Does anyone know what TN is? I don't

General General TN & GPN (Old Site)
1

Just a quick post.

Not that I've read it for a while but the IHS classification for TN can be found at,

http://ihs-classification.org/en/02_klassifikation/04_teil3/13.01.00_facialpain.html

Diagnosis would seem quite stringent according to the above, jet reading recent posts we have; vasoglossophyngeal neuralgia, atypical odantalgia, sinus neuralgia thrown into the mix.

If it doesn't fit the IHS classification is it no longer TN and something else? Or an oversight in the classification? I ask the question bearing in mind with a IHS based diagnosis, the cause is unknown, so why would additional symptoms certainly in the trigeminal nerve field change things, ie sinus, now TN no longer a diagnosis? when classification does not allude to a cause.

Trigeminal Neuralgia at base level means pain in the trigeminal nerve distribution. IHS classification if adhered to is lacking.

Recent example, patient complaining of pain back of head and diffuse facial pain: Occipital neuralgia, TN or other?? Separate the symptom pattern we have possible occipital neuralgia and TN both pretty meaningless if taken separately, which many folk do. Both relatively unusual together more so.

Anyhow after a couple of physical therapy treatments later much improved, also his persistent sinusitus since age 14, which for some reason wasn't covered during consult ( we can all improve) but was volunteered.

My point being, had he just mentioned his facial pain to a neuro would he have been diagnosed with TN, and later had he mentioned his additional symptoms would they have been given an additional diagnosis to worry about when all three were connected?

When the diagnostic criteria according to the IHS is such leads to an additional diagnosis for further symptoms and hence know one patient or otherwise knows which direction to head,

Incidently the patient cancelled his private consult, some thirty miles away because he was feeling better.

So is a TN diagnosis, not this example, but past, no longer TN, when treatment of the neck eases symptoms? Is it no longer TN when additional symptoms to the IHS classification rear, when the classification has no concrete causation, just hypothesis.

As an aside I have a new patient coming in four days time, I treat her husband for something and he asked if I might help his wife with neck pain-sure maybe depending. By coincidence during treatment he mentioned his wife has facial pain and has had 2, yes 2 MVD surgeries unsuccessful.. OK he might be confused, but unlikely, now what would be nice is if she was a member of this forum maybe inactive, and treatment of her neck helped her TN. I'll let you know.

Either way IHS classification would seem to be too narrow, or fairly worthless, worse still maybe directing patients to destructive procedures before the conservative. I've yet to make my mind up.

2

aiculamoth,

I think TN is a real condition, and majority of TN1 cases are a direct cause from blood vessel compressing the nerve. In cases of ATN, I do agree treatment options are too narrow and causes don't even exist. It's definitely a type of TN, and as hard as ATN patients have had to prove they have a REAL condition, it needs to be recognized as one. BUT, I so agree that compression from neck should be investigated as a cause. TN/ATN is so rare that few doctors have even seen a case. I went to doctors for 20 years complaining of horrible sinus headaches and what I described as sinus infection that's in the bone. I recently saw my medical record and official diagnosis was some long term for for hysteria. During that time, I saw the same doctor for neck pain and he did refer me to PT but for the NECK. I never thought to tell the PT about sinus issue.

The past 10 years I've been on every antiseizure med, antidepressants, steroid nerve blocks, radiofrequency ablations, surgery to implant neurostimulator and to remove it (due to severe reaction to "pure titanium" electrodes) all while my pain has progressed and now become bilateral. In all this time, no medical professional has even mentioned the possibility of neck compression. You are on to something, aiculamoth.

3

Hi Mary L

I think TN is not a real condition/ diagnosis, merely a description of symptoms, from the evidence I have researched. Not real? let me clarify, facial pain is obviously real when experienced for whatever reason, but all TN means is pain in the facial region, there are many different causes, with many having the same base.

I don't actually believe TN1 is caused by vascular compression, there are many research papers which say so, but I've lost faith in many research papers because of extreme bias not least if the research paper doesn't demonstrate what the author's want publishing it is ignored and they move on to the next hoping for better results. Whether or not we believe in vascular compression, some knowledgeable folk here would seem to suggest it only responsible for circa 5% of TN.

Ther are possible answers to why MVD works besides the obvious, are they right who does know? but I don't expect a trial anytime soon.

Again TN cause is still a hypothesis including vascular compression in my opinion and others, you may as well ask what causes headache- any number of things, same for TN a rare disease but different causes- possibly.

Vascular compression leaves many unanswered questions which I've stated before, yet present to your neuro with TN1 where next are you headed if meds don't work? MVD and/ or destructive procedures for a complaint in which the cause is a hypothesis- not good science or medical practice, my opinion.

In twenty years I've come across now circa 8 folks with diagnosed, by medics, TN, including a current patient. Since taking a more active interest, instead of thinking said patient has facial pain, here's what we will do, I reckon I've had eight this year who had they gone to a neuro would have been diagnosed with TN, followed by the travesty of medical intervention.This is beyond what you would expect from population TN sufferers, do they attend therapists, are helped so are not included in the stats?

Can Physical therapists help, all with TN, most certainly not even if the cause is neck dysfunction, I don't pretend I can help everyone with every kind of neck problem. A large percentage of TN suffers, with some evidence, are associated with autoimmune/ connective tissue disorders, which can often cause neck instability and hence TN through cervical mediated pathways.

How often, as you state Mary L, do you think either neck or connective tissue disorders are considered by your or anyone elses neuro? Be interesting to hear form those on the site, I'll put a generous donation to TN (assuming I manage to sell the Porche) if I'm shown to be wrong.

Another very active member on this site, judging by his posts, would seem to softening to the idea of the neck being a cause, though a little behind the curve presented by the evidence.

4

aiculsamoth, I'm not giving up my hydrocodone just yet, but I'm definitely going to give PT a shot. Gotta do the referral thing which means finding a new GP since mine had to take unplanned medical retirement. I haven't been to a neuro for years. I am going to look for a PT who has worked with TN or face pain patients. If you have any advice on how to find a good PT or what questions I should ask, let me know. I really appreciate your input on here.

5

Hmmm. I'm pretty sure my neck plays no part in my facial pain. For years I had chronic sinus infections but only seemed to affect one side of my face. But it turns out they weren't sinus infections. A CT scan showed that my sinuses were clear.

Several doctors diagnosed TN. I went for 4 years without pain and then, WHAM, it came back with a vengence in attacks that generally last for a few weeks. Now, I'll go for months with any episodes. Lately I've been dealing with pain every day, although not debilitating and not bad enough that I have to miss work. I have also gone to a chiropractor for years and have my neck adjusted every time. These adjustments, in no way, trigger or stop pain in my face. Instead they release tension at the base of my skull and down to my shoulder blades.

Also, my face pain has been triggered by having invasive dental work. One time I was certain there was a hole in the filling I'd just gotten because the pain coming from that tooth was severe. I went back to the dentist and after he examined the tooth he said there was nothing wrong. The tooth was not to blame for my pain. Sometimes, like yesterday, the pain seems to come from a tooth and the tooth feels like fragile glass. I don't believe any of this can be related to my neck and while it's possible I have some other sort of neuralgia, TN seems to fit the bill.

6

Karen,

In one sense it is great you are pretty sure your neck has no bearing on your TN, you can take pharma without a known alternative, you can even undergo invasive procedures and able to state what choice do I have.

You are misinformed and your thought process potentially flawed. 'TN seems to fit the bill', well it would and should but is not a diagnosis but a description of symptoms, symptoms in the trigeminal distribution including sinus.

You don't even have to have pain in the neck to have neck related TN, yet you apparently do- who is to say your chiropractor is targeting treatment to the right area? Sinus pain, without sinus infection ( even with) can suggest a neck cause due to irritation of the spinal trigeminal ganglion.

You state dental treatment as a trigger, without any abnormal follow up with a dentist. Dentistry places a lot of pressure on the cervical spine. Your story of TN 2 would shout neck involvement.

To be fair to yourself and your chiro, neck related TN if it applies to you, and I would suggest a strong indication, is multifactorial and not everything can be addressed in the clinical setting, much is down to the individual, and whilst this might be pointed out by your therapist- and I don't state this is you Karen, but you might identify with certain points;

Poor posture, either at work or home,- your chiro can highlite this but it is up to you to make the changes,

Diet see above,

Consideration of other existing health complaints influencing the neck, see above, in part,

Stress, both family, work and relationships. This is possibly one of the hardest to address, stress/ emotional trauma which can be 'held' in the neck, as depending on the trauma, human nature has us repeating the trauma especially if we feel we weren't at fault.

The above isn't exhaustive, but if you consider each of the above as a hand pushing you towards the cliff edge, it isn't long before you fall over the edge and become a statistic., between a rock and a hard place, or even drowning.

If the above and other is considered, TN becomes like most illnesses multi faceted, and if to have a potential positive outcome, needs recognising by the patient that in some ways they have responsibility for their condition. Not easy when western medicine promotes a pill for all ills, and patients don't want to take responsibility, often it is an uncomfortable admission.



Karen Brown said:

Hmmm. I'm pretty sure my neck plays no part in my facial pain. For years I had chronic sinus infections but only seemed to affect one side of my face. But it turns out they weren't sinus infections. A CT scan showed that my sinuses were clear.

Several doctors diagnosed TN. I went for 4 years without pain and then, WHAM, it came back with a vengence in attacks that generally last for a few weeks. Now, I'll go for months with any episodes. Lately I've been dealing with pain every day, although not debilitating and not bad enough that I have to miss work. I have also gone to a chiropractor for years and have my neck adjusted every time. These adjustments, in no way, trigger or stop pain in my face. Instead they release tension at the base of my skull and down to my shoulder blades.

Also, my face pain has been triggered by having invasive dental work. One time I was certain there was a hole in the filling I'd just gotten because the pain coming from that tooth was severe. I went back to the dentist and after he examined the tooth he said there was nothing wrong. The tooth was not to blame for my pain. Sometimes, like yesterday, the pain seems to come from a tooth and the tooth feels like fragile glass. I don't believe any of this can be related to my neck and while it's possible I have some other sort of neuralgia, TN seems to fit the bill.