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| | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | OK - here is where I am: The team of doctors have tried to dilate my esophagus using the through the mouth and peg opening at the same time = failure, a month later one of those docs then went through my mouth with a pediatric scope and made good progress until he hit a tissue barrier. They want to try again. The first failure was related to fibrosis so the opening of my mouth was to small.
Do any of you have any ideas on how to get my mouth open wider or hospitals that are well equipped to handle a case like mine. My docs are not bad but I am their first failure. I have an appointment with them mid day next Monday the 9th. I am approaching two years of not being able to swallow my own spit and my patience is wearing thin. Wish me luck.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | I have great result with the Therabite device. It has been discussed a lot here on OCF but you have to use a typo or you will not get any results. type in therabyte (you don't need the bold) in the search box on the right and you can see all the threads and discussion, It really helped me open my mouth from 12 cm to 27 cm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Another way is with tongue depressors. Start with several staced up and put them on each side of you mouth. Gradually insert another stick on each side til it starts to feel tight. Then hold it for 30 seconds. Do this 3x per day and within a week you will be surprised at the improvement.
ChristineSCC 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  | | | | | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | Thanks Guys - I am meeting with my ENT and Dentist today. I forwarded a link to the ENT regarding the therabite. It looks very good to me. I am scared of the tongue depressors. The wood edge has caused me no small amount of discomfort in the past. Thanks for the suggestions. My wife even found information on accupuncture helping. I would not have guessed but I am willing to try. I'll let you guys know what the plan is after the appointment. Thanks again for the kind suggestions and for being there.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | My ENT took ill so the appointment is next week. There is a good chance they will remove the plates and cables holding my teeth in socket. Wish me luck. I'll report back after the visit.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
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