An Unnerving Start to my Medical Journey with TN.

… and the pun is intended…

Isn’t it a bummer to develop a condition that is (seemingly) unknown to 80% of the medical profession and ignored by the other 20%?

When I went to see my GP (Note: that’s a “general practitioner ” in Oz, the UK and probably across the Commonwealth. I guess in the US it’s a “family doctor” or physician?)…anyway, I went to see him as suggested by the doctors in the Box Hill ER.

Now, you certainly could not accuse my GP of being especially highly skilled. Not a great diagnostic track record: I had my 2006 stroke at night, and Dr Google saved my ass then, but when I had a heart thing, I had to ask my GP to organise an ECG which led them to discover that I had indeed  experienced a cardiac “event” (in fact, two).
BUT… on the flip side, I’ve been with him for 25+ years. We get along well, and I am comfortable with his plus- and minus-es. And a big plus is that he invariably sends me to a specialist sooner rather than later, and very good specialists, to boot. He trusts my judgement – and probably doubts his – enough to never question or hesitate when I ask to be referred to a specialist. Priceless in a GP. I am comfortable with his approach, skill level and manner. I will stay with him as long as we are both around.

This was almost funny, though. He was amazingly resistant to my mentioning the possibility of TN. And when I told him about how the examining doctor at ER had probed at the T nerve area above my eye and produced a pain explosion….he actually said with some derision “That’s not the trigeminal nerve!”
I almost suggested (mildly) that he look at a 3D diagram of the nerve, available on many internet sites. I didn’t, though. It was not a big issue to me because we were already in discussion about seeing a neuro, etc.
And it was not his fault. It seemed to me that trigeminal neuralgia is not on his radar. He’s probably never had to look it up or deal with it.

AND.. that ties in with what I am seeing in many blogs and in comments left on blogs by other TN sufferers:  Almost every TN diagnosis seems to be made only after months (if you are lucky!) and more commonly after years of misdiagnosis.

A couple of examples:

…It took me over 20 doctors to even get a diagnosis….

…My pain is the right side.I saw 6 dentists the first two years and they gave me wrong treatments with 4 root canals, a tooth extraction, and an implant that had to be removed later. After 2 years I was diagnosed by a professor in LSU dental school with Trigeminal Nerve Neuralgia…

Take my rocky start…. I saw a neurologist when this first popped up, in 2015-2016. A very good neurologist too.   Being the quintessential computer geek and an engineer, I believe that medical people can only diagnose if you give them as much – and as accurate – data as possible. The old GIGO – garbage in, garbage out – rule.

And I went into detail at that time about how it seemed to trigger off in the shower, how I could sometimes get it back by screwing up my right eye. Both of which symptoms pop up TN in even the most basic combined google search. (I feel an idiot for not searching on them myself – I kept looking for “pain in the head”, “Pain behind eye”, etc – and got sidetracked by all the other headache and opthalmologic symptoms).   Never thought of it as facial pain – and I must admit, I still don’t.  Even now it seems to feel inside, rather than what I would think of as facial.

And this very good neurologist  did not even countenance the possibility of TN – or make any mention of it, in spite of my detailed description.

I’ve wondered about this in the past 6 weeks, and have a few thoughts and observations about it:

1.  Trigeminal Neuralgia is just plain rare. Between false diagnoses and ignorance of its existence, I doubt many GPs ever come across it in a lifetime of practice.

2. In my opinion, the medical profession tip-toes around conditions that are diagnosed based on symptoms. Understandable in a profession that is now so grounded in diagnostic tests:  pathology, imaging, biopsies, et al.  And that wariness is especially marked when it comes to recording it on paper. Like the doctors at ER who picked up that this was a trigeminal nerve issue and explained it to me with a model of the skull, etc. When they wrote their report, it was about how I presented with “facial pain” which “probably needs further investigation” – and not a mention of the trigeminal nerve. I don’t mind that. I am quite happy for them to play Doubting Thomas … Devil’s Advocate?…
It is what it is. Or, more correctly, it will be what it will be.

3. I have wondered whether my neurologist suspected what it might be – but thought against even mentioning it. Tying into point 2 above, why would she mention a condition that is essentially untreatable and incurable, other than with methods that are currently not definite solutions and that have some pretty bad side-effects.    That must so go against the grain of a skilled practitioner. Maybe the thinking was “This guy is not really going to benefit by knowing about it now. Let’s wait till it returns at a level that demands attention, then address it…” And maybe even the thought that there could be clearer solutions to the problem available in the future, so we may as well wait.

4.  An interesting one. The young doctors at ER picked up on this pretty quickly. As did another young doctor in my life. My dearest friend in Oz is Tom,another of my Absorbers, one who has carried me through some of the darkest points of my life. His daughter Athena is a hot-off-the-press graduate doctor, currently working through her rural placements/internships.  I believe Athena has an amazing combination of both her parents’ compassion and of Tom’s keen analytic mind and it is pretty clear that she will be a remarkably good doctor in whatever discipline she chooses.
Still, I was intrigued when Tom mentioned that when he described my symptoms to Athena she had straightaway mentioned that it sounded like a trigeminal nerve problem.

I can only conclude that younger doctors seem more open to – and knowledgeable about – trigeminal neuralgia and its cohort. It is probably something now being heard and taught in medical classrooms, and that can only be a good thing.

So, with all the above ( and as always, I may add more stuff here as I think of it), here are some Dos and Don’ts that I would advise if you have fallen down the rabbit hole into Painworld and think you may have TN…


DO:

  • DO get information from reliable sources: If you are reading this, you are probably researching information on the internet. Make sure you are getting information from valid sources. Try and start with advisory web sites of the government health organisation of your country, and work from there. For example, here in Victoria, my State in Australia, there is this web site which has very good advice on finding health information on the Internet:

One of my personal favourites is the Mayo Clinic, in Rochester, Minnesota in the USA.

  • DO remember that Trigeminal Neuralgia is a rare condition.  The lack of information about it can make us vulnerable to quackery and to misleading information.
  • DO exercise good judgment. The Internet has spawned many medical information web sites, dispensing information on diseases, treatments, medications and just about every aspect of health. There are some “umbrella” organisations which run many web sites, some of which appear to compete directly with one another. An example of this is the WebMD organisation whose Wikipedia reference says this:
    “The WebMD Health Network operates WebMD Health and other health-related sites including: Medscape, MedicineNet, eMedicine, eMedicineHealth, RxList, theheart.org, Medscape Education, and other-owned WebMD sites.”

Exercise sound (= cautious!) judgement when taking on information from sites like this. They do have a lot of good information, are immensely popular with the Net-surfing public and make a lot of money from their advertising. But also be aware that many of them may have some level of sponsorship by pharmaceutical companies or may derive income from other sources, creating some level of bias in the information they provide.
A google search will often find reviews of these sites which can help you evaluate their authenticity.
I prefer to stay with web sites run by primary care organisations (hospitals) or research organisations associated with institutions of academia or government. Like the Mayo Clinic and University of Manitoba sites I have listed elsewhere.
If you are in doubt, ask around.

  • DO join a support organisation.
    There are TN support organisation all across the globe. My plan is to have a page in this blog with a world map and links to support organisations as I find them. But of course, you can google them. Read and question before you join them, subscribe to their newsletters at least – if you cannot afford a subscription fee.

DON’T:

  • Don’t click on links in comments on blogs.
    Blogs are personal journals. The owner may not be able to keep it free from spam and dangerous links. People prey on the vulnerable – and the levels of pain in TN can make us desperate and distracted. For example, the lovely blog of Sarah Heavey  has many comments/replies to her posts that are spam – and therefore malicious. Recommendations of cures, medical sites, etc. To my experienced IT geek eye they stand out right away – you may not spot them easily. This is especially true of TN blogs. It is such a cruel condition that many blogs seem to trail off – or they  lie idle for many months in between posts. A perfect playground for spammers, via the comments.
  • Don’t inadvertently spread misleading information.
    This follows on from the previous point: If you see a link in a comment extolling the virtues of a web site or a cure or similar, don’t blindly share it on social media or in another comment. You are most likely spreading spam.
  • Don’t assume anything about medical practitioners.
    “Old” is certainly not automatically “Gold”, in spite of the saying….
    Your GP of long-standing may not be familiar with TN – and maybe has never heard of the condition. Question every diagnosis and the basis it was made on. Especially yours! Don’t get carried away by Dr Google, self-diagnose your condition and then reject every diagnosis that does not agree with you. Only crazy or stupid people do that.

 

OK.  I want to post this asap, so I’ll stop now – but will update as I feel necessary.
Have a pain-free day.

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