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Joined: May 2007
Posts: 39
JT2 Offline
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: May 2007
Posts: 39
Hello forum;

I haven't posted in some time, but can pass on some information about the Therabite system.

First of all, it requires a lot of discipline and in order for it to be effective, it will have to travel with you at all times.

I found it very effective. At the outset of treatment, I could open my mouth 19mm unassisted, and 23mm assisted (by the Therabite...). After 3 months, and a very aggressive treatment plan, I could open my mouth 27mm unassisted, and over 30mm assisted! I understand the normal opening is no less than 36mm.

The device started to irritate some exposed bone in my lower mandible that had suffered osteoradionecrosis, and I had to curtail the use of the device until the irritation abated (about 2 months...)

Unfortunately, in my case, the 2 month lay-off resulted in the loss of the gain I had achieved which was most disappointing.

Although there are conflicting reports out there, I believe a Therabite user will have to continue using the device indefinitely in order to retain any improvement in jaw opening. In other words, once you start you will have to continue forever.

This has been my experience, but it is by no means conclusive. I wish you every success with the Therabite system, and hope that any gain you achieve is permanent.

I still use my device on and off, and realize I will need it for the balance of my days on the planet, otherwise I would offer it to another good home.

All the best,
JT2


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
Joined: Apr 2011
Posts: 2
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Why do you say that it is so darn expensive? Some one sell it for $300 on Amazon. Sears sell it for $399. Atos (manufacturer) said
after Medicare and my secondary insurance my cost would be $62.

Shirish

Joined: Jul 2007
Posts: 939
"Above & Beyond" Member (500+ posts)
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Joined: Jul 2007
Posts: 939
Uh...not many people here are eligible for Medicare and many insurance companies will not cover it at all. Consider yourself lucky that you have those coverages.

And with reference to the price...many of us think that $300-400 is a lot of money.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
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Posts: 10,507
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I think $300 is alot of money. Even an unexpected bill for $62 in the wrong month can be alot for me. In my previous life, those amounts werent significant to me but now they are.

If anyone is able to help out another member with a piece of durable medical equipment that they no longer use it could make a big difference in that person's life!


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: Apr 2011
Posts: 2
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Posts: 2
Sorry I did not want to ruffle feathers but compare to what I had to pay in thousands to Hospital, Doctors and Dentist that was not covered by insurance in past 4 years this cost to me was fair.

Joined: Jan 2011
Posts: 123
Senior Member (100+ posts)
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Posts: 123
Ken had one of these and if there is anyone who needs one I would be happy to clean it and send it out.


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
Joined: Jul 2007
Posts: 939
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Posts: 939
Thanks Jill...someone will be thankful for your offer.

Special hugs to you and your baby girl today...I can't possibly know how sad you are.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Jan 2011
Posts: 123
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Jan 2011
Posts: 123
I am sending Ken's out this week to someone. So glad we could pay it forward!


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
Joined: Jul 2007
Posts: 939
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2007
Posts: 939
Thank you ...thank you. Hugs, Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Dec 2010
Posts: 5,264
Likes: 4
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Patient Advocate (old timer, 2000 posts)
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Hugs that sooo amazingly generous of you!


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
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