| | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | OP  "OCF Down Under" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 49 | AS I have not been able to open my mouth much due to the lock jaw, I havent had a really good look at my tongue. Today after some accupuncture my mouth was much less stiff and I had a really good look. It appears that the tongue, or at least scar tissue at the site of surgery, has fused to both the floor of my mouth and partly to my very back molars. I was able to get a finger in there painfully and push it off the teeth but the part that is stuck to the floor of my mouth is stuck solid and hurts to try and push it off. I think its scar tissue- I do have a tendency toward kelloid tissue. Has anyone had this happen? I've made an appointment to see my doctor tomorrow but I'm terrified of having to have more surgery  help please!
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Since your surgery was only last month it is still swollen. It can take months for swelling to completely subside. If you are worried then you are doing the right thing with seeing the doctor. Its not possible to tell you what it is over the computer. Just cuz it doesnt look right to you that doesnt mean you will need any future operations.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 49 | thanks Christine. Its swollen yes but also stuck to the bottom of my mouth which is worrying
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: 49 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 49 | saw my doc- nothing to worry about  Its not stuck just very stiff. need to keep doing the tongue exercises and use my fingers to move the tongue around so it doesn't atrophy. phew
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Glad that you do not have a problem. When in doubt, always go see a doctor. Bet you feel so relieved!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 49 | yes relieved but still worreid about long term effects- I guess it will never be the same again. It still seems that the side that was operated on has more attached to the floor of mouth than the other side does- but I guess that's because they've cut a centimetere off it and I'm looking at like it should be the same as the other side. I'm worried I'll never be able to kiss my partner passionatley again or talk without a lisp. For those who've had a similar partial glossectomy (without a free flap) - what's it like kissing now? Do you still have speech defects?
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | That can last a long time. I still can't atick this part of a tongue out. Don't try to force it out as you could make it worse and create hugh pain. LOL I just had to return a call to the Lodge and that poor guy could only understand part of our conversation. I ended up spelling what I had to tell him. So go easy and like everything, it takes time.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | My tongue actually did get "tied" by scar tissue after my mandiblectomy. When I had the nerve graft surgery they clipped the scar tissue anchoring my tongue and did another skin graft rebuilding some of the lining in my mouth to help function. Now my function isn't great but it works and eating solids, talking is better.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2010 Posts: 87 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 87 | My tongue is actually "tethered" (surgeon's terminology) to the floor of my mouth from the surgery, but the surgeon had told me going into the surgery that it would be. I can't stick my tongue out very far either. I guess eventually I will get used to it. Will be interesting the first time I go to get my teeth cleaned!
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: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 | My tongue was a bit tethered from the biopsy to remove SCC from the floor of my mouth and the second excision removing the carcinoma in situ (most of the floor on the right side) furthered the tethering. I can't stick my tongue out but fortunately can move it around fairly well two months post surgery.
As a massage therapist I frequently massage scars on my clients. Adhesions often form under scars but the connective tissue forming these adhesions can be softened up by gentle pressure and massage. I get a finger in there and gently press on the areas where it hurts and gently inch my finger along the scar. Slowly the tissue begins to give way and I have more mobility. My doc says I can't hurt anything so I do this regularly- in privacy of course! :-) It's not a permanent fix but it does help. Good luck!
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
| | | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 49 | thanks Catherine- that sounds exactly like what I have and its been nearly 2 months for me too. Will try massaging. It makes sense to massage the scar as I massage the neck scar also
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: Jun 2014 Posts: 1 Member | | Member
Joined: Jun 2014 Posts: 1 | My tongue is also anchored to the floor of mouth and I have ulcer in right rear. I had surgery 4-22-14, back to Dr several times, he said to exercise tongue and massage it, now worst so swollen the teeth are making intention in tongue. I'm worried about the ulcer and swelling but I know it takes time. Had recent CT and another biopsy to rule out more cancer Negative. I will keep up my home work go back to ENT Nov. 2014. I did not have radiation said I didn't it. Speech OK | | |
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