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#74453 05-15-2008 09:24 PM
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Tammy63 Offline OP
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I am 7 months out of surgery 5 months out of Radiation and 4 months out of chemo. I am having a lot of jaw pain. The numbness on the right side where they did the surgery is going away. This is also where they did the radiation on my jaw bones. I feel like someone has hit me with a 2 by 4 across my lower jaw. The doctor wants me to only take Advil or Tylenol and tells me to suck it up.He wants me off of Viodine because he says that a year from now I will be doing better than if I continued to take it for pain. I was only using 1 table spoon morning and evening. I have try the spa and also cold cloth but with no luck. Has anyone else had this situation or any helpful suggestions.


Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
Tammy63 #74491 05-16-2008 04:15 PM
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The numbness took almost a year for me to go away after surgery. Its been almost a year since radiation and I still have jaw pain. Not all the time now but my jaws just get tired during the day. I still take vicadon once in a while. Its seems to be worse during that time of month. but I would insist on pain pills once in a while. I try to take ibprofrin to help with pain but once in a while I need the pain pills. I would try to put heat on it too because it helps to relax it.
But believe me there are still those days that I just want to cry all day.

angie88 #74513 05-17-2008 12:47 AM
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Tammy63 Offline OP
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Thank for the information. We all know we are not alone. I am also swollon under my chin and the doctor says that probable will not go away. I loose this little extra weight and then end up with a turkey neck just not fair.


Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
Tammy63 #74522 05-17-2008 03:39 AM
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The "swollen under my chin" may be what we call The Turkey Chin and nothing seems to help it go away. I am almost 2 years post Tx and I still have mine and I'm not overweight, never was, and I exercise like an idiot.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Tammy63 #75059 05-30-2008 09:36 PM
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Do you see an oral specialist? My husband had a piece of "loose" bone in his jaw which was causing infection. Long story short--when it came out on its own, after 18 mo. of pain, serious pain meds (addicted at one point), and many rounds of antibiotics, he was fine! Note: The doctors never saw the fragment but treated him for the pain and infection.

mawalton #75088 05-31-2008 12:01 PM
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i have had the jaw pain for months now my dr gave me naproxen and pain meds seems to help a little I also have turkey neck but very hard lump under the left chin which is bothersome. I keep sayin i have some type of infection i am glad i read this will talk to dr about the bone as i had all my bottom teeth removed.


scc stageIV dec 07, glossectomy, radical neck dissection 1/08 ,IMRI 33 treatments ,5/08 mestasis in lungs, port just put in start chemo 6/08
joettesjourney #75091 05-31-2008 01:06 PM
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Tammy:

You are not alone. Radiation sure does quite a number on your jaw muscles. My jaw hurts everyday. MY ENT gives me liquid hydrocodone for it. Next week Im going to my oral surgeon to see if there is anything that can be done for it.



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
joettesjourney #75092 05-31-2008 01:08 PM
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It is very common for loose bone pieces called "spicules" to work their way out through the gums anytime after extractions. I have even had a patient have one come out as long as 20 years after an extraction is done.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
wilckdds #75095 05-31-2008 02:56 PM
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Wow Jerry! Thanks for letting me know that was common. I've had it happen once or twice especially after my last round of dental work and it made me nervous. Now that you've explained it's not an abnormal occurence I will rest easier.


Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
Suess57 #75101 05-31-2008 04:10 PM
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Christine, I am curious to hear what you are told. I also have jaw pain everyday though it isn't so much a constant hurt as sudden very painful cramps that make me need to pull against the cramp to keep from practically grinding my teeth against each other (which would be especially bad since my upper and lower teeth are all out out alignment with each other right now). They don't last long usually about a minute or two at the very most but they are very painful and disruptive if I am in the middle of trying to speak to someone or trying to eat.

I also have very bad trismus which I read somewhere here that you said you had as well.

I am a long way out from treatment (3 years) and have used the therabite intermittently but my ENT-surgeon thinks there is too much fibrosis in the muscle at this point for the therabite to be extremely effective. He is recommending a surgery (someone here mentioned the name of it but now I'm forgetting it) where they actually cut the tendon of the muscle that he believes is scarred and causing the trismus and that helps release your jaw. For a while I was thinking this would also help relieve the jaw cramps but my MO at a recent appt. I had said he's not sure at all that that's true because the muscle cramping may not be the same muscle. Since then I have tried to notice which muscle is cramping and, if I'm undertsanding the musculature around the jaw at all correctly I think it is NOT the same muscle. Furthermore I think I use the muscle he wants to cut is the one I use to pull against the cramps--if so, it seems like the surgery could be a bad idea.

Anyway, I am actually looking around for a second opinion on this. Your doctors are not all *that* far away from me I think-certianly no further than going to Boston which I have done for my strictures--unfortunately that hospital does not currently have asurgeon who could do this surgery. If your doctor discusses a similar surgery with you, even as a possibility, maybe you could give me his or her name because that might eb a good person to get a second opinion from.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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