#68055 01-21-2008 10:03 AM | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | OP  Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | I am almost 6 mos. post surgery from hemiglossectomy taking about 1/3 of my tongue. Still have the PEG, but am taking some soups, chowders and such. Every now and then, and I feel that it's something that I am subconsciously doing, my mouth locks creating a vacuum, that unless I am really paying attention, will actually force release of my lips making a loud 'pop,' and it hurts my still healing tongue. I think it must have something to do with my swallowing, and having grown accustomed to keeping my mouth closed and my teeth almost locked at the jaws. Am I just overreacting, overthinking this thing, or what? Because it happens several times during the day and is quite painful... seems associated with my breathing through the nose and swallowing... anyone else experience this type of dynamic? I am trying my best to pay close attention to what I am doing, but sometimes it just happens anyway. Ideas? Advice? Similar problems? Thanks in advance.
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | 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 |
Sorry John, I have never heard of that before. My jaw tightens from time to time, but nothing like what you described. Have you asked your doctors?
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 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | It sounds like you may have trismus. Can you open your mouth and insert 3-4 fingers (in a line)?
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Gary and Christine,
Thanks... the issue has been resolved. Let it suffice to say that I serve as another example of why this website is such a wonderful thing. Through posting my question I found some help from a friend I never knew I had! It is sort of a lock that occurs naturally, but by focusing on my jaw muscles, tongue, and all involved with these natural reflexes it is relatively easy to keep it from happening. It has been a matter of focus involving too much post surgery, post radiation contemplation and keeping my mouth closed... This site is simply wonderful, my only wish it that I had found it sooner. Thanks for your input and concern... and Gary, what's trismus?
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | John - until Gary can get back to you, you can get lots of info on trismus by clicking on the OCF Main Site (top of this page, left) and then at the main site scroll down and click on the Search button and just type in "trismus" in the blank and you will see several results for trismus.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jan 2008 Posts: 82 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: Jan 2008 Posts: 82 | Anne-Marie,
Thank you. Following your suggestion, I realize now that trismus was possibly a problem for me in that all the muscles associated with the jaw and neck and tongue have been a major focus for me, especially since I came out from under the pain meds... yawning, at first, was painful and I very closely monitored practically every move I made that was above my shoulders because the smallest thing could distract me and possibly cause pain. The swallowing thing, however, is different, but as I said, it's getting better... before, it was happening more than 5-10 times a day, now less than 2-3 unless it absolutely catches me off guard. I appreciate your concern. I must remember the search button and the wealth of information we have here!
John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
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