| 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 | Monica, if you havent done so already, talk with your doc about this problem. Im not familiar with why someone who hasnt had radiation would develop trismus. Im sure there are many other things that cause trismus, I just am not aware of them. Hopefully since yours was not caused by radiation that it is easier to cure. 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 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Perhaps the ND severed/damaged a nerve?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Nov 2010 Posts: 49 | My doctor didn't seem too concerned - just gave me a box of tongue depressors with vague instructions (thank god for this thread or I'd have no idea) and said it should be ok within a few weeks. I saw an acupuncturist the other day who seemed to think it was maybe caused by the trauma to my mouth in general- muscles going on strike. He seemed to think he could alleviate both the nerve damage and trismus in a few sessions, so fingers crossed. I don't see my doc again till after xmas.
Monica,33 Mum of 3. Former smoker SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision. Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
| | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | My trismus occurred due to the type of surgery and was at its worst prior to radiation. It was first diagnosed and became a concern when I met with my RO for the first time to discuss my radiation. It was so bad that he could not even start my radiation until it improved because I couldn't open my mouth wide enough to get a tongue guard in my mouth. Right then and there he gave me the therabite and had me begin exercises for a week. I made pretty good progress the first month went from about a 14 to a 21 (which is about 2 fingers). This is where I got stuck. I have not been able to make any progress. I have now passed the one year, since treatment. I have learned to eat with this but I worry about if I have to have any dental work. How would they be able to do anything in the back?
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Nov 2010 Posts: 49 | Hi Sharon, yes that is worrying that you still have it one year down the track. I'm due for dental work which I've put off till next year - hopefully I'll be able to open my mouth by then I've just got back from the acupuncturist now actually - it definetly feels loser but I can still only just get 2 fingers in. The acupuncturist said if this doesn't work we could try acupuncture with an electro current to really stimulate the muscle- sounds a bit scary though! It's hard to work out if its muscle or joint in nature though
Last edited by monicacc; 12-09-2010 08:04 PM.
Monica,33 Mum of 3. Former smoker SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision. Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
| | | | Joined: Jun 2010 Posts: 87 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2010 Posts: 87 | My PT told me you can develop trismus if you bleed into any of the muscles involved in opening the jaw during surgery. They are apparently super sensitive to having any bleeding into them and will spasm as a result. Also, if your mouth is out of alignment at all during the surgery, that can cause trismus. He said some people develop trismus just from having their wisdom teeth out!
Susan Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland. 10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck. T1N0M0. IMRT started 11/22. Never smoked, light social drinker Also happen to be ICU RN | | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | I am sure mine was caused by the length of time that my mouth was stretched open during surgery.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Nov 2010 Posts: 49 | yep, I also read somewhere that wisdom teeth removal can cause trismus but that it usually fixes itself in 2 weeks. Its been 4 weeks for me now. I also think it must have been the stretching during surgery....
Monica,33 Mum of 3. Former smoker SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision. Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
| | | | Joined: Oct 2010 Posts: 15 Member | Member Joined: Oct 2010 Posts: 15 | Hi, Christine! Just an FYI: trismus can develop--and does, in a majority of cases--in anybody who's had a muscle cut or their jaw unhinged/muscle stretched during a transoral approach surgery. It's a different process than with radiation, where the muscle tissue is replaced by collagen. In the surgery-related trismus, the jaw muscle is injured and tightens up (just as any muscle does) in an attempt to prevent further injury. The main difference seems to be that surgery-related trismus is more amenable to treatment than the radiation-related. This is due to the muscle still being intact. Nonetheless, it sucks.  --Jo
Polymorphic Low-Grade Adenocarcinoma (PLGA), dx'ed 9/10. Surgery 10/20/10--resection of soft palate and right hard palate. Of the 36,000 oral cancers dignosed in a year, I get the one that sounds like a golf tournament. Sheesh.
| | | | Joined: Mar 2013 Posts: 5 Member | Member Joined: Mar 2013 Posts: 5 | I recently had similar cancer and surgery to yours and am new to the forum. I know you haven't posted in a couple of years, but thought you may still be in contact and wondered how you are doing. Since our type is somewhat rare, I thought it may be helpful.
2/13/13 biopsy tumor on palate 2/20/13 dx stg 4 adenocarcinoma minor salivary glnds 2/22/13 seen at cancer center 3/14/13 surgery w/obturator placement 3/22/13 new path rprt - downgraded to stg 1 - had expected radiationm, now not deemed necessary | | |
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