| Joined: Nov 2010 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2010 Posts: 29 | 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
Leukoplakia 3/07, 34y.o. non-smoker/drinker Biopsy 3/08: clear (no monitoring suggested - grr) Biopsy 10/18/10: SCC, Stage 2 1. Surgery 11/15/10: glossectomy R side oral tongue & partial neck dissection. Margins, nodes & salivary gland clear! Subsequent MRIs/CTs/PETs: All clear! | | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Nov 2010 Posts: 49 | 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
Monica,33 Mum of 3. Former smoker SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision. Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
| | | | Joined: Nov 2010 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2010 Posts: 29 | Thanks, Monica. 2-6 months sounds much better than freaking out now.
:^) Rahel
Leukoplakia 3/07, 34y.o. non-smoker/drinker Biopsy 3/08: clear (no monitoring suggested - grr) Biopsy 10/18/10: SCC, Stage 2 1. Surgery 11/15/10: glossectomy R side oral tongue & partial neck dissection. Margins, nodes & salivary gland clear! Subsequent MRIs/CTs/PETs: All clear! | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | 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
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Jun 2010 Posts: 87 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2010 Posts: 87 | 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.
Susan Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland. 10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck. T1N0M0. IMRT started 11/22. Never smoked, light social drinker Also happen to be ICU RN | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | 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
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | 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
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Nov 2010 Posts: 3 Member | Member Joined: Nov 2010 Posts: 3 | 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.
Stage II, N0, SCC of left lateral tongue with high grade dysplasia adjacent to the SCC lesion. Hemiglossectomy with clear borders Oct 6 2010. Pending 2nd opinion, most likely MND in Jan 2011.
| | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | 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.
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I eat what is liquid or can be made soupy and smooth. Even mashed tatters feel like sand. Swis Magic MouthWash and get it down quick. Then coffee or water to make sure it goes on it's journey south.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Nov 2010 Posts: 29 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2010 Posts: 29 | Thanks, guys for all the perspective! I'll try to stay optimistic. :^)
Rahel
Leukoplakia 3/07, 34y.o. non-smoker/drinker Biopsy 3/08: clear (no monitoring suggested - grr) Biopsy 10/18/10: SCC, Stage 2 1. Surgery 11/15/10: glossectomy R side oral tongue & partial neck dissection. Margins, nodes & salivary gland clear! Subsequent MRIs/CTs/PETs: All clear! | | | | Joined: Apr 2010 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2010 Posts: 27 | I had a skin graft to rebuild the excised tumor (back bottom left side of tongue that recurred after radiation and surgery) and so I have part of my forearm as the graft. While I have no taste buds this all occurred in August and I am getting some pretty good sensation out of the graft site now, enough to where I have a wide variety of things I can eat, so I know my situation is different but hopefully you regain that feeling soon. Best wishes, Lisa
Lisa from Montana 40 years old squamous cell-left lateral tongue & lymph with free flap skin graft and re-section, PEG tube, Total Glossectomy without Laryngotomy April 2011 Still mouthy as hell plenty of war wounds craving a cheeseburger
***10/14/11 UPDATE--Lisa has passed away | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Rahel, I'll trade you this tongue with all of it's pain for your numb one and give you some boot too. LOL That might encourage me to try other things that hurt like crazy.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 177 | Hey all, My tongue is either numb and tingling or burning and stiff. Either way I always know it is there. (or was). I hope after 5 years it might be better. I am just past 1 year. Isn't it strange how none of us are exactly alike, our time tables or physical sensations, our healing or treatments. We are all unique! I guess that is why we all help each other so much and for that I am truly grateful.
Wendy
Wendy 46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
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