This is open to everyone...your input would be appreciated.

For the last week or so I have had a pain in my lower right jaw. If I hadn't had all my molars removed I would say it hurts like a tootache. It only hurts when I try and open my mouth. (the motion of opening)And only on that one side. (it has gotten worse)If I press down where a tooth used to be it hurts. Does not hurt from the outside (hope that makes sense)

Went to the dentist yesterday and he did a panorama and couldn't find anything. Suggested maybe a CT Scan if I was concerned, but really thinks it's associated with my trismus. I can't see how all of a sudden it would be; and only on one side. He has me with no partials for 48 hours, soft foods, then moist heat.

No sure next step?? Next doctor? I have scans for chest, abdoman, and pelvis next week. Should I try and talk them into a head scan?

Any ideas about what could be going on? How do you pull a jaw muscle?

Thanks for any ideas guys, this is the pitts, just when my eating was getting pretty good.

Dinah

I have a similar pain that comes and goes. As a survivor it has worried me. I think about all the bad things it can be, but scans don't show anything there. A Panorex film would show if there was a radiation induced osteosarcoma, which looks like soap bubbles on the film. Make sure the dentist knows what he is looking at. It isn't a common thing to see. So the worst possible thing may be eliminated from your differential diagnosis. Ditto cancerous involvement of the bone in that area would also show up as a dark radiolucency on the film. A CT of that area would disclose any soft tissue related mass, and just to be safe you could eliminate that possibility with the scan

Now for my own conclusion after chasing this for a year. Trismus is an issue. Radiation has formed scar tissue in the muscles of your face and which control your jaw movements. On the facial side this is primarily the masseter muscle, on the inside of the mandible, this is the internal and external pterigoids. My pain occurs (to me) on the mandible itself, but in reality it is the insertion /attachment points of these muscles which are very sore. They can become that way from a lot of chewing, a great deal of talking (which I am prone to in spite of my dry mouth) and in particular from clenching my teeth which I do unconsciously. I have bruxed/ground my teeth all my life in sports, and when I am nervous (too much of the time now) and I even do it during my sleep. I wake up in the morning with a really sore mandible, and I believe it is because of this.

Muscle fatigue and overwork brought on by tension will cause this kind of pain. I offer this as food for thought and not necessarily a diagnosis that applies to you.

Thanks so much, Brian. It's nice to know I'm not the only one that immediately wonders what something could be if it's in the mouth. These pesky little (have one right now) bumps on the tongue are irritatingly painful enough..I always wait to see if they go away before I panic.

I'll ask about them adding my head to the scans, for piece of mind.

What do you do for the pain? I am trying to eat jello right now off a small teaspoon and can't get my mouth open enough. (without some major hurting)

Do you rest it for a while? Go to liquids? I don't take much in the way of pain pills, I'd hate to do that just for this.

Thanks again,
Dinah

Before I was diagnosed with throat cancer, I had pain in the gum area of a molar. I went from dentist to periodontist to endodontist, who, upon reopening the tooth to redo a root canal, said the tooth was fine. Once I was diagnosed I assumed that the pain was displaced pain from the base of tongue tumor. The dentist at M.D. Anderson pulled the molar before treatment began. Now, 5 months after radiation treatments ended, I still get pain in the gum area where the tooth used to be! I know that the tumor is gone and I just cannot figure out why I feel pain there.
Also, I get pain in my arm sockets and upper arms, especially the right one. Sometimes if I reach out for something, it hurts. The doctors haven't a clue what I am talking about. But it seems too coincidental to me. If the radiation could go low enough in my chest to cause a block in my esopohagus, it stands to reason to me that it could go down my neck enough to affect my shoulders and upper arms.
Has anyone else had such pain?

Danny G.

The trismus is tough. While this comment is of no benefit to you now, I can not emphasize enough how important it is to do the stretching exercises DURING the treatments, it makes all the difference later. You can still increase your range of motion and the amount that you can open using daily stretching techniques. I used tongue depressors stacked up, and each day tried to get one more in the pile. The Therabite device gets great reviews from everyone that I have heard that has used it. The scar tissue becomes harder to deal with and reverse as time passes.... severely limiting peoples ability to open widely enough to eat and speak properly. Regarding the pain, I am the wrong one to ask

Had the scans done Wednesday - they did include head with the other scans, because my doctor didn't want to wait.

After my original therapy this time a year ago I was able to put two fingers in my mouth. With this sudden onset of pain I am only able to insert one finger. I can't even wear my partials.

My doctor told me he wanted an ENT to read the scans - that way someone more familiar with the area would know what to look for. He called my ENT who informed him (rudely I'm told by the nurse) that he didn't need to see me - it sounded like necrosis and I should go to an oral surgeon. Then the oral surgeon says they don't take my insurance (it also doesn't pay dental)...so now this really great doctor has his nurse on the phone calling oral surgeons for me.

I am impressed by someone that knows and acknowledges his limitations. And still tries to do what's best for the patient.

So we'll see what happens, I have been doing searches on necrosis and I find references and description, but I don't quite understand if there is a treatment for it, or am I going to always have this pain when I open my mouth to eat.

Any experiences out there?
Take care,
Dinah

Hi Dinah:
Experienced somewhat the same thing but to the severity you are. After radiation experienced what felt like a toothache in my lower jaw, both sides. The RAD doc said was more than likely a side effect from the radiation. Gave me some exercises to do. Every now and them, but less frequently, will flare up. I did have a CT scan of my head and neck. Showed nothing out of the ordinary so for that reason it was worth having it done. I take 2 asprins and call the doctor to let him know.

Mike D.

Diagnosed 06/2002, w/Laryngeal cancer, 1st stage

I'm not comfortable with where this is going. Necrosis is the death of tissue. If this is happening, the question is why? I also do not care for the fact that this doctor is looking for an ENT to read the scans....the facility that did the scans must have a radiologist on staff that is responsible for interpreting what is on them, and writing a report to the doctor that ordered them. Where is this guys report and what did it say? Nobody is better at interpreting scans than a radiologist. Hell this is all they do all day, and it is their area of expertise. Get an ENT to read it? You've got to be kidding! While they may be able to, there is a link missing here the radiologist

As usual you are right on track - they were waiting for and calling the radiologist for his report to fax to the ENT - and I would take the scans. But, low and behold they didn't do the enhancement on the head scan. He only hooked me up to the IV, for the rest. Duh!!! And I didn't even think about it. The radiologist wants the enhancement first, before he reads. And I am assuming that's why they weren't clear to my doc)So - I am back Monday for a new scan. (the triage nurses are going to start my IV this time, he had to try 3 times, which immediately got infected since my white counts are low now)
I think I may cost this guy his job, since last time he messed up and couldn't find the vain and the scans didn't come out, and I had to go back.
You know I'm a nice person (most times) but something like this no; there are a lot of people in worse shape than me and they shouldn't have to go through the screwed up scans.
So, anyway hopefully we'll have a good scan Monday and ALL the docs can read it.
Oh, whoa is me - till then I guess I'm stuck with ice cream and malts....

Dinah

Hi Dinah:
I am not sure who is at fault with all the screw ups with test but it sounds like somebody need to lose something. They are supposedly professionals with a job and purpose, if we did our job as poorly you know what would happen. Besides Brian is right on as far as the CT Scans and X-rays being read by radiologists. These doctors only read x-rays and do nothing else. Hope everything goes well with your test this week. Please let us know. Too bad my wife isn't in San Antonio, if no one else can get an IV they come get her, to date she hasn't missed. She did mine for all my back surgeries and I didn't even know she stuck me. Maybe we'll put her on loan just for your procedures???

Mike D.

Diagnosed 06/2002, w/Laryngeal cancer, 1st stage

Hey Mike,

The Alamo City would welcome your wife with open arms (literally). You know Mike is giving me my Nuetrapen shots at home and he does a better job than a couple of the nurses...I think. That added touch of love must have something to do with it.

Hopefully the triage nurses will get me started in the morning and everything will run smooth.

Take care,
Dinah

Hi Dinah:
Was just wondering if you had your other scna(s) and how they went?? Talked with my wife and she is ready to go anywhere except for home right now, we just had another 6" of snow and ice this past week end.

Mike D.

Diagnosed 06/2002, w/Laryngeal cancer

For you folks with Trismus problems (my problems were no where near what you guys have), I was sent to a marvelous physical therapist near Princton, N.J. (specializes in head and neck problems) who did intra and extra oral massage on my face and neck after I had the both neck dissections. He also was/is running a research project on trismus out of Hospital at U of Pa in Phila. If any of you are in this area, I will give you his name. If you can't find a PT in your area who does this, I am also willing to contact him to see if he knows anyone in your area.

As for IV's, I have my own horror stories. The guys who ran the Pet scans and CT scans were fine. But the ones in OR couldn't find a vein if their life depended on it. As I'm lying on the table with this idiot fishing for a vein, I am staring up at the ceiling of the operating room which looked like someone had just completed a massive abdominal surgery and had been winging the organs off the ceiling. Looked like the site of mass murder. When I asked about it, the idiot told me that the walls are washed and most people don't look at the ceiling. I replied that most people don't need to lie there for ten minutes while someone tries to run an IV. Needless to say the ceiling was pointed out to my surgeon who had a conniption fit and had it promptly cleaned after my surgery. He still laughs about it.