| | Joined: May 2012 Posts: 5 Member | OP  Member
Joined: May 2012 Posts: 5 | I had tonsil cancer surgery back in Nov. 2011 and radation and chemo in Dec.2011 and now i can't open my mouth to eat and i have exposed jaw bone. I have pain 24/7 and on all kinds of meds. What all can i do to where i can be back to normal to where i can be pain free and be able to open mouth to eat? | | | | | 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 | Hi Kathy! Welcome to OCF! Im so sorry you are going thru such a painful time right now. Have you seen your ENT about this? To me it sounds like you have osteoradionecrosis which is extremely painful. Its where the jawbone dies from the radiation treatments. The bone can breakdown and splinter making tiny shard that will stab thru your gumline. Ive had those shards happen to me and it was agony! Mine was from having my teeth removed.
Is it from the pain that you cant open your mouth? Try to take some pain meds and rinse with magic mouthwash to numb your mouth. Then slowly and gently try to stretch open your mouth as wide as possible, hold it for 10 seconds and repeat several times in a row and do several sets of this per day.
i would suggest you get to your ENT right away. You may need to have a mandibulectomy which is where your jaw is removed. Its a big surgery but you can get thru this! You may only need hyperbaric oxygen treatments (HBO) to help heal your jaw. Its really difficult to help over the internet. HBO is no big deal, you go into a glass tube and breathe pressurized oxygen for about 2 hours a day for at least 20 times. Its time consuming but it will help you to heal. You could also need strong antibiotics to help. I did a picc line with IV antibiotics and HBO to heal my jaw and it worked very well.
If you cant eat are yo using a feeding tube? You must get your nutrition or you will not heal. Try adding some high protein to your diet to help heal you faster.
Best wishes!!!!
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: May 2012 Posts: 5 Member | | OP Member
Joined: May 2012 Posts: 5 | what is a ENT? Can they tell if the jaw bone is dead | | | | | Joined: May 2012 Posts: 5 Member | | OP Member
Joined: May 2012 Posts: 5 | ok i know what ENT means. I just need to know about my jaw bone. | | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Yes he'll be able to tell you Treatment would be HBO if thought treatable, mandiblectomy if it's not.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi there... I'm going to leave the mandible information to Christine and Eric as they definitely know what they are talking about as they have both been through it.
The opening of your mouth may have something to do with the damage to you mandible, but it may also be caused by radiation damage. I would suggest physio, and possibly acupuncture to help with it. There are others here who use a therabite, or something home made, but usually radiation damage has to do with shortening and tightening of the muscles and improved blood flow to these areas helps soften the tissue. That's why I suggested acupuncture. I have been doing it for a year now. It really does help and my naturopath also suggested a form of massage to the inside of my mouth that helps stretch the right muscles.
hopefully this helps but definitely have your jaw looked at by an ENT.
good luck
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
| | | | | Joined: May 2012 Posts: 5 Member | | OP Member
Joined: May 2012 Posts: 5 | They said i have a infection and is trying all these different meds. the only thing the meds. done for me is take the swelling down. He never said anything about HBO. I would really like to talk to someone about this can someone please call me? Send me a PM and I can give you my number. Its a at&t cell phone.
Last edited by ChristineB; 05-02-2012 06:55 PM. Reason: removed phone number
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | I can't give you HBO advice, but someone here who's been through it will likely give you a call.... There are quite a few - that sounds like what you are going to need to get rid of the infection. Take care.
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
| | | | | 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 | First try to calm down. I mentioned antibiotics in an earlier post to you. If that does not work then I would think the next step would be HBO.
What doctor did you see? Did you ask about HBO? Sorry its too late for me to call you tonight. I have sent you a PM with my info if you still want to speak to me tomorrow.
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: Dec 2011 Posts: 25 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Dec 2011 Posts: 25 | I'm just curious, is ORN possible 4 months post Tx?
I also read that the incidence is around 3%, true?
Stay positive Kathy, have you had an CT/MRI to determine what is happening in your jaw?
Hopefully, the doc's right and it's just an infection.
FNAB Dx SCC left lymph Sept2/11 (age 43), left tonsillectomy Sept21/11 confirmed primary. T1N2bM0. 35 IMRT both sides Oct17-Dec12/11. Cisplatin week 1,4,7. Non-smoker, non-drinker, p16+.
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