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#185294 09-19-2014 10:24 AM
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Talim75 Offline OP
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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

Talim75 #185299 09-19-2014 02:28 PM
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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.


Christine
SCC 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 smile
Talim75 #185325 09-20-2014 02:59 PM
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Talim75 Offline OP
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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

Talim75 #185430 09-23-2014 04:55 PM
Joined: Sep 2014
Posts: 27
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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

Talim75 #185434 09-23-2014 06:35 PM
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Ask the doc for prescription pain meds and magic mouthwash.


Christine
SCC 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 smile
Talim75 #185452 09-24-2014 05:13 PM
Joined: Sep 2014
Posts: 27
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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

Talim75 #185498 09-26-2014 11:02 AM
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Posts: 87
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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
Sandy1028 #186345 11-02-2014 12:14 PM
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Posts: 42
Talim75 Offline OP
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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

Talim75 #186396 11-04-2014 01:12 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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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
Talim75 #187053 12-05-2014 10:24 PM
Joined: Jun 2013
Posts: 346
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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. frown 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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