| Joined: Jul 2014 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2014 Posts: 42 | I was just wondering what others' experiences with your flap have been. Since my surgery my tongue has a painful/sore throbbing and doing the exercises from the speech therapist really wears my tongue out. I expected it to feel somewhat sore, but not like this. Is this common? If so, then when did it subside for you? Does it just get better the stronger your tongue gets? I'm still having trouble sleeping as I feel so uncomfortable once I lay down to relax. I am able to eat solid foods again and swallowing isn't an issue, but I still have difficulties using my tongue to clean my mouth and control the food, so eating is painful also.
Female, Age 38, healthy non-smoker, rarely drank, regularly workout May 2014 noticed irritation on tongue 6/18 saw doctor 6/25 saw ENT specialist got biopsy 6/30 Dx HPV P16+ ve SCC tongue cancer 7/9 CT scans, no visible spread 8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia 4/2015 start to have ear pain 5/2015 recurrence 6/4/2015 surgery 29 nodes samples pN 2c 7/13/2015 7 wks of Chemo & Radiation start
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Im sorry to hear you are struggling with your recovery. Unfortunately this is completely normal. Many patients take months to adjust to their new tongue. With practice it will get easier. If your tongue needs to have further reconstruction surgery it will have to be after a full year has past. It can take that long to adjust and for the swelling to completely subside.
One pain medicine which I found very helpful was neurontin. This might help ease your pain as well, check with your doc.
Hang in there, In time it really will get better. 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: Jul 2014 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2014 Posts: 42 | Thank you very much for your reply. It isn't too terribly bad - definitely better than the pain that I had with the cancer tumor itself. I just was expecting more soreness than pain. Glad to hear that is is completely normal and just a part of the process. I just wanted to check before I bother my doctor. I had my post-surgery follow up appointment about 2 weeks ago and they were all very happy with the flap and my progress. I just didn't realize I would still be in pain. I'll have to come up with some way to relax and sleep more. Thanks for the advice.
Female, Age 38, healthy non-smoker, rarely drank, regularly workout May 2014 noticed irritation on tongue 6/18 saw doctor 6/25 saw ENT specialist got biopsy 6/30 Dx HPV P16+ ve SCC tongue cancer 7/9 CT scans, no visible spread 8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia 4/2015 start to have ear pain 5/2015 recurrence 6/4/2015 surgery 29 nodes samples pN 2c 7/13/2015 7 wks of Chemo & Radiation start
| | | | Joined: Sep 2014 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2014 Posts: 27 | Hi Talim75, You mention pain with your tumor. My best friend has a 3cm tumor on his tongue. We have not started treatment yet, all the prelim stuff happening this week. Did you find anything that eased the pain of talking and eating prior to treatment?
Caregiver BOT 3 cm 08/24/14 Pet Scan 09/24/14 localized Rad started 10/07/14 Cisplatin started 10/09/14 PEG 10/28/2014 Last Rad 11/26/14 Last Chemo 11/21/14
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Ask the doc for prescription pain meds and magic mouthwash. 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 2014 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2014 Posts: 27 | Thanks, yes he set us up with magic mouthwash today.
Caregiver BOT 3 cm 08/24/14 Pet Scan 09/24/14 localized Rad started 10/07/14 Cisplatin started 10/09/14 PEG 10/28/2014 Last Rad 11/26/14 Last Chemo 11/21/14
| | | | Joined: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2014 Posts: 87 Likes: 2 | Oh yeah, that magic mouthwash is wonderful! It really eases the discomfort. I used it for about two months or so, and went through almost 2 liters of it. I don't have pain or rawness anymore.
The dental team at the cancer center also recommended that I purchase a waterpik, use a baking soda and water based rinse, and they actually gave me a baby toothbrush with an ultra soft and small head. I found the toothbrush quite useful to hit some of the areas that were harder to reach, and was absolutely shocked to discover how much gunk I rinse out with the waterpik. I still use this now, as I find it somewhat difficult and uncomfortable to floss my teeth. Even months after my surgery and radiation, I still use the baking soda rinse after meals whenever I can.
Eating a greater variety of foods and moving beyond a mostly liquid diet took quite a while but it eventually improved for me. Clarity of speech also improved with time. Personally I still have some trouble with certain words, or especially when I have to spell something out - my D's sound like G's, so I have to resort to the old radio code (you know - Alpha, Bravo, Charlie, Whisky Tango Foxtrot, etc.) when people can't understand.
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker) SCC tongue stage III T3N0M0 subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital RAD 25 zaps 2014May5-2014Jun9 Back to work, paddling & hiking shortly afterwards
| | | | Joined: Jul 2014 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2014 Posts: 42 | They put me on hydrocodone, but truthfully towards the end it offered only a slight relief from the pain.
Last edited by Talim75; 11-02-2014 01:00 PM.
Female, Age 38, healthy non-smoker, rarely drank, regularly workout May 2014 noticed irritation on tongue 6/18 saw doctor 6/25 saw ENT specialist got biopsy 6/30 Dx HPV P16+ ve SCC tongue cancer 7/9 CT scans, no visible spread 8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia 4/2015 start to have ear pain 5/2015 recurrence 6/4/2015 surgery 29 nodes samples pN 2c 7/13/2015 7 wks of Chemo & Radiation start
| | | | 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 | Talim hopefully you are feeling a bit better. I know you've been through a big surgery but the flap shouldn't hurt, neither should your tongue really (post op yes. but this far out - almost 3 months - no). I get that it might be tired but usually by week 8 you should not be experiencing actual pain. Muscle strain yes (my tongue gets tired too, by the end of the night if I've talked alot I get a bit lispy and achy but nothing painful). SO I am going to go against the grain and say have them check it again and maybe ask for a scan. hugs and take care.
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: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Late to the thread here, and I certainly hope you are better by now, but I wanted to add that hydrocodone sort of 'wears off' if you use it too often. It's a component of my migraine medication, and I'm lucky that I only need it once or twice a month ... and even then, I can tell it works differently now than the first few times I took it. I know folks with worse migraines who get nothing from it. So ... not sure about tongue pain, since I was on stronger stuff post-op and then didn't need it as long as you have, but it might be that the med just isn't helping you correctly, either.
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
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