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#148945 - 05/01/12 08:40 PM can't open mouth to eat and exposed jaw bone
kathy17 Offline
Member

Registered: 05/01/12
Posts: 5
Loc: pa
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?

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#148947 - 05/01/12 09:39 PM Re: can't open mouth to eat and exposed jaw bone [Re: kathy17]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8481
Loc: PA
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!!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148953 - 05/01/12 11:02 PM Re: can't open mouth to eat and exposed jaw bone [Re: ChristineB]
kathy17 Offline
Member

Registered: 05/01/12
Posts: 5
Loc: pa
what is a ENT? Can they tell if the jaw bone is dead

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#148955 - 05/02/12 12:15 AM Re: can't open mouth to eat and exposed jaw bone [Re: ChristineB]
kathy17 Offline
Member

Registered: 05/01/12
Posts: 5
Loc: pa
ok i know what ENT means. I just need to know about my jaw bone.

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#148959 - 05/02/12 05:24 AM Re: can't open mouth to eat and exposed jaw bone [Re: kathy17]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Yes he'll be able to tell you smile 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.

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#148974 - 05/02/12 06:47 PM Re: can't open mouth to eat and exposed jaw bone [Re: EricS]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4963
Loc: Toronto canada
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

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#148990 - 05/02/12 10:48 PM Re: can't open mouth to eat and exposed jaw bone [Re: Cheryld]
kathy17 Offline
Member

Registered: 05/01/12
Posts: 5
Loc: pa
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.


Edited by ChristineB (05/03/12 01:55 AM)
Edit Reason: removed phone number

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#148996 - 05/03/12 12:00 AM Re: can't open mouth to eat and exposed jaw bone [Re: kathy17]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4963
Loc: Toronto canada
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

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#149002 - 05/03/12 02:02 AM Re: can't open mouth to eat and exposed jaw bone [Re: Cheryld]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8481
Loc: PA
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.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#149043 - 05/04/12 01:43 AM Re: can't open mouth to eat and exposed jaw bone [Re: kathy17]
RogerC Offline
"OCF Canuck"
Contributing Member (25+ posts)

Registered: 12/28/11
Posts: 25
Loc: Hamilton, Ontario Canada
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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