That’s what they are calling it for now. Changes often.
For a long time the doctors thought of it to be Tringeminal Neuralgia. But now my third doctor, a pain management specialist has settled for Atypical Facial Pain. I was referred to him by a neurologist or a neurophysician I guess. That was my second doctor. The first doctor who I had gone to was I think a neurosurgeon. That one was a fucking whacko now that I think about it.
Makes me laugh when I see a doctor who is supposed to know a lot of health and the human body has a face like he’s been drinking and hasn’t slept. He had a tired look all the time and spoke like a drunk too. And horrible fucking talking manners, I think they are called bedside manners in doctor speak. This fucker showed no fucking sympathy to a patient who he himself diagnosed to be suffering from the world’s “worst pain”, the suicide disease.
Within two meetings he came up with a 4,00,000 rupee ($6000) radio frequency procedure for me to kill the nerves. Granted that it is probably one of those gold standard treatment options, but one would think he’ll do some more due diligence. And above all as I said, the fucker spoke in a way which hardly convinced me that he has my best interest at heart.
And anyway who does something worth $6000 without first spending some more $100s to get a second opinion.
Like this I ended up with Mr pain specialist. This guy at least seems he cares. I am aware that’s no substitute for expertise, but what the hell. You really want someone to fucking listen to what you are saying when it’s something like this happening to you. And the doc has or had a blog, not updated for a while though. But someone who writes and feels compelled to write, to me is a sign of deep thought and something genuinely sincere deep down in the person.
There’s an entire history here now. But I think going deep diving into that doesn’t add much to the present situation. The point here and now is to share this with anyone else who might come googling the ether for something like this I am going through.
The pain initially was a nerve “tightness”, like a button sort of thing 1cm from my nose boundary on the left side of my face. I used to press that location in and massage it to feel “relief”, which doesn’t mean the pain would stop but it just soothed the tight block like feel I had.
Just like during a sore throat you keep grunting in your throat or use losenges or warm water which doesn’t stop it but soothes it for the time till you keep doing whatever you were to produce the soothing feeling.
Goes without saying this is awkward, the pain starts in any situation, at work or anywhere and you have to sit and press the nerve with your fingers and people see you doing it. Not to mention the twitch like movements you have to do with your mouth sometimes just to “hit” the “pain spot” in the nerves.
People understand sore throat but atypical nerver pain?. .Trigeminal Neuralgia? Not so much. I think it’s just best to explain it as dental nerve pain to people when they “catch” you doing that “weird” thing to soothe the pain.
The Pain Block Injection
The good pain doctor gave me a pain block injection to the nerve 1cm from nose border on the left side of my face(the pain location as explained above). It felt like the pain was in that place for a long long time. It was probably this which made and the first doc call this TN. And it is probably the location where he wanted to get the expensive radiation hit done to kill the nerve. He was also of the opinion for some reason that the block injections won’t work. And then boom. This block injection worked. The pain it seems was gone from that near-the-nose nerve spot.
This was done some 3-4 weeks back. And I have not felt much of the tight block pain button feeling in the nerve spot next to the nose.
I don’t remeber the timeline very well, but within 1-2 days I started feeling the pain in my molar gums on the left side. This is where my pain history comes in.
The second last molar on my upper left side was the very starting point of this whole ordeal. I would feel a pain in this molar for a long time, then a series of ill advises from the dentists began. Never skimp on dentists—or any healthcare professionals. They will cost you a lot more when they fuck up. And goes without saying—Your main doctor at every step should always be the internet.
The first was a lady dentist, she did an single tooth x-ray and found no problems. Then an OPG was done. Which started a whole new tangent in the story. It showed that a lot of my wisdom teeth remained “inside” in slanted position and would probably never make it out. She recommended I fix this part first, it took me 1-2 years to get that sorted out. A surgery was done to get all those crooked wisdom teeth out from the lower left side. There was one “inside” wisdom tooth in the upper left side, which was not taken out.
Then I came back to her for my intial upper molar pain for which I had come to her in the first place.
None of the xrays showed any problem with this tooth. And still the next step suggested was root canal! (These are the points when you should go to the internet) I am not sure how much of the blame relies on them. They obviously are not trained to think through such situations, being only a local dentist! And given how complex the human body is, it’s just next to impossible for one person to even remember and think through all the many possibilities. Read The Checklist Manifesto to understand how complex things can get.
The RC was done. Nothing achieved. The tightness like tooth pain was back. Still the doctor did not think in terms of complex problems like atypical facial pain or trigeminal nerves etc etc. Nothing. She was leaning on the option of extraction. Again here I should have gone to the internet, I did not.
If anything I think during the RC, she did some “cleaning out” of the nerves using a needle like the ones used to pin paper to the notice boards. I have a feeling it just further damaged something deep inside the tooth structure near the nerves as she was pushing it deeper!. .JESUS FUCK.
At this stage I was comtemplating taking the tooth out too. And since I was losing all trust in this lady dentist who I thought screwed up my RC, in all my fucked up wisdom I went to another local dentist. Only if I knew that these local doctors don’t really have any idea or skills in critical complex medical thinking. Their entire career is just sitting down and dealing with simple cases like pulling a few obviously rotten teeth and doing some RCs in much simpler cases where a simple xray tells you there’s a problem.
And it doesn’t help that poorly trained professionals have the same human ego as anybody. Both these nut cases did not refer me to a surgeon or a specialist. They just wanted to do it themselves! It’s easy to pin this on greed and say their motivation was only money, but as already mentioned, things are very very complex when dealing with the human body and doctors like most people simply miss some things.
With him I first did a surgery to take out my upper left “inside” wisdom tooth. The required surgery also cost me the last molar on the upper left side. Now the only thing left was the initial molar on which RC had already been performed.
The tightness gripping pain simply did not stop even now that all my crooked wisdom teeth were out. I made the decision to get this one pulled as well.
And lo and behold the pain did not stop even after that.
The Pain Now
Now we’re back to the point in time since the pain block injection.
I now think the pain was always in the same space in the gums where I had the early problems with the initial molar which started the whole thing. And the RC and the extraction probably just damaged some nerve further due to excessive attempt at “cleaning out” the nerves during the RC by the first dentist and the inital upward thrust the second dentist used right before he pulled the tooth outward.
This pain later spread out to the point to the left of the nose and I felt that’s the problem area. But now after the block I feel no actual tight button like nerve block in that location at all. What I now have is a small wound like pain in inside my gums where the very first initial problem molar was.
When I try to visualize the pain I feel it to be like a ball of wound like thing inside the gums just a little inside the surface. It reminds me of those pin like insertions the first dentist used to make to “clean out” the nerves during the RC. She would rub the pin to the side wall of my hollowed tooth and at times the pin would go a little too deep and hit the nerves in the top—and it is this pain sensation I feel now in a wound like form.
This definitely must have affected me psychologically. I cannot really pin point how and in what instances, but one case comes to mind is when I read up on psychological stamps, a concept in transactional analysis. In short it means that you keep a track of things happening to you without any reaction and then one day you “cash” them in. Like in my eg the continous non-stop pain that I am going through, I use it to justify wasting time listening to music, watching the same tv shows again etc vs let’s say studying for my career certifications. It’s kind of an rationalization enabler.
Or perhaps I really just do it to get my mind of the pain. It is much easier to do so while watching breaking bad than with say studying checkpoint firewalls.