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Joined: Jun 2013
Posts: 262
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Joined: Jun 2013
Posts: 262
My insurer won't cover a Therabite device to treat trismus. Their coverage policy states the device is experimental and not proven LIKE TONGUE DEPRESSORS.

Has anyone successfully appealed a Therabite denial, or know of a less costly way to buy one out-of-pocket?

I'm down to 23mm and narrowing, and haven't even begun radiation. I need to get ahead of this, now. I'm using my daughter's old toddler spoons and can no longer even eat a banana the usual way.

Thanks for any help!


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
Joined: Jan 2013
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Posts: 23
%#$! is a correct statement. Remember that insurance companies are for profit. I fought with my insurance company for six months to get my Dynasplint. After several letters and many phone calls, they are covering the Dynasplint for 3 months. This means I have to again start the process all over to extend the 3 months. Good luck. The tongue blades are very temporary. Even though I now have Radiation Fibrosis and my mouth opening is still horrible, I do credit the Dynasplint with keeping me at least able to eat. The only advice I can give you is to bug the heck out the insurance companies or be willing to pay for the device yourself.


SCC 9/2012 right upper right maxilla
Surgery 9/27/2012 to remove portion of right maxilla
DX-after surgery cancer cells in margin
RAD-33 TX ended 12/05/12
2/13-current-Severe Trismus and Radation Fibrosis
6/13-clear PET
6/13-Infection in radiation area of mouth, with surgery to drain infection
8/13-ended 40 HBOT treatments
11/13-Clear PET
3/14-Botox injections for severe Trismus
5/14-Clear PET/ 11/14-clear PET
Male age 53, non smoker, non drinker
Joined: Jan 2013
Posts: 23
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one more thought. In my opinion...if oral cancer was more politically correct, the insurance companies would have to pay for devices like dynasplint. We really need some help making insurance companies know how important for quality of life these devices are.


SCC 9/2012 right upper right maxilla
Surgery 9/27/2012 to remove portion of right maxilla
DX-after surgery cancer cells in margin
RAD-33 TX ended 12/05/12
2/13-current-Severe Trismus and Radation Fibrosis
6/13-clear PET
6/13-Infection in radiation area of mouth, with surgery to drain infection
8/13-ended 40 HBOT treatments
11/13-Clear PET
3/14-Botox injections for severe Trismus
5/14-Clear PET/ 11/14-clear PET
Male age 53, non smoker, non drinker
Joined: Jun 2013
Posts: 262
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Posts: 262
Eric, what did you argue in your appeal? & I take your point about the need for advocacy for insurance coverage.

Thanks,

Mama


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
Joined: Aug 2012
Posts: 214
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Gold Member (200+ posts)
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Joined: Aug 2012
Posts: 214
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Did you get a doc's scipt. My insurance covered it but I still had to pay $165. The thing works, but boy does your mouth hurt while stretching. Tongue sticks are just stupid. Did you look at buy online, Amazon had them. Also I saw one on ebay once. I can't sell mine yet, I still use it ever now and then to make sure its not getting worse. I was prepaid to buy it on my own. At $165 out of pocket I feel like I did.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Joined: Jun 2013
Posts: 262
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Hi Hockeydad, I do have a doctor's script. Amazon and ebay both around $535...I called the manufacturer and can buy one direct for about $435. My insurance has been pretty great otherwise but this is definitely a blind spot....


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
Joined: Apr 2013
Posts: 92
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Joined: Apr 2013
Posts: 92
Maybe someone on the forum has one for sale? It would be nice if we could help each other that way. I haven't had to use one, not sure if I will need it as I can get 3 fingers in my mouth and haven't done any exercises but if I had one laying around I would gladly ship it to ya Mama.


AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
Joined: Jan 2013
Posts: 23
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Posts: 23
Two different doctors had consultations with peer doctors at insurance company. We had in our appeal measurements on mouth closing from 35mm to 12mm at the time. We also kept calling and calling and calling.

I am very happy that other Cancers have laws to pay for reconstruction or other needs. I am becoming very vocal and frustrated that Oral Cancer is the Lonely step child.


SCC 9/2012 right upper right maxilla
Surgery 9/27/2012 to remove portion of right maxilla
DX-after surgery cancer cells in margin
RAD-33 TX ended 12/05/12
2/13-current-Severe Trismus and Radation Fibrosis
6/13-clear PET
6/13-Infection in radiation area of mouth, with surgery to drain infection
8/13-ended 40 HBOT treatments
11/13-Clear PET
3/14-Botox injections for severe Trismus
5/14-Clear PET/ 11/14-clear PET
Male age 53, non smoker, non drinker
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
I hear ya!

Sorry to hear you had such lousy results with your insurance company!


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

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