TN Diagnosis but I Disagree

General TN Discussion
1

Long story short. I finally got an MRA yesterday. A very clear compression was found on the right side. Two MRIs over the past year - one regular with contrast and one with contrast and a thin slice to the trigeminal nerve showed NOTHING.

The doctor who gave me the MRA is world-renowned - told me point blank I have TN. He thinks TN is black and white. You have the compression, you have symptoms - - - you have TN. Told me I should consider MVD because after 8 years of pain, long standing pain relief results from a MVD decrease.

RECAP
I just donā€™t feel like I fit into the classic TN category and the surgery is MAJOR with possible side effects. Back in 2013, I had a dental implant - no where near the nerve on XRAY. For about two years, I had electric tingling along the mental nerve. Not painful at all. More like a tickle. In Jan of 2016, had a tooth pulled that was root canaled twice - upper right. The tooth showed no signs of anything on the XRAY but I had a bout of MRSA in my right sinus and the tooth hurt when I chewed hard food (not that painful - more annoying). My ENT said the tooth could be the source of a continual infection in my sinus since the roots penetrated the sinus floor. The tooth was extracted - there was decay in the root. After the extraction, the pain moved to a dental implant in front of the tooth. Thatā€™s when things got interesting. I started with occipital headaches off and on from March to July of that year with a few full fledge migraines which I never had before. I had a cap put on a tooth in July and the dentist had my mouth open for two hours pressing on my lower jaw. After that appt, the occipital headaches became daily and severe. And the chin tickling that I had years prior turned into zaps. In October, the weird sensations in my face started. Little stings here and there but nothing too bad. All right-side by the way. My main complaint was a horrific headache. The facial stuff was weird and concerning, but not too painful.

Iā€™m about a year out from when hell broke loose last year and I have to say, I donā€™t have pain-free days, but Iā€™m ok. Iā€™m so much better over the last few months. 600mg gapapentin, 40 mg nortriptyline, .025 of klonopin, botox every 4 months.

The pain I had in the back of my head is now in my temple area, but is now more pressure - I canā€™t wear any type of glasses because it irritates my temple. The doctor yesterday thinks I have TMJ or TMD in addition to classic TN. He said temple discomfort is not TN related. Iā€™m majorly confused here. The chin zaps are honestly the most scary part now but not that painful - like someone shooting a rubber band from across the room. I can have days where itā€™s all day then days where itā€™s all calm. Some zaps are very faint and others more pronounced. My main concern is the other aches in my face that keep me from doing any real exercise or make me feel like there is a balloon under my temple moving around or various squeezing/ tightening in eye area. Just enough to keep me feeling ā€œnot normalā€.

I feel like I have ATN. The doctor says that the chin will get worse over time and I have classic TN. Compression equals classic TN.

I do feel better now that warm weather has arrived. Iā€™m just going to see what happens over the next year and not rush into any type of surgery.

Any opinions or similar experiences? The doc did say that because Iā€™ve had a lot of dental work (Iā€™m 47 yrs old), it could have ā€œkindledā€ the TN that was bound to happen anyway.

Melanie

2

Hi Melanie,
I think your approach makes total sense. I agree that much of what you are experiencing does not seem to fit the classic TN diagnoses. I can relate to your storyā€“I am very familiar with the electric, tingly, ā€œticklyā€ feeling. I tried very hard to explain this to my dentist, but they looked at me like I was a green bug. I also had an infection, had both a tooth pulled and a root canal, and after that Iā€™m left with constant pain. Fortunately I have not experienced headaches or zaps.

My diagnosis was traumatic trigeminal neuropathic pain. But from what I have seen, it could be labeled many other namesā€“ATN, TN2, atypical odontalgia, lingual nerve pain, etcā€¦etcā€¦Not sure that the label is very helpful other than allowing us to converse more easily, and maybe have a tiny idea of what treatments might be most successful.

Certainly an MVD is something to consider if you have a compression. But ā€œnormal peopleā€ have compressions all the time, and it only results in TN for a very few. I would also be very hesitant to have brain surgery until all other options were exhausted, and I was still in unbearable pain.

Glad to hear that you are doing okay!

3

Hi Melanie, you may never know whatā€™s causing the pain, but the fact is it is almost certainly nerve pain (unless you suspect it isnā€™t? In which case what do you think it is?), and if itā€™s nerve pain then it will all be treated the same way. You do sound as if you have TN, and like most TN itā€™s complicated and rather unique to you. The only important thing here is how you want to treat it. If drugs work for you then stick with the drugs till they stop working. If they donā€™t work, then really surgery is the only option.

The fact is this is wholly your decision and you have to go for what feels right to you. If you donā€™t want surgery donā€™t have it, but you have to accept that either that or drugs are the only two options available to you until research finds a cause and/or cure. I know there is a great temptation to pursue endless diagnoses but really that just steals your life.

As a (rather important) aside, many people think that ATN is just advanced TN, and sometimes vice versa - in other words, itā€™s ALL TN, just at different points of degeneration. After some time with the condition now I suspect thatā€™s true, so it morphing and changing may feel like different conditions but really itā€™s just stages in the continuum. Like I say, the best thing is to roll with the punches and make your own decisions on what feels right. Doctors are blundering around in the dark with this and really do not have the answers.

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Hi
Those 2 ladies are pretty smart.
The only thing I can add is to try and find a copy of the book Striking Back.Lots of good info.
Good Luck

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One thing I might add is get a second opinion and advocate for yourself. I have ATN and it sounds like you might have it too. People can also get both, even on the same side. I do agree with the doctor about feeling pressure in the temples. That is not a sign of TN or ATN, but is a sign of TMJ. It might be prudent to see an orofacial specialist about that.

6

Youā€™re not kidding about blundering around in the dark. At this point, unless I was having classic TN symptoms that were unbearable, surgery is out of the question. I do think itā€™s important to closely match symptoms with ATN or TN because from what I read surgical intervention like cyberknife or glycerol injections can ease TN, but make ATN worse. I do agree that trying to locate an exact cause/diagnosis is all-consuming. 85% of the time Iā€™m a normal working mom just dealing with this new normal. Itā€™s just that 15% of the time when Iā€™ve had it or am having a bad day that I get desperate for answers.

If I truly have TN, surgical results are best when done within first 8 years of onset. I still have time to see if this blossoms into anything completely unbearable.

Thanks for your advice. I definitely trust my own instincts.

7

Thank you for responding. Iā€™ve seen a few orofacial docs. Two diagnosed me with some type of temporal tendonitis which is a TMD in the same family as TMJ. Iā€™m waiting for a bite guard to be made that will even out my occlusion and prevent clenching.

One oral surgeon told me that because the mental nerve is cradled in the sling of master muscles on the side of the face, it can get triggered. Mine was previously ā€œbruisedā€ with a dental implant in 2012 that left it tingly off and on.

I think Iā€™ve had a lot of dental work over the last 20 years - too much. Dental implants and extractions are surgery. I tell everyone I know to proceed with caution. I never knew what a trigeminal nerve was while I was agreeing to all of this dental stuff. Itā€™s recommended with such nonchalance that I never questioned it. Had I ever even knew what ATN or TN was, I would have run for the hills or at least held off on those back molars which are close to the peripheral trigeminal nerves.

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Thanks, Ellen. I read the book. It defines TN1 and ATN (TN2) as ā€œspontaneousā€ - not due to a trauma. My pain was the result of trauma so Iā€™m more in the neuropathic pain due to trauma category I guess.

Iā€™m learning that no two TN patients are the same which makes it difficult to put us in a certain box. Now that I have a compression, it sort of complicates matters. As far as an MVD, the surgeon said an MVD would relieve the sharp pains and zaps. It will not affect the aches which are my main complaint.

Melanie

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Thanks, Ziggy. The surgeon told me 5% of everyday people have compressions. Some have symptoms, some donā€™t. Some people have full blown classic TN without a compression. Go figure. I wonā€™t be signing up for an MVD anytime soon based on those statistics.

Just curious, our stories sound similar. What are your symptoms?

Melanie

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I put myself in the dental trauma thing also-but then started thinking
about WHY I went to the dentist in the first place.It was because a tooth
was sore and a bit loose ,so I had it pulled-dental phobia.
But-why was the tooth sore to begin with?
That is the 64000 dollar question.

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Melanieā€“my saga started with an abscessed crown, but I do also think it was related to withdrawal from amitryptiline after 35 years ( a simplification, but a long time of continuous drug usage). It started with the ā€œtingly, ticklyā€ feeling for a couple of months (along with some bruxism), eventually I went to the dentist and he found an abscess.

After that I had an attempted root canal, tooth removal, a root canal next to it, crown and bridge placement. But due to the ongoing pain/discomfort I also had 3 courses of antibiotics, bite adjustment, deep cleaning, craploads of x-rays, MRI and many visits with periodontist, endodontist, oral medicine doctors and GP.

Currently I have a tight, pinched, achy feeling around the teeth in upper left, it moves around a bit. I also have some numbness and tingling on the left side of my tongue, and tightness at the back of the lower jawā€¦ The pain is pretty much 24/7 without treatment, but it eases up a lot at night, thank goodness.

During the worst of it, I also had quite a bit of numbness on my cheek, and ā€œburning stripsā€ and scratchiness across the palette and down my throat, worse at night. This gradually went away when I quit taking opiods for pain relief.

There is nothing on my MRI that seems abnormal, and I am nowhere near considering any kind of invasive treatment at this point. Iā€™m not even ready to give up and take systemic drugs yet. Trying to exhaust all other options!

12

Trigeminal Neuralgia pain is sharp shooting electric jerky pain. It lasts for a second or so in the beginning. It is simply unbearable, unable to eat, drink, shave or brushing teeth. When I had this pain Tegretol was not available. I became so helpless, lost weight was bedridden, even wind blowing across face would bring the pain on. My neuro surgeon immediately diagnosed it as TN without MRI. MVD was not heard of during those days (1962-63). I had no option but to go for major surgery which brought me permanent relief from pain but also numbness on face.
The TN pain is typical, from mere discription of pain and the helpless condition of patients should make an easy diagnosis.
From the description of pain I feel that you do not have Trigeminal Neuralgia.

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Thanks for your response. I agree with you. Iā€™m assuming your symptoms were sudden onset and not a build up over years.
Melanie

14

All of those dental procedures probably caused your TN. Some orofacial dentists and endodontists think they are God and think that they know everything. Those are the dangerous ones to stay away from. :slight_smile:

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ATN is not an advanced form of TN. TN is usually due to damage being done by blood vessels touching a nerve and wearing away the myelin sheath. ATN is caused by other issues. You can have both forms at the same time.

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Disagree that TN is usually caused due to damage of the blood vessels, the evidence isnā€™t there, only outcomes of MVD lend any support, which are probably skewed due to outcome measures and time periods usually determined by those folk performing the MVD. Plenty of people have vascular compression but no TN. A large part of the Trigeminal nerve isnā€™t even myelinated.

Most diagnostic criteria for TN isnā€™t based on the known causes, but treatment outcomes. This often means blindness to the other portions of the procedure or even the fact folk get better with the bodyā€™s own healing processes. Reckon the fact a particular treatment can help often ignores investigation of the cause in fullness. \Weā€™ve got the money shot.

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I admire your confidence, HLT, but unless you are party to some research or a brilliant neuroscientist that we do not know, you canā€™t make definitive assertions about TN causes - or itā€™s nature. All the theories about it being damage to the nerve and due to blood vessel compression are exactly that - theories. As yet, itā€™s simply a ā€˜best guessā€™. Yes, they find these compressions in some TN sufferers but they also find them in the (autopsied) brains of ordinary folks with no TN history - in other words, a nerve ā€˜compressionā€™ by a blood vessel doesnā€™t uniformly equate with TN.

Likewise, many people, including myself, have had our MRIs and had zero sighting of any compression anywhere. Our brains are to all intents and purposes free of said causes and yet here we are, suffering classic TN. Also, some people, from sufferers to neurologists, believe that ATN may simply be a degeneration of classic TN - this is especially true of long-term sufferers who have personally experienced TN changing its nature. Even my own experience, which is far more limited than some, has shown my TN change from itā€™s first ā€˜attackā€™ of perfect classical TN (constant very sharp electric shocks, caused by virtually everything) to its current nature of permanent low(er) grade sensitivity with occasional shocks, which are less severe than the originals. When you consider that this is after a fairly long period of remission, its all the more remarkable as a change for whatā€™s widely thought of as a ā€œdegenerative conditionā€.

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You are right, you do have limited experience and knowledge. First of all, most regular MRIs will not show compressions. You need an MRI with a CISS, VIBE, or FIESTA protocol. Most of these are found at large city or university hospitals. This information came to me directly from Dr. Jeffrey Brown, neurosurgeon in NYC and Chairman of the Facial Pain Associationā€™s (FPA) Medical Advisory Board. I am a patient member of the FPA. I get information from Dr. Mark Lynskey, neurosurgeon at UC Irvine about how he detects TN. Dr Ramesh Babu, neurosurgeon, has told me that TN is always caused by a blood vessel pulsating on the nerve. Many times the vessel will not show up on MRIs, even using the aforementioned protocols and using a 3Tesla MRI machine.

You are right that autopsied brains of ordinary folks have shown blood vessels touching the nerve and there was no TN present. The reason for that being, is that the protective (myelin) sheathing covering the nerve, was not worn away. The reasons behind this include, but are not limited, to the blood vessel just started to touch the nerve and did not have time to wear off the myelin, the myelin sheathing was extremely strong, or the blood vessel was very small and did not have the blood flow needed to cause any damage, or there can be some other unknown cause. The fact still remains, is that TN1 is always caused by a blood vessel pulsating on the nerve and has worn away the myelin sheathing. This is no theory, top neurosurgeons and neurologists know this to be a fact.

I personally know a friend who has both TN and ATN. They know the cause of the TN, and the ATN. The TN is caused by a blood vessel and the ATN is caused by a lesion. Of course, we all know that ATN or TN2 is harder to diagnose in most due to the damage being harder to detect. A lesion can form somewhere on the nerve, scar tissue pressing up against the nerve, or something unknown.

Neither types have any cure, however TN1 can have periods of remission with some lasting a few years. However, the pain always comes back. TN2 has not shown to have periods of remission.

I have done hundreds of hours of research reading and listening to experts and patients about this, plus my own experiences. I have ATN/TN2 which was caused by shingles inside the head which several doctors and a targeted MRI (similar to FIESTA with a 3Tesla machine) have confirmed. It also caused other damage to my other side of my head which caused hemicrania continua. I also want to point out that many people, including myself, have this condition worsen over time, while others are consistent. This is why it is generally considered to be degenerative

I am asking you to join some Facebook TN groups, go to face-facts.org, go to facingfacialpain.org, go to painnewsnetwork.com, and several other sites to get information and go to a FPA conference as well!! Do not always rely on your own doctors, as they may not have much, if any information about TN.

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Hi, all nerves have a myelin sheath. If they didnā€™t you would have constant pain everywhere. A demyelination of the trigeminal nerve is what causes all cases of TN1. This caused by a blood vessel compressing on the nerve. You are right, some people have blood vessels compressing on the nerve and donā€™t get TN while others do. Please read my response to Woman_with_the_electā€™s posting.

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All neurons are myelinated except c fibres commonly known as pain fibres. The trigeminal point of contact with a blood vessel of ā€˜interestā€™ has some 30% ish of unmyelinated neurons. All central nervous system fibres ARE myelinated. The point at which blood vessels are said to be a problem occur on the area which is outside of the central nervous system, at this point it is a peripheral nerve in which many fibres are unmyelinated.

The peripheral portion of the nerve has an artery within it, why is this not seen to cause degenerative/ erosion problems, after all itā€™s in a more confined space than the outer blood vessel deemed to be the problem surrounded by CSF and as such has room a lot more so than the artery within the nerve.

In a sense Iā€™d love the statement " all TN1 is caused by vascular compression", everyone could be fixed, no failed MVDā€™s which many are.
If I remember correctly some folk have undergone the MVD procedure for the surgeon to declare hmm nothing to be done here, stroked the nerve and the patient has reduced symptoms ( Iā€™d have to check that one).

You make too broad a statement, unless, TN1 constitutes you had MVD your symptoms improved hence you had TN1, due to vascular compression. Even this ignores additional factors.