Mouth pain over a year, no help or end in sight

Posted by cfreeman @cfreeman, Jul 19, 2023

I have had mouth pain for over a year. Mostly the tongue. I have seen several dentists, orthodontists, ear, nose & throat specialists. No one can seem to help me so now I contine searching for help and not sure where to turn. I want my life back and not be in constant pain as these issues have taken over my life.

I have taken care of my teeth and mouth my whole life. My dentist back in the 80’s decided to remove 4 molars to make room for my wisdom teeth, to date I have had 1 root canal and a few fillings and one wisdom tooth removed. The material in the crown after years started to cause me issues as I became allergic to the materials and this was replaced, I thought this was the reason for my tongue soreness on that side but wasn. I had an extra cusp on a top molar that jetted off the tooth towards the tongue that was pointy and thought this was another reason for my issue as it was poking my tongue.

Doctors in my area said there were no issues, but this issue has remained, after seeing my doctor and having bloodwork, I went to see the ENT. Bloodwork was normal and ENT stated it was burning mouth syndrome and this was the beginning of this cycle I have been on for over a year. Went to my childhood doctor for more bloodwork and sent me to a different ENT. The ENT felt it was the teeth causing the issue. The next dentist eventually replaced the crown, but a few teeth are still sharp to me, but they state they do not feel anything.

The ENT did an MRI to rule out this as a nerve issue and did a biopsy on my tongue as there was a bump this whole time and was getting bigger. It was a swollen saliva gland, and cancer was ruled out and they pointed back to the teeth as the issue. The back left 3 teeth and right-side has 2 teeth that cause pain but the back right side has been the worst through this whole ordeal that pokes and irritates the tongue and one tooth scratches my cheek. This has been painful causing my tongue with on-going soreness.
Resolution I have been told are the following:
Do nothing you will get used to it, wear a retainer, or put wax in the area. As you can see these are not realistic options for the rest of my life.
Procedures performed since the start of these issues:
Attempt to smooth problem areas.
The top right wisdom tooth was eventually pulled due to a cavity and that provided some relief.
Bottom right wisdom tooth has been smoothed almost flat, it’s a bit better but the side close to the tongue feels like a knife and irritates the tongue.
The top right molar had been filled by a dentist to cover the point of the extra cuspid on the back side, this made the tooth wider and sits on my tongue and feels like sandpaper and something is still pointy on it and something scraping my cheek as well, not enough to show major signs but can be felt by me.
The bottom left wisdom tooth feels sharp mostly around one cuspid area and rubs on the tongue.
The top left wisdom tooth has chips, pokes my cheek and it sits at an angle.
The top molar is shaped oddly and rubs on my tongue when I talk. I have been told it could be hypersensitivity or nerve issue. I do not believe either since when I wear a retainer the pain is not as severe. Also some smoothing has helped. I went off gabapentin to see if it was causing pain as I was on it for my back but have not had any change as far as my mouth. I now am getting headaches but maybe due to stopping gabapentin. I'm not sure where to turn.

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@jjrn

I had the same mouth pain and for 2 years I went from dentist to all specialists.
We finally found out i now had Osteomyelitis of 3 out of 4 jaw bones and had to have those removed.
The culprit?? An old root canal that had a very severe infection.
I had all my teeth removed and implants and teeth
Done in 1 appt for 35%of the US cost by Dr Garita in San Jose, Costa Rica ... He's the best... Teaches in Miami.
They don't sue people in CR... Wonderful Country.

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That is so interesting. I'm glad you found relief. I sometimes wonder if this is my situation. How was it finally diagnosed as Osteomyelitis, was it a blood test or some other test?

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Mouth pain persists and it is mostly tongue on the right side. The top molar has been recrowned 3 times and smoothed and reshaped so many times. The bottom right tooth still feels sharp. Tongue feels like it's getting pinched, poked, etc. I've had many tests and no answers. Dentist is trying ALF expansion but nothing helps and my life is greatly impacted. I don't know what to do. Not sure if its the teeth or a nerve or both. Nothing showed on mri a year ago. Over a year ago 2 biopsies were done. The first was in the tongue and came back as swollen saliva gland. The other was taken from inside base of tongue and was told it was nothing then a re scan didn't show whatever was in the tongue. I keep rubbing tip of tongue on sharp teeth or on the wax that covers teeth so it feels rubbed raw and jaw is sore. I'm out of ideas and hope.

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