| Joined: Jan 2013 Posts: 23 Member | OP Member Joined: Jan 2013 Posts: 23 | Hello all, I have not posted in a while, but I continue to read the information and appreciate everyone's comments and input. Question...I am surviving my cancer (next Pet Scan is in July), but continue to struggle with Radiation side effects. I have severe Trismus and am using a device called Dynasplint to force open mouth. I have also had two infections, one required surgery and a port to drain the infection. The port caused good tissue on my good jaw bone to die, so now I have an exposed good jaw bone. My doctors have me starting Hyperberic treatments tomorrow. Has anyone else had this problem and can give me some advice or hope that this will work? Thanks in advance!
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Not really, yet! I did 30 HBO treatments for a tooth infection, necrosis. I will need additional HBO when I have my teeth removed, which is not scheduled yet. HBO, after the first day is ok, when you get used to after being locked in the chamber for an hour or two. The dynasplint is similar to the therabyte, I did old school, with the wooden tongue depressors, but that got old. Studies show better outcome with these devises, and when used the first months after treatment. I have to start again, if you really can, since I can only open my mouth one finger thickness. Good luck with everything.
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: Jan 2013 Posts: 23 Member | OP Member Joined: Jan 2013 Posts: 23 | Thanks Paul. With my Trismus, I am also only able to get one finger in the mouth. I used the woodsplints for several months and have just had the Dynasplint about 2 weeks--that was a long fight with the insurance company.
On the Trismus, have you been at your limited opening for awhile? I really do not like eating in-front of non family members, as it is hard to get the food thru such a small opening. Do you know if Trismus improves? I am hoping my dynasplint helps, too early to tell. I have my appetite, but struggle with food intake.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I eat like a mouse now or maybe a pig close to the plate lol. Kind of have the same though about eating outside. I was going to ask about insurance. Did you have to appeal or was it just considered medically necessary after a telephone call. I have Medicare now, but have secondary supplement to cover other charges, but Medicare has to approve first. I want to get one, and would motivate me to use, and will see my therapist about a prescription for it. What I think about is the limited mouth opening, which have different grades, and ifI need surgery, I wonder how they will get in, need a Trach, jaw split, anyway, that's down the line.
Last edited by PaulB; 06-26-2013 09:39 AM.
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: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Yes, I have recently gone thru having an exposed jawbone and doing HBO. Honestly its no big deal at all. Its just very time consuming. Im not one to sit around doing nothing, with doing HBO, its a forced rest period so I was pretty antsy. The 2 hours in the chamber I watched TV and slept when I could relax enough. I kept thinking of the million things I had to do instead of wasting 3 hours a day on HBO. Its about 2 hours in the tank and then you have to get checked out before and after plus changing clothes and transportation time too.
The oral surgeon who removed the exposed jawbone did a good job. He easily removed just a few small pieces which were the ones that poked thru my gums. I didnt want to get knocked out for this so he did it with just a little Novocaine. It took him at the most 5 minutes for the whole procedure.
You may need tubes in your ears to do the dives. Thats no big deal either, it can even be sometimes done right in the doctors office.
About trismus.... it is what it is. Even with using the appliance, there really isnt much that can be done about it. I have it also and have tried all kinds of things unsuccessfully. Its just one of those things that go along with OC and all the brutal treatments and after effects we have to adapt to.
Ive done alot of HBO's so please feel free to ask any questions. I will try to guide you thru. 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: Jan 2013 Posts: 23 Member | OP Member Joined: Jan 2013 Posts: 23 | Paul,
I had to fight for 5 months with the insurance to get the Dynasplint. I wrote 3 letters and it finally went to an emergeny appeal. The insurance is renting the device, for 5 months. If they rent it for 7 months it is paid for in full. I hated the wooden sticks. Trismus is bad, and mine would get worse almost overnight, stay the same, and then get worse a few weeks later. My goal is to do 90 minutes a day on the dynasplint, so far I am up to 60 minutes. It hurts, almost as much as the sticks, but seems more sanatary and is helping (so far) at least some.
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 Member | OP Member Joined: Jan 2013 Posts: 23 | Christine, What have you not been thru? When I think of OC, I think of you and all the stuff you have gone thru. I do not know you, but I have a hell of a lot of respect for you and your continued optimism. I know all cancers are horrible, and I am sure I am bias, but OC really is hard to deal with. It changes lifestyles, eating, talking, the list goes on and on. I am not starting my Hyperberic tomorrow as the insurance company is slow to give final approval. Hopefully Friday! We have to fight and demand every step of the way with our insurance company. Thanks for all you do.
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: 7 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: 7 | Take a bottle of water with you for HBO. You may need to take sips to help get your ears to "pop". If you feel any discomfort in your ears, speak up immediately. You do not want to rupture an eardrum. The first couple dives they should take you"down" slowly to make certain you are having no trouble with your ears adjusting to the pressure.
Yes, Ive gone thru alot but Im really doing pretty good. At least I would like to think so anyway.
Good luck with your dives! 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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | You can also dry swallow, and your ears will equalize the pressure. Another is to hold your nose closed with two fingers and blow, and will equalize the pressure too. I can do it by opening my mouth, moving my jaw.
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
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