| | Joined: Jun 2010 Posts: 5 Member | OP  Member
Joined: Jun 2010 Posts: 5 | I have had sugery and radiotheraphy now one sid of my tounge vibrates and pains severly any else had this or knows why
non smoker non drinker
48
maglimant 14/10/09
operation 21/10/09 flap
radical radiotherpaph 4 weeks
| | | | | 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 | I havent heard of vibrations before. As far as pain goes, Im familiar with how much it can hurt healing from surgery. Hope you feel better soon.
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: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Hi Peter, I call it a burning feeling, but yes you could call it a vibration. My pain has been pretty severe. I think becouse it is so constant. I am still not totally off pain killers. I had to have a surgery to loosen my tongue, it was tethered to the floor of my mouth about 4 -5 weeks ago and the burn has started all over again. I have asked many times and never seem to get an answer as to how long it will last. But I find it very exhausting. It looks like your surgery was similar to mine, time and description. So if your gets better let me know.
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
| | | | | Joined: Jun 2010 Posts: 5 Member | | OP Member
Joined: Jun 2010 Posts: 5 | Hi thanks for your reply my surgen said it will be there all the time nerve damage with surgery
non smoker non drinker
48
maglimant 14/10/09
operation 21/10/09 flap
radical radiotherpaph 4 weeks
| | | | | 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 have the burning issue but no vibrations ever. I have had 3 pieces of my tongue removed and the muscle is about all that is left . Think it needs weight training and exercises to make it tougher so it doesn't hurt from morning till nite.
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 | Hi peter, the only way I have found to deal with it, without being stoned all the time. I find in the morning the pain/burning is the least as the day goes the pain gets more severe. So I take 2 tramadohl in the morning and then 2 percocet at about 6pm. It seems to help if I can just get relief in the evening from the constant burn. Some days are better than others and some days I take an extra dose of tramadahl in the afternoon. I sure hope the pain won't last forever!!
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
| | | | | Joined: Jan 2007 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2007 Posts: 97 | Dear Peter-
You might ask your doctor about a medication called Neurontin(generic Gabapentin), it helps with pain caused by nerve damage. After I had a bunch of nerves severed in my face there was painful "tingling" sensations, and the Neurontin helps with it.
Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
| | | | | 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 | Hi Peter, You may want to read one of my earlier posts where I list some possibilities after a visit with my oral surgeon. "3. The �Raw spot Feeling� and �Burning Mouth Syndrome� could be due to damaged nerves/nerve endings from surgery (Neuropathic pain)."http://oralcancersupport.org/forums...;Main=10572&Number=118747#Post118747
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
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