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Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Joined: Jun 2007
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The therabyte is usually very expensive (anywhere from $350 to $800 without using medical insurance) and does the same thing as the tongue depressors. Ive used both and for me the tongue depressors did better. I had the help of a great physical therapist who really knew how to get the most range of motion out of me. Theres even another device thats similar but Im sorry I forget the name of it.

When doing rads, scar tissue builds up making jaw openings limited. Feels to me like they contract slowly over time. Unfortunately often patients dont see any major advances. One thing I noticed, as soon as I stopped or cut back on the exercises, my jaws tightened up again. With lots of hard work and dedication your husband can make some progress, it may not be as much as hoped but he should gain some range of motion after doing the exercises.

Good luck!!!!


Interesting study comparing therabyte to using tongue depressors


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: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
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The other is called Dynasplint, which was said to be better than Therabite, although I never used either. I've used tongue depressors too, and manual manipalation with my fingers by crossing my index finger and thumb, placing the thumb on the top teeth, and index finger on the bottom teeth, and slowly stretching, holding, repeat several times.

There is another type of acrylic resin "cork screw' devise for trismus that didn't look too friendly for my teeth, and invisioned it getting stuck too, so I never used it either.


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






Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I meant to chime in earlier about feeding tube issues. I hear a lot about seepage around the stoma and in almost nine months now, I have used less than ten gauze between my tube and skin. I have had few acid issues and my stoma is rarely red. All my doctors have asked me what I do and they ask to see my stoma every visit now to catch me irritated or in pain. A new GI Doctor even asked some nurses to come look. I work really hard to keep the acid manageable and I only clean my stoma once a day when I get up in the mornings.

I got rid of the 4 X 4 gauze as my skin is sensitive and tape is a bad thing for me. I have worked with the DME I use and switched to 2 X 2 which stay well withiut tape. I also have used baking soda at the first sign of seepage to eliminate skin breakdown. If a little baking soda doesn't help, I have even sprayed Spry xylitol spray since xylitol is antibacterial.

My supply list includes Clobetasol, one of the strongest corticosteroid ointments when any red pops up. The only bacteria of concern to me is staphlococcus aureus that causes skin infections and Mupirocin, generic Bactroban, works the best for skin infections. With a bad injury, I used Desitin as a protectant for 4 days.

I also only get seepage with formula and it is worse when I travel with a continuous feed pump for hours.


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
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
In the 4 years Kris had the PEG, he never used anything. No gauze, nothing.
He never had any issues, except the occasional over granulation. For this , he used Maxitrol eye ointment. ( it works)

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!
Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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Tammy, this is the first time I've heard of anyone else not using anything. I'm glad to hear it. I have silver nitrate sticks left over from my bad burn. If I get a granuloma, that's what I'm using. It might hurt but it repairs things quickly. I'll have to check out what's in Maxitrol. Thank you!


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
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
I had two peg tubes, one for five years with intermittent use, and for the most part, didn't use any gauze or buffer either. I found the moisture from them promoted bacteria, even though drying the area with a hair dryer, and applying Bactrim or clotrimizole ointment when needed, and some doctors said you can develop a resistance from frequent use of the antibacterial or antifungal. They were probably trying to talk me into taking the peg out after treatment was done, but it wasn't my first or would be my last treatment, and I didn't want to go through removing and putting one back in again like before, so I kept it, and eventually needed it again.

I've used the mesh type band to secure it sometimes, other times nothing. Tape made my skin itchy and red also.

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






Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
Paul B, I have some tape I would like for you to try if you would like. It is amazing. It is used to tape an ng tube to newborn NICU patients cheeks in some Seattle hospitals. I buy it on Amazon and use to secure my long g tube across my stomach. I use three strips at a time. I am allergic to most all tape and the sensitive skin tape was outrageous to buy. It leaves no residue, stays on in the shower and has never accidentally come off. If you would like to try it, send me a pm with your address and I will send you several strips in an envelope.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Jo, do you know the name of the tape? It sounds like this could be a big help to many people here. Thank you!


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: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Thank you, Jo! I had my peg tube taken out in 2015, after the tube cracked from wear and tear after 5 years, and wasn't using it anymore anyway. I needed another procedure because the stoma wasn't closing on its own, probably from having it for a while, but everything is ok now. Sounds like tape many would try, as Christine mentioned.

Thank you


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






Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
The tape is called self-adhesive dressing Retention sheet. The company is called Reliamed. I order a couple of boxes at a time. It runs about $ 12.00 a box. It comes in different sizes, I use the 4 inch x 11 yards. It comes in a roll and has grid lines on the back. I cut the strips on every other grid line making each strip about 3/4 inches wide. It takes me about 20 minutes to cut the whole roll and it lasts about a month and a half. I use three strips each time, so, I use about 24 strips a day changing it after a shower, each feeding and each medicine dose. I have never had a piece come loose even in the shower, it is easy to remove and leaves no residue. I can not say enough good about this tape and have left several 5 star reviews at Amazon. I started out using regular tape which caused real problems, then changed to sensitive tape which quadrupled in price the third month even at Walmart till I was told about this tape. My niece who works in an NICU at a hospital in Seattle tells me they use this tape on the babies faces to hold down their NG tube. The hospital quit ordering it and the nurses were so upset they bought it on their own to use for the babies till the hospital started ordering it again. If anyone would like to try it, I would be glad to send some in an envelope to them, just let me know.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

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