| Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Dec 2009 Posts: 63 | Hi folks Hope all are well.
Anyone else ever burnt skin off their flap?? I was told by my plastic surgeon there was only a slim chance i would get feeling in my "new" tongue...
well, put a spoonful of (way too hot) dinner in the other night on that side of my mouth and instantly felt it was too hot. At the time i figured the sensations must have come from parts of my mouth or tongue next to the flap and it just seemed to be from there, but a check in the mirror later and i realised it was so hot i'd burnt a very fine layer of skin off.
Now, the burnt area is red and still hurts a few days later.
I'm torn between being annoyed that i have pain in my mouth (again!) and excited that i can feel the new tongue.
As well as burning yourself (!!?), how have other people gone getting feeling back?
Cheers jon
Last edited by jonp; 12-17-2010 10:00 PM. Reason: typo
stage 2 scc in left oral tongue. 32 at dx removed 21/12/09 plus left neck dissection and upper arm flap. clear pathology 24/12/09 non-smoker active footballer/surfer social drinker lives stress-free!
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Jon, no ones ignoring you, I just haven't seen that question come up before. Surely there must be someone out there with the same experience.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | I think the question to ask here is how many people with a flap or a graft have ANY felling in it, indicating nerve regeneration? If there are some of you, has your feeling come back enough to know when something is beginning to hurt you?
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | I have no feeling in mine at all! I can only tell when I've bitten it if it gets in the way of my teeth closing all the way when eating. Occasionally I can sense temperature, particularly cold water, but I suspect that's more the surrounding tissue being affected than the free flap.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Dec 2009 Posts: 63 | I talked to plastic surgeon about it and he said they had connected nerves, but still didnt mean it would definitely get feeling.
Would be interesting to know how many people do...
Anyway, it healed well and pain was gone after a few days, just like any burn in your mouth.
So weird.
Cheers! jon
stage 2 scc in left oral tongue. 32 at dx removed 21/12/09 plus left neck dissection and upper arm flap. clear pathology 24/12/09 non-smoker active footballer/surfer social drinker lives stress-free!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Awesome that you have feeling - and surfing - heavy sigh - I only get to do it once or twice a year... Have fun!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | OK I CAN ANSWER THIS NOW, RON BURNT HIS! AND YES HE FEELS IT TOO WEIRD HE'S HAD HIS FOR LONGER THOUGH THAN A FEW DAYS HE GOT A MOUTHWASH FROM ENT TODAY TO HELP IT HEAL
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Jun 2005 Posts: 4 Member | Member Joined: Jun 2005 Posts: 4 | Hi Jon
I have feeling in my flap and my doctor was quite pleased to discover that nerves had grown in. Naturally my "store bought" tongue doesn't have taste (the rest of my tongue makes up for it), but Flappy (as I call it} seems to be more sensitive to heat and pressure than is my native tongue.
Even though it's been 6 years since surgery, I still have a paresthetic issue: whenever I touch the left side of my lower lip (the same side that Flappy is on), I get a sense of coolness on my flap, similar to a "York Peppermint Patty" sensation. Does this happen to anyone else?
Julia
T2N0M0 diagnosed 1/05. Hemiglossectomy & free flap resection 2/4/05; no rad or chemo.
| | | | Joined: Sep 2010 Posts: 24 Member | Member Joined: Sep 2010 Posts: 24 | I am 6 months out now. I have constant pins & needles effect on my flap 24/7 some times worse than others - I asked Dr. and he says it is a good thing as it is the nerve endings replenishing and could take up to 2 years. I think I have a little feeling in the flap and almost think I can feel the upper roof of my moth with the flap ..no taste there but some on the side of the flap where there is a small portion of original tongue. I was interested also if anyone gets more feelings after a time and if the numbness and pins & needles subside. Speach is better but I still feel like people think I am retarded. I asked my husband if singing my fav songs might be like a therapy and he laughed ..I asked why he laughed and he said he can;t imagine with my speach me being able to sing. But then said some people with speach impediments could sing so maybe??
54 Year Old Female Non Smoker - Non Drinker Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG | | |
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