Extreme pain in right jaw, teeth and neck

[Decktime]

A week ago my husband began to feel a numbness along his right jaw line from his earlobe to his chin. The numbness turned into pain and the right lower teeth became painful as well. We went to dentist for x-rays which showed nothing. We then went to an oral surgeon for more x-rays which showed nothing. Yesterday we went to the hospital because the pain was so unbearable. EKG and CT scan are normal. We will be speaking with oncologist but I'm wondering if this could be an unusual SE from the darolutamide.

He has been taking gabapentin 900mg/day. He still feels the pain even with that.

[TMcgee]

If he is taking Xgeva injections that may be the cause. Osteonecrosis of the jaw (ONJ) is a SE of Xgeva

[Decktime in reply to TMcgee]

Thank you for your reply. I should have added (it's in the bio) Tim's treatment includes Eligard injections and daily oral Darolutamide.

[TMcgee in reply to Decktime]

FYI: Tim’s bio indicates Firmagon ADT and doesn’t mention the Gabapentin. Given the purpose of your post, you may want to update his therapies.

Best to you and Tim. I hope you get answers.

[Tall_Allen]

It sounds like trigeminal neuralgia. If so, there are interventions they can do - talk to a neurologist.

[Decktime in reply to Tall_Allen]

Thank you.

[Jac_J in reply to Tall_Allen]

Thanks T.A. I am currently recovering after being diagnosed with Shingles on my face 3 weeks ago. My lower left jaw and teeth are totally numb but can also be painful. I lost hearing in my left ear for a week but it has returned. The middle ear and ear canal are very painful. Half my face is also numb from chin to upper cheek bone. Even though its numb, its also very sensitive and and painful. Im in a lot of constant pain (night and day) and went to emergency because of the ear pain 3 weeks ago. Oxycodone, Prebalin and Ibuprofen/Paracetamol do almost nothing.

Trigeminal neuralgia may be something to investigate. Perhaps the singles are causing the neuralgia. Time may tell. The pain, burning sensation, itching and numbness all make this the most debilitated I have felt. Ever.

You teach me something almost every day.

Thanks

[j-o-h-n in reply to Jac_J]

One thing you didn't learn was to get your shingles vaccine...... (50 and over)...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/12/2023 3:02 PM DST

[j-o-h-n in reply to j-o-h-n]

Oops, you're an Aussie..... (that's in years)....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/12/2023 3:05 PM DST

[Anesthesia966 in reply to Tall_Allen]

Agree with Trigeminal neuralgia

[MJCA]

Is your husband taking Xgeva? A known side effect are issues with the jawbone.

[Decktime in reply to MJCA]

thank you for your reply. he is not taking Xgeva.

[Hidden]

I tend to lean with TA, nerve issue. Not Osteonecrosis, that would have shown up in x-rays.

[JAK2243 in reply to Hidden]

Simple solution for TJM, Try Cabamezapin. If it is TJM, the Cabamezapin (Tegratol) will relieve the pain.

[Birdwood]

I had ONJ about 4 years ago, but it did not have your symptoms. Just sensitive when chewing and a puss pimple near the affected tooth.

[85745]

First I cannot diagnose your situation, but I had same pain from ear into jaw. for me it was gout uric acid build up. Everytime I tried cod liver oil or new zealand clam oil supps within 72hrs it starts. I never knew gout in the jaw is common . Unfortunatel as well as the prescribed meds we take can subject us to a trick bag of unwanted side effects not always listed

[Decktime in reply to 85745]

Thank you for sharing this! I will test his uric acid levels with some test strips I have. I never would have considered this. We are having to explore all possibilities. And sadly yes, the meds often are not all that helpful and add, as you say, a trick bag of unwanted SEs.

[Ian99]

In case it can be useful, I can second TA’s assessment. Following RT to head and neck 10 years ago, half my face became increasingly numb below the jawbone. The cause was a tooth infection provoked by RT and impacting on the trigeminal nerves and jawbone. After removal of the tooth and analysis of the infection I was prescribed antiobiotics and a special medication to rebuild a hole in the jawbone. The pain and numbness went away and has to this day not returned. Best wishes.

[dentaltwin]

While this sounds more like a trigeminal neuralgia than it does osteonecrosis, without skin involvement eventually it is not typical. Most frequently shingles with trigeminal neuralgia will affect one branch of the trigeminal nerve, but it's possible to affect more than one branch, which sounds like the case here.

Less likely could be metastasis somewhere along the path of the trigeminal nerve, so this has to be considered.

Steve Bornfeld, DDS

[Decktime in reply to dentaltwin]

Thank you. This is really interesting. You are the third person to suggest this could possibly be an unusual case of shingles. But wouldn't there be a rash outbreak eventually? This is the 8th day with pain.

[dentaltwin in reply to Decktime]

The literature it is possible to get a neuralgia without a rash, but if there's pain without a skin rash it is often undiagnosed.

[j-o-h-n in reply to dentaltwin]

Steve you're a mensch.......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/12/2023 3:10 PM DST

[carbide]

Did he take /get (injection) Xgeva? Or another bone medication. If so, he may be developing osteoneucrosis. Best Luck.