Jaw pain anybody ?

[kitcat49]

My haematologist doesn't seem to think my jaw pain has anything to do with my nodes as they are not too remarkable. Also bit of shooting pain in temple area and now cheek bones. It doesn't hurt to chew or yawn etc but pressure from pillow bothers. Any comments ?

[Newdawn Administrator]

I think you should ask either your GP/haematologist or even dentist to refer you to a maxillofacial surgeon at your local hospital kitcat to have it investigated. My dentist sent me as a precaution when I reported a jaw pain (really only because Sjogrens Syndrome was suspected). Fortunately it was a transitory thing and not related to the small node I have in the parotid gland area. CLL can infiltrate this area so it's worth a specialist taking a look because it can simply be a jaw alignment problem, tooth grinding problem etc. Just because your haematologist doesn't know, doesn't mean you have to put up with it!

Hope you get sorted soon. Regards,

Newdawn

[kitcat49 in reply to Newdawn]

Thanks,Newdawn,My dentist did a 'pam' X-ray and did a thorough exam for anything untoward and none of the usual guesses seemed apparent. HE did not seem concerned about the bad taste and the sensation that a noctious gas exuded from an old root canaled tooth that he replaced a bridge on to,sorry if I worded that oddly. Most of my discomfort however is on the the other side(the left,which one thinks ' heart? ' Ah well, I guess the best is my GP , hope he doesn't shrugg it off.

[MsCLL CLL CURE Hero in reply to kitcat49]

How long ago was the bridge replaced. Have him check your bite. Try a night guard. You might be grinding or clenching your teeth in your sleep. Your teeth will show wear facets. It's called Bruxism.

I have this problem as do many. I wear a night guard at night.

Best of luck.

[Ernest2]

Is the pain on both sides ?

Not in the temporal area, but I've had jaw pain mainly on one side from TMJ (Temporomandibular Joint).

Recommend seeing a dentist, especially if they have a TMJ specialist or can refer you.

There are different sets of exercises available to treat TMJ, some of the easiest to do the OUH ones at:

ouh.nhs.uk/patient-guide/le...

Other than that suggest try a good physio, in addition to your GP if they are stuck.

I also get strange pains in the face from bad/stationary posture, when I sit at a PC all day (that has taken me many years and specialists to figure out, all of whom were stuck. My physio got it straight away).

Is your haematologist a CLL specialist ?

Best regards,

Ernest

[Thinkimjob]

Trigeminal neuralgia? Is it really severe?

[kitcat49 in reply to Thinkimjob]

Yes,I was searching the web and came across TN (if the Drs can't give you an answer you go looking ,right?) It sure fits the bill. It isn't serious,anyone who has lived with fibromyalgia as long as I have gets used to pain. I just wonder if the ronchy taste I get from old root canal could have triggered it. Had root canal xrayed twice,no apparent infection.The tooth involved hangs on to a rather long and expensive bridge,replaced about two yrs ago,(the nasty taste started a few mos after)so I'm not crazy about investing anymore $$$$ there or losing all those teeth...anyway thx for your reply...Cat

[Thinkimjob in reply to kitcat49]

Trigeminal neuralgia does eventually clear up, though it can take very many weeks. Your GP, if he/she thought this was a possibility, might suggest options such as , strangely, an anti epileptic tablet for a few weeks. Which often does the trick.

[MsLockYourPosts Passed Volunteer]

I spent two years going the rounds of top specialists at Yale New Haven (10 of them who kept passing me around) back in the 70s (Wow! last century!) because of what became severe nerve spasms in my face on the left side and advanced to head to toe left side spasms. I got a collection of opinions - no two the same - before I flew home to California to my incredible dentist, a professor of dentistry at USC who went to UCLA (the big cross town sports rival) to take a class to figure out what was going on. TMJ syndrome. In retrospect, the one thing I knew was that when I had a cold the pain stopped. It was because I couldn't grind my teeth at night and still breathe.

I would start by finding a dentist very familiar with TMJ syndrome (tempromandibular joint syndrome). Fixes can include braces, a night guard, grinding contact points or some combination of these. For a while, when TMJ syndrome was the in thing in Beverly Hills, surgery to change the lower jaw was "in". I have not heard anything about the surgery option for years. I know that whenever I have dental work done my dentist is careful about checking the bite, and I wear a night guard religiously.

[shoshanaz]

It sounds like TMJ. I have also had a problem with my jaw joint and have wondered if CLL was playing a role. In my case it is not pain so much as the alignment has shifted, so I can't chew. I also have osteoarthritis, which is more likely the culprit. I'd agree with Newdawn that checking it out with a maxillofacial surgeon is a good choice for a next step.

[Hidden]

I don't know what it is either, but I have the same thing. I've been on Imbruvica for CLL for about 4 months now. Will ask my oncologist about it.

[windmiller99]

You said you had an old root canalled tooth that was producing a bad taste. I had stage iv cll at 44 yrs of age when diagnosed. I had CT scans, bone scan etc.. which showed signs of something in my jaw (infection) upwards towards my temple and into my bloodstream. When I finished my treatment I went to a holoistic dentist and had my 'old' root canalled tooth removed and all of the infection that surrounded it. My oncologist said at first the tooth was not a concern and was not related. But 3 days after I had the tooth removed, the pain went away, sinus cleared up, and all my blood counts changed to the better. It's been 5 months now and my jaw, mouth and sinus' feel great. I would ask your dentist to xray again and check for infection that has been trapped by your root canalled tooth.

[kitcat49 in reply to windmiller99]

Yes, I'm really afraid it might be the case with mine,even though the discomfort started on other side(jaw). Sure don't want to spend anymore $$$ in that area. Thx for reply..Cat

[SandiC]

How timely.... late last night I started with this pain in my left jaw (tmj) area. Can hardly open my mouth. Doesn't hurt much unless I try to open my mouth. It definitely looks swollen on that side compared to the other. Been on acalabrutinib for a month and have been doing well.