How do I explain this...?

Do friends and family look at you like you're nuts, or delirious, perhaps a hypochondriac when you try to describe this injury? Frustrating, isn't it.

When you have pain that no one can see, you find yourself on the outside looking in a lot of the time. People just react to your complaints like you're batsh*t crazy. You can feel somewhat disconnected from "normal" people, who walk around seemingly without a care in the world, much less a constant, nagging burning, ache, throbbing, or sharp, stabbing neuropathic pain.

For many people on this blog, it's just an annoying numbness...I imagine it must be like that dead feeling in your mouth that turns to pins and needs when you leave the dentist, which typically fades after a few hours. Except it doesn't go away. Most seem to have the burning tongue in common,

Um, ok...

among a variety of other symptoms. How do you describe your tongue burning?

• "It's like you've burnt your tongue on hot coffee. Every morning.
• It's feels like you've scraped your tongue on the sidewalk, only there is no scrape mark there.
• You know that moment you touch a hot stove, and you yank your hand back because it hurts... There's no evidence of a burn yet, but it stings. Imagine that my tongue just touched the stove. All the time. Every day. "

As for me, my tongue is hypersensitive to every sensation... I feel everything twice as much on the left side as on the right. This includes everything from spicy foods, to the natural curves of my teeth. I also get weird little headaches, sharp ear pain, and an achey throbbing in the teeth sometimes that feels like I spent too much time biting on a popsicle. The pain in my face feels like someone is pressing a knuckle into it. And it changes from day to day. A lot depends on weather, stress, sleep, and occasionally, I don't really know why it's hurting.

 How do you describe this to others, and what is their reaction? Reply in the comments.

What it feels like after 4 years

At this point I'm really just annoyed. I'm not in the kind of mind-splitting pain I was for the first 2 years, when I could think of little else but how to relieve this discomfort, and spent hours and hours pouring over the Internet, trying in vain to find better doctors and cures. I learned that there are none.

Now it's become part of daily life. I can manage to go through my day without constant obsessive thoughts about dental pain, so long as I take low doses of painkillers. Every day, every couple of hours, the pain ramps up to the point I notice it, and take a little something to tamp it down again, being careful not to take so much to the point it makes me sleepy. I always feel like I'm keeping this big secret, and I'm not comfortable with dishonesty. But it's necessary in this case.

So, painkillers have also become part of daily life. Granted, the dosage of medication is very low, but still, I need a constant input of pain relief in my blood stream or symptoms escalate to the point of distraction.

This also means having to go to the doctor's office every month, then pray I'll have no trouble filling my prescription; and the time and expense involved with that. Since I am unemployed (again), getting the time off is no longer an issue, but the tests and so forth are not affordable for me with no income coming in. I'd actually like to find new doctors, but I dread starting the process all over again, for really the same result.

I've put off visiting the dentist for cleaning and x-rays for a few years now, so will be going to a new dentist next week. I'm terrified that they will find a cavity that needs to be filled, which is how this whole thing started. But, my teeth have become quite yellow and they just need a cleaning, I feel kind of gross. My toothbrush and floss, no matter how diligently applied, just do not do the job well enough. Professional cleanings are still a must.

I love hearing from others about how they are doing better. I'd especially like to hear from anyone in the state of Florida, as the qualify of medical care I've found is pathetic. If you can recommend any, especially if you have a Naturopath, please don't hesitate to post here or on our Facebook page (you can also message me at Jane Fisher on FB)

Hope you are feeling well. Keep the faith! :)

Don't go to the dentist's office alone

My lingual nerve injury has faded somewhat and things have settled - I'm living "the new normal". My pain that is far less than ever since my injury. But I have a new dental situation that may stir everything again. Sitting eating lunch the other day I felt something pop out in my mouth - it was the crown from a very old (15 yrs-ish) root canal - the left molar, #14.

Apparently, the crown that dislodged was a "temporary" crown, was only intended to last a few weeks, but it's been there since I had the root canal re-treated a few years ago. Yes, I said years. I'm not proud of it, but there you go.

When I was reeling in pain following my lingual nerve injury, no one could figure out why, and they figured it was a failed root canal. When the re-treatment of the root canal didn't completely resolve the pain, they determined I ALSO needed a new root canal in the tooth next to it. I was like an injured deer in the woods, wide-eyed and naive, doing whatever they told me to do. I would have done ANYTHING to make the pain stop, and I imagine you feel the same way right now.

Were either of those procedures really needed? Who knows. Maybe all the pain was just from the LNI. )

Why did I never replace the temp crown? I can only guess that
A. I was so traumatized by all the work I had done on my mouth in 2010-2012 that I decided to postpone further dental work because I remember the doctors telling me to "give it a rest - let things settle" (only things never did settle, completely) and,
B. that crown simply got lost in the shuffle, after learning I urgently needed crowns on 2 other cracked teeth, in addition to the nerve injury I was still trying to nurse...there was just so much going on, that it was never done. I thought it was done, but it was not.

So now, bacteria has been able to creep in underneath all this time, so the already-dead and discolored tooth is now decayed to the point that the tooth is kind of falling apart.

I'm painting a really pretty picture here, aren't I? Trust me, I'm as grossed out as you are.

How could this happen? Well, anyone going through the life-altering distraction of a new lingual nerve injury knows that you aren't exactly on top of your game, and there may be details that, well, slip by. This all occurred at a time I was going out of my mind trying to trace the case of my ongoing pain and getting no answers, seeing doctors all over town, getting two very expensive root canals on the same side of my injury which only exacerbated the situation and, in hindsight, may not have even been necessary.

The crown falling off last week was actually fortunate; I wish it happened sooner. Had that not happened, I would not have realized I needed to do something about that tooth- remove it - and that possibly some of the continuing pain in my face/tooth/gum is caused by an infection there.

The dental assistant when I went in for the loose crown last week scolded me, saying "That's what you get - you can't let these things lie, Jane". I quickly rebutted that this was not intentional, and their office never called to remind me the work hadn't been completed. Their response is "we inform our patients when we see it, and it is up to you to remember".

You could say "What a crappy dentist!" and tell me to find another one, but this new dentist works in the same office as my orofacial pain specialist. Now that the pain is controlled, and I can think straight (well, straighter), I wonder what else "slipped by" over "the lost years" since being injured on 12/31/09.

If you are lucky enough to have someone you can bring with you to the dentist's office, do it. They'll be thinking much more clearly than you are. I'm not married, and my kids were still young then. Now I discuss my situation with them and they are a great sounding board. Back then, it was overwhelming, and not fair to put it all on them. I'm the parent, I'm the one who's supposed to be strong.

So now tooth #14 is dead and needs to come out, it's not healthy to keep it in my mouth. In fact, there is a school of thought that says root canals, trying to "save" teeth in general, are completely unnecessary. I can see how cosmetically they'd be desirable on front teeth, but should root canals in back teeth be performed at all?
They cost well over $1000+ in my area and only last 10 years max (the dentists never inform you of this, you assume it's fixed forever), root canals weaken the tooth making cracks more likely, so need to be covered with a crown which also costs an additional $1000 or so. We pour thousands of dollars into a tooth which is unhealthy, leave it in your mouth, and need to remove it some years later, anyway. The alternative is tooth extraction. Holistic practitioners advocate tooth removal and no root canals. I did not even know this was an option back when they were done!

This week I'm walking around with just a little brown nub in the spot where my molar used to live. I'm scheduled for oral surgery next week to extract what's left of the tooth. A few months from now, I'll have a permanent implant/ fake tooth put in that spot. It will cost a small fortune, even with dental insurance (insurance doesn't cover everything, and they may consider this cosmetic, but actually the tooth is being replaced to keep others from shifting out of alignment into the gap).

Knowing what I do now, I wonder why patients are never fully informed of their options, and always have to learn the hard way. If not for the Internet, I would not know any of this. Which is exactly why I'm blogging this today - because you may find yourself in a similar situation (or may have already in the past).

Going to the dentist has started feeling a bit like going to a used car lot. You wonder if you've been scammed, no matter how honest and fair they seem.

What else is there that the dental profession isn't telling us?