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#148449 - 04/18/12 03:25 AM Hello I am a first timer
watto Offline
"OCF Down Under"

Registered: 04/18/12
Posts: 1
Loc: Western Australia
Hello to everyone out there I wish I had known about this site four years ago I am 67 years old and retired at age 55 after 34 years in thge West Australian Police Force.I was diagnosed with a sqamous carcinoma in my neck in June 2008 and subsequently had neck surgery and 36 radiation treatments I have no saliva and no taste buds but hey I am still alive andnot suffering like alot of other people Unfortunately I was never advised by ANYONE doctors or nurses the effects this treatment would have on my jaw movement I do exercises but have recently hear about the THERABITE system and was thinkingof buying oneCan anyone let me know if they have used THERABITE and what results you have had Hoping to hear Stay safe everyone and keep smiling

#148450 - 04/18/12 04:09 AM Re: Hello I am a first timer [Re: watto]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9087
Loc: PA
Welcome to OCF! Glad to have another survivor join our ranks. We have several members from Australia. Many others have similar problems with trismus, myself included.

I had tried the therabite a few years ago. I used it along with going to a physical therapist. It did help to widen my mouth opening but it was very temporary. It would return to its original state within 24 hours and that was using it 2X per day every day. I also tried using wide popsicle stick stacked up, gradually adding another stick to the stack until my mouth was stretched to the point where it began to get painful. Same thing, temporary fix. My issues with trismus are the joints are damaged by radiation and it is not possible to correct this. Other people have mentioned much better results with using both the therabite and/or popsicle sticks.

I was fortunate enough to get a therapite from another member. When I stopped using it I passed it along to someone who found a needy patient. I asked them to tell the recipient to also pass the device to another person when they dont need it any longer as they can be expensive to buy.

Hope you have better luck than I did!
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

#148453 - 04/18/12 07:02 AM Re: Hello I am a first timer [Re: ChristineB]
LizGNZ Offline
"OCF Kiwi Down Under"

Registered: 04/14/12
Posts: 5
Loc: Dunedin, New Zealand
Hi, Watto - I'm just over the ditch in NZ. I am care-giver for my husband, Eric, who has had OC. He uses a Therabite. It HAS helped him increase his ability to open his mouth, but only to the maximum available with the device. It took him from one fingers breadth to just over two.

Removing his prosthesis is still difficult if he's tired and the very idea of impressions for a permanent obturator (prosthesis) with teeth attached is quite challenging. But we'll meet that if and when.

They are an expensive thing to get, so ask at your Hospital. I don't know what the funding policy is in Australia but you might qualify for assistance? Eric was lucky - having been diagnosed at our Dental School and being cared for there, with all mouth care since surgery, the Professor who has been treating him "found" one and gave it to him - brand new, no cost to us.

He had also used the spatula option, as Christine mentions above - but that caused far more discomfort than using the Therabite does. It's a case of perseverance, I guess. That and taking some pain control before starting, in the first instance. (He has some pink gel Xylocaine (?) that he can use to reduce discomfort inside his mouth - a temporary relief, but often enough to do what he has to do to regain a semblance of 'normal'.)

I just asked Eric and he said that though the spatula thing hurt more it was probably slightly more effective in the long-run and if he has to, he'll return to it to enable the next stage of his rehab.

Good luck!

CG to husband. Dx Sept 2010 SCC L maxilla. Tx Nov 2010 - maxillectomy, L selective neck dissection, levels 1 - 3.
6 wks radiation 30 sessions, Jan - Mar 2011.
Occasional drinker, non-smoker.

Together we are determined to overcome this beast and defeat it.

#148459 - 04/18/12 11:46 AM Re: Hello I am a first timer [Re: LizGNZ]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi there and welcome. I know I sound like a broken record.... to some who may or may not read my posts. I would consult a naturopath as well, about having acupuncture... There are different kinds there's laser acupuncture - nd needles . I'm not sure what effect it will have so far of treatment. But it really helped me loosen my neck and jaw. He finds th uncomfortable knot in my jaw - just at the hinge the puts a needle in there - the idea is to return blood flow to the area and thus help prevent fibrosis and stiffening - its helped so far smile good luck!
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

#148486 - 04/18/12 11:42 PM Re: Hello I am a first timer [Re: Cheryld]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
Hi and welcome to the OCF from a fellow Aussie.
I am sure that Liz smile in NZ is closer to me than you are clear across the country in WA.
Not having had radiation I am not able to be of much help but I see that you already have been given some very good information.
I like your positive attitude and wish you good luck with your after treatment issues.
Please stay in touch with this wonderful forum.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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