Dentist Mistake,

Hi, I’m sharing my story, it might be unique.  When I was researching my pain, I only came across one other story where the diagnosis was TN when it really turned out to be a dental problem.  I’ve waited for about 6 months to be sure that I seem to be at the end of one of the hardest roads I’ve ever walked. 

In November of 2017, I started having annoying pain near the site of a root canal from about 3 years ago.  It got progressively worse, by late December, I was getting woken up at night by a pulsating, throbbing pain and taking Ibuprofen to sleep, which seemed to help.  After a week or so decided I would make an appointment to have my root canal checked, since the pain was centered around it, but “above” it in my gums.  Chewing and both hot and cold were extremely painful and resulted in a very deep, pulsating ache.  The early morning of December 27th, I can still remember vividly, I woke up in excruciating pain, was literally shaking from the pain.  Ibuprofen didn’t help, even taking 600 mg at a time, it was so intense I was nearly in tears and could barely open the bottle to get to the Ibuprofen.  I was able to see the dentist that same day, he tapped my teeth several times, took x-rays and did cold tests several times.  It seemed to be a very thorough exam.  None of the tests hurt, although I was in intense pain at the time and was in intense fear at every tap, as I was expecting it to trigger the agony.  At the conclusion of the dental exam, he did not believe it was a dental problem, thought I might have a sinus infection, recommended I see a MD and prescribed me Tylenol III.  Tylenol III did absolutely nothing for me.  It is important to note that he never checked any of my bottom teeth, although he checked all of the upper teeth on the side of my root canal. 

The pain got worse and I went to urgent care later that evening, that doctor thought it was a muscular skelto related problem and prescribed Ibuprofen.  Ibuprofen no longer did anything for me. 

My symptoms were:

-Intense pain and agony (hard to imagine worse pain) during 5-15 intense episodes lasting several minutes to around five minutes.  It felt like there 20 or 30 needles in my mouth and sometimes like a drill bit drilling into my gums.  Each episode felt like an eternity with no possible release.  These were truly agony, debilitating and all-consuming, there was no relief other than not to die during the episode. These were agonizing, brutal bouts were with no relief, I couldn’t talk, I couldn’t move, I could barely breath.  There was no fighting the pain, all I could do was not die.  Most people don’t know what that means, but if you are in this forum you probably know what that means.  I couldn’t fight the pain, I could only not die.

-Outside of these episodes, I was in mostly continual pain, often severe, it was pulsating, burning, stabbing (like a needle) or felt like something boring into me.  The pain was on both the upper and lower jaw, deep inside. 

-My gums felt like they were on fire or had been scraped.

-Triggers for the intense episodes were air over my gums (eg, talking, breathing through my mouth), chewing, drinking hot or cold liquid and sometimes drinking any liquid, wind blowing on my face, laying down, shaving, brushing my teeth, showering, and walking.

-I only had a shocklike pain once with a “tic”

-I had a couple times where I got a sudden stabbing pain that made me yell; my yell scared my kids.

-I couldn’t function at work due to the pain of talking, at times the constant pain was too much to effectively concentrate and any of the intense episodes were completely debilitating.

-I could not lay down more than 45 degrees for nearly a month and was unable to sleep due to the bouts of agony.

After urgent care, I saw my primary care doctor who prescribed Gabapentin, referred me for CT scans, MRI and to a facial pain clinic.  As the Gabapentin began building up and my dosage was increased, my pain started to lessen.  After 3 weeks or so, I was able to go outside again but had to wear a scarf to keep the wind of my face.  I was able to eat soft, lukewarm foods. 

As I was waiting for my appointment with the specialist at the facial pain clinic, I decided to get a second opinion from an endodontist.  I explained my history to him, he took 3D images of my upper gum, did much the same things that the first dentist did and was about to wrap it up and conclude that it was not a dental problem, when he noticed that I had a cracked tooth on my bottom jaw.  He then imaged the area and found an abscess that was touching my lower Trigeminal nerve.  He showed me the abscess on the image and there was no doubt.  I started antibiotics right away, had a root canal the next day.  I went off Gabapentin a week or so later and, while I still had some pain, it was clear that it was much improved. 

I ended up having to take a second course of antibiotics because the first course didn’t get all of the infection, but since the second course I’ve had no pain.

In my research I mainly found that people had unnecessary dental work done, in my case it was the opposite, the doctors thought I had Atypical TN when in fact I had a dental problem.  The first dentist should have caught the cracked tooth.  

I made it through with the help of a friend’s wife who has had TN for more than 5 years, her help, advice and understanding of the agony I was in was truly invaluable.

I found during all of this it was really important for me write down my symptoms.  The dentists and doctors didn’t really seem to believe how much pain I was in.  Don’t let them ignore your pain, make sure you push them to get to the right diagnosis, whatever that may be.  If I hadn’t taken the initiative to go for the second opinion, who knows what would have happened.

I also started seeing a counselor during this period of several months.  That was really helpful.  I'm in the military, I understand PTSD, I believe that many TN sufferers probably have some degree of PTSD, I know that I exhibited symptoms of PTSD in respect to the pain and fear of the pain. 

If you have TN, for what is worth, you have my compassion, I got a glimpse of the path you are on and it is challenging.

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