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#184457 08-23-2014 05:40 PM
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Hi. I'm now three months post radiation and doing pretty well in general. My trismus probs set in after my major surgery in February. For various reasons I have found it hard to carry out regular exercises to improve the situation but after the rads were all over and I started to heal, the mouth opening became a lot easier. A week or two ago I even had three fillings at the hospital dental clinic with no difficulty holding my mouth open. The fillings were in the front which made it easier but I didn't get the jaw ache I felt with every RT treatment where the tongue depressor forced my jaw open in a horrible way. Good news I thought.

BUT more recently I saw a prosthodontist about making me a more permanent dental plate. I had to wait 2 hours to see him for 5 minutes, so busy, busy was that clinic. It was therefore impossible to actually discuss stuff. He said my problems eating were not because of my lack of teeth but the "lack of room in there". I don't think he meant the flap etc but the lack of jaw opening. I immediately felt guilty about not stretching it more! I've been using the ice block (popsicle) stick method where I can only just fit 11 sticks between my top and bottom front teeth. That gives me a far better stretch than just using my fingers. However I keep making excuses not to do it: my teeth are loose so I might damage them; I'll do it later when I'm feeling chirpier; it doesn't make any difference anyway etc etc.

Any advice? I've looked up Trismus on the site and know about the Therabyte but maybe they're not available here???

And one more thing. I'm scared my old plate will break before I get the new one. What do people know about temporary gap fillers or veneers or dentures?

Love to all
M


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #184459 08-23-2014 06:01 PM
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There is another appliance called the dynasplint. Im not very familiar with it but think its similar to the therabyte.

If you can get back in a routine with the popsicle sticks again your jaw opening will immediately improve. You have to be dedicated which isnt always easy. There are way more excuses not to do the exercises than there are to do them (at least for me). When doing the popsicle sticks, are you inserting another one in the middle of the pack of sticks? You should be doing it on each side. At least thats how my physical therapist showed me, not in the front. I went thru heck years ago with radiation damage to my teeth making them so loose I thought they would just fall out when I was talking. I hope you have better luck than I did with keeping yours.

Veneers are kinda like paneling for your teeth. They are made of a very thin material that is bonded directly onto your teeth. Im not sure if the tooth has to be filed down first. Dentures are the whole upper or lower teeth or sometimes just a partial of it. As far as dentures go, molds would have to be made in order to get them. The molds are big, much too large for someone struggling with trismus. Thats one of the main reasons why I have been unable to get them.

Best wishes with your dental issues!


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
Alpaca #184471 08-23-2014 11:43 PM
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Kris couldn't even insert 1 finger Into his mouth 3 months post op.
I asked Rajan (head and neck surgeon ) about the therabyte but both he and Jonette ( SLT ) were not In favour ,saying that in their experience they didn't really achieve much opening.
Kris was told to use his fingers. Inserting them into his mouth sideways.
He started with just the one , flat as he couldn't get it in sideways. He did this at least every 30 mins, spending 5 minutes on stretching, especially when I was around to nag him. Slowly, he progressed to 2 then 3 fingers. It really is just committing to do the exercises.
On another note, Kris got a partial plate with teeth this week! Now when he opens his mouth there are some lovely teeth to see. This was paid for by our local hospital as Kris had been having problems with ulcers on his tongue flap. The partial plate is to alleviate this.
Even though he can get 3 fingers into his mouth , it was a mission for the technician to get his molds into Kris's mouth. In the end he made molds especially for Kris .
Get practicing. It does work.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Alpaca #184474 08-24-2014 05:15 AM
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Just another example how different everyone is. I used fingers only, had trismus real bad for just 2 weeks and almost full opening since. I used to use just a thumb and forefinger as a lever, alternating hands to evenly stretch the muscles. As they corded out, I never experienced the contraction I have all over the body. I also had acupuncture there during treatment. I don't know if that's the difference, though.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Alpaca #184480 08-24-2014 09:02 AM
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Posts: 79
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Hi there ,
I too had trismus , was given a therabyte to use as part of a study trial . Once treatment began I could only use it for the first 3 weeks felt to ill between week 3 and 6. Did try as often as I could once the treatment had finished and found it really did help . Seem to have a psychological problem with it now ( that's just me thought) it reminds me of bad times and when I was ill and very sickly so I've not used it for 5 months but I do daily stretches several times throughout the day . I can fit 3 fingers in my mouth and the dentist says there are no issues. My teeth don't seem to be have been affected but realise what's good today may not be tomorrow and vice versa! I continue to brush them religiously after eating anything and use Duraphat toothpaste on prescription twice a day with a natural toothpaste in between. Still have issues with a sore tongue but no where near as bad as it was. I've learnt from here that it can be up to 2 years after radiotherapy before healing is complete . Keep on with the stretches .... Worth the hassle!


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Alpaca #184487 08-24-2014 02:11 PM
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Posts: 644
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Alpaca Offline OP
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Thanks, folks. I'll persevere. I'm a bit mystified as to why the health professionals involved have been so casual about it. Maybe that's because I dislike the stretching so much I want someone to MAKE me do it. I'll persevere and then report back here in a month or so:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #184515 08-25-2014 12:34 AM
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Posts: 1,024
"OCF Kiwi Down Under"
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I also felt there was absolutely no emphasis on this. I didn't even know what trismus was until I researched why he couldn't open his mouth. No one had even told us about it.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Alpaca #184526 08-25-2014 07:04 AM
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Posts: 10,507
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My line of thought on this is the doctors focus on the cancer and ignore the collateral damage part of treatment. Unless they are pushed, many physicians only discuss the cancer and their plan of action. Ive noticed nurses tend to take up the role of explaining all the other little lovelies that go along with treatments. As patients, its those horrible side effects and after effects we are left to deal with on a daily basis which has a huge impact on our day to day lives. Very soon there will be a study coming out on the forum we all need to participate in to help the "other side" understand just how large of an impact this has on our lives. These things when put together with struggling to eat, feeling overall lousy, and counting calories and water intake can easily push many into depression and causes undue anxiety. But overall, its so much better to have these problems and have to deal with them than to have not made it thru.

Wishing you all the very best with everything!


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
Joined: Dec 2003
Posts: 2,606
Likes: 2
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[quote=ChristineB]My line of thought on this is the doctors focus on the cancer and ignore the collateral damage part of treatment. Unless they are pushed, many physicians only discuss the cancer and their plan of action. Ive noticed nurses tend to take up the role of explaining all the other little lovelies that go along with treatments.

...But overall, its so much better to have these problems and have to deal with them than to have not made it thru.[/quote]

This is perhaps the most profound thing I have ever heard. Thanks Christine!

Doctors are highly trained and educated in medicine. Many times, they have their minds and hands tied up in being current with treatment modalities and medicine to use during and after treatment.

Nurses, on the other hand, tend to follow many patients in terms of side effects and have seen about everything possible and what works for some, so they adapt to this role easily.

Everyone needs to know a good oncology nurse through this. They really focus on comfort care, in my opinion, and we'd be in a world of hurt without them. I, personally, have never had to experience a bad or even questionable oncology nurse so I am extremely biased.

Use a nurse...love a nurse...PRN!


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Alpaca #184540 08-25-2014 10:47 AM
Joined: Jan 2013
Posts: 1,291
Likes: 1
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Ditto on knowing who gives you the practical support to make it through the journey. I learned early that the nurses are the goto stars. Remember that single fact and your life will be much happier.

As to medical devices. There are many instances where I scream at the ridiculous cost of medical care. Yes! Popsicle sticks can work for many to allow one to incrementally increase the opening of your mouth. They are free with a box of Popsicles. Those specialized apparatus may be required for some but for most just grabbing a handful of tongue depressors is a lot lot cheaper and even more usable.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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