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#168665 07-30-2013 04:43 PM
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I'm having increasing difficulty opening my mouth post-tonsillectomy. Did anyone else have this issue? Does surgically triggered trismus resolve on its own?

Thanks --


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Mamacita #168667 07-30-2013 05:02 PM
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Hi MamaC

Yes, a little bit for me post 2nd tonsillectomy/rads etc.

Here's some exercises given to me by my SLP at Johns Hopkins.


Ideally to be performed 1-3X daily

Jaw Opening
Open your jaw as wide as you can until you feel stretching, but no pain. Hold this position for 5 seconds, Relax. Repeat 10X

Side-to-Side Movement
Move your jaw to the right as far as you can until it pulls but doesn not hurt. Hold it there for 5 seconds. Relax. Repeat 10X

Same exercise to the left.

Increasing Circular Jaw Movement
Pretend to chew (as though you were chewing gum) in small circles with mouth closed, rotating to the right and then to the left. Alternate right and left for a total of 20 times.

Mouth Opening Check
Monitor mouth/jaw opening. Insert three fingers (between thumb and pinky) into mouth. You should be able to do this easily.



There are some others but these are pretty standard fare. Consulting with a Speech/Language Pathologist would be prudent should these difficulties with your mouth persist.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Mamacita #168668 07-30-2013 05:11 PM
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Thanks so much T, I will start doing those.

Down to 2 fingers, and barely at that. I'm sure my friends would tell you I was originally in the 5+ finger range for sure....


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Mamacita #168670 07-30-2013 05:20 PM
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One of the other exercises I was told to do is stretch your mouth opening by spreading your fingers a little bit in your mouth. Just enough that you feel the stretch but no pain. hold for 5 seconds and repeat 10X.

There's a device called a Therabite that's used for trismus but it's pretty pricey. For severe cases it may help alleviate and help the issue. However, fingers are far less costly wink

BTW... these are fun to do in the car... the looks and reaction from other drivers is rather amusing ~lol~

"T"

Last edited by fishmanpa; 07-30-2013 05:25 PM. Reason: add a note

57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Mamacita #168676 07-30-2013 07:17 PM
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It's the thumb, and index finger crossed, the thumb on the upper teeth, and index finger on the lower teeth, and slowly apple pressure up, down at the same time, hold 5 seconds, release pressure, and repeat. There is also Dynasplint, similar to therabite, but don't know which is cheaper. You have to do mouth exercise, especially the first several months, otherwise exercises will be of limited help in the future. Check with your doctor being you just had surgery.

It can be from radiation, but see none in your signature. The lockjaw is usually referred to as TMJ.

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Mamacita #168678 07-30-2013 07:34 PM
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In addition to the therabyte and dynasplint there are good old tongue depressors. I have seen a physical therapist who helped me with these. Take stacks of them and put them on each side of your mouth. Start out by putting about 5 on each side. Then slide one between the tongue depressors on each side until you are stretching your mouth open. When you feel you hit your limit, hold it for about 10 seconds and try to put one more in the stack. Hold it for 30 seconds and then gradually take them out. Repeat at least 3 more times per day. Of course like with anything, check this with your doc prior to starting.

I would check to see if your doctor can recommend a good physical therapist. Ask for someone who has helped oral cancer patients with this type of situation.

Good luck!!!


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
ChristineB #168686 07-31-2013 05:45 AM
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Yes Christine,

In some more severe cases tongue depressors are great. They're cheap too!

Speaking of Johns Hopkins. I have an entire notebook with information from relieving dry mouth to PT exercises for the arm and shoulder compromised from neck surgery. All I need to do is re-type them into MS Word docs and save to post. Very useful and informative. Of course, checking with your doctors before doing anything is prudent.


Again, from my SLP @ JH.

"T"


Tongue Depressors (only if <30mm MIO)
Use wooden tongue depressors, adding one more each day, hold between upper and lower teeth or gums (about 1/4 of stick in mouth). Try to increase to 30 seconds.

Alternately, use one tongue depressor and slowly turn it from flat to sideways, gently stretching mouth opening to accommodate. Again, hold for 10-30 seconds as tolerated.


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Mamacita #168748 08-01-2013 05:25 PM
Joined: Jun 2013
Posts: 262
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Thank you T, Christine and Paul -- Got a whole stack of tongue blades at the doc and will put them to use.


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Mamacita #168990 08-08-2013 01:27 PM
Joined: Aug 2013
Posts: 144
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Posts: 144
I have noticed that first thing in the morning that my mouth is harder to open than the rest of the day. I am sure this is due to not opening my mouth all night. I sing in the shower and that helps get my mouth moving and its fun too.


. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.

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