that if stitches are still there, then healing is nowhere near complete so the frustrations you describe are probably normal.

Pepper,

I had the same surgery as you. Way too early for everything to fall into place. My lip was lopsided also that straightened out give it time. MY ND was in the crease of my neck it doesn't show but I'm much older than you. I'm sure in time yours won't be seen either. My tongue is still numb on the left side where I had the surgery I'm 3 years out. I still get the tingle feeling I was told it's the nerves. Yes, I did have the burning sensation for a long time after surgery but that's gone now.

I have problems talking with the sounds "s" "ch" and "sh" I ask others if they hear it they all say no I think they are just saying that to make me feel better, but I sure as hell can hear it. It makes me not want to talk much, maybe that's a good thing it'll keep me out of trouble:)

Don't worry it will get better give it time.

Take care,
Connie

Hi there well I had similar surgery as I have mentioned before - everyone heals at their own pace but six weeks is usually optimum for healing. With regards to the neck dissection - you may always be numb in certain areas, I had ten more nodes removed, than you but I can feel pressure on my neck from under my ear but no real sensation and it's been 15 months. Did your dr give you visible neck stitches? I was shocked when I found out that the don't routinely hide them, my dr. God bless him gave me invisible stitches so it's healed to a fine thin line. My neck also still feels tight - now I had radiation so that likely has some bearing but to touch it is soft and looks completely normal, even the scar from my trache has smoothed out

I can't comment on the tongue - much - because I did have a reconstruction, but the burning is likely healing an nerve regeneration. You will heal just give yourself time. Good luck and take care,

I had 1/3 of my tongue removed and radiation a little over a year ago. I still have not regained sensation on the left side of my tongue where they removed the tumor and don;t expect to. When the nerves are cut, they do not grow back. You will get used to it -- it's not that bad.

Good luck!

Hi! I'm new to the group and was looking through the post-treatment topics because I actually have some of the same issues you're having. I also had only a partial glossectomy (25%) and neck dissection (17 nodes) done the first bout (June 2010). The tongue did heal and regenerate fairly quickly (maybe 6-8 weeks), although it left a divot in my tongue. I still have a weird, numb sensation where the surgery was done and I find myself chewing on the other side of my mouth. Someone mentioned that saying some words is tougher (people can't tell if I'm saying "s" or "f"), and whistling is almost impossible to do. The neck healed well enough that the scar really didn't show. I had a recurrence in one of the lymph nodes in the neck (Jan. 2011 - 18 nodes removed), and also had chemo and radiation. So the second dissection and the doc having to take a muscle from there left a bigger scar and an indentation in my neck. The numb sensation in the ear has eased a bit but is still there. Neck mobility and some twinges in the neck are an issue, but that could be from a combination of the dissection, the muscle being removed, and the radiation. If anyone reads this and could offer some insight, I'd appreciate it. (Not trying to barge in on your post.) If not, I'll add a separate post.

I am 10 months after very 'superficial' CO2 laser surgery as my ENT surgeon puts and unfortunately I too have numbness, which he states I should not have as "no nerves were involved". I also nerve pain to the tip of my tongue. I take medication for the nerve pain. I too have a mild speech impediment that stifles me from talking too much for too long and definitely if I am tired when it gets waaaaay worse.

So it seems that tongue numbness has its own life, for some it improves, goes away and others it becomes the new norm. I hope for us both that we see/feel a marked improvement...in the meantime, if you can avoid it...stop playing with the area.

I too find myself playing, chewing, thrusting my tongue out as it still feels swollen, awkward and abnormal. Thing is the chewing motion can be considered "irritating" the tongue and oral surgeons suggested that might have been the cause (of my lychen planus)in the first place as it was a habit I had as a shy and kid. Then stopped in adolesence and have picked it up again since my surgeries. Its almost a OCD thing with me now, dont let it become that for you. :P

Fingers crossed that your numbness subsides quickly