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Living With Facial Pain

TN Diagnosis but I Disagree


#21

hlt069,

Maybe ask your mate richard/ red if he is actually up to date on his info, hey he maybe. Dandy who first proposed the vascular theory wasn’t even aware of the cervical- trigeminal nucleus at the time, an area in which the DREZ procedure for TN was performed, with positive results in symptoms but rather worrying side effects. This would suggest this nucleus has a possible role, but why investigate it? it doesn’t pay porche payments.


#22

I am fully aware of DREZ and the trigeminal nucleus, this is a cause for TN2, not TN1. Plus, I have investigated it and asked neurosurgeons about it. In addition, I had a friend have the procedure done at Duke University.


#23

I must apologize to you. I have done some more research regarding our conversation and I came across an article talking about the different types of TN using the Burchiel scale. This is the only article covering this because of the rarity of this happening in the TN community. The Burchiel scale says TN has a type 1, type 2a, and type 2b. Type 1 we are all aware of, however type 2b is what many call ATN or type 2 (usually). Type 2a is the type you are talking about where type 1 graduates to more of a type 2 constant type of pain. Surgery is of course more successful in type 1 and least successful and usually not recommended for type 2b. Type 2a is less successful than type 1, but more successful than type 2b. I once again apologize and I also thank you for energizing me to find this out. <3


#24

No problem, hlt, nothing to apologise for - there will always be ‘lively debates’ over what causes TN, until someone gets something definitive. As Aiculsamoth says in her comments it would be great if we could assert definitively about the cause/s of TN but we just can’t. No matter how esteemed the neurologist, s/he is still best guessing. When it comes to nerves there is still huge areas of ignorance. They only recently discovered that cells in the gut actually have their own nervous system which can create neurons. Previously they weren’t believed to be able to do this. So it truly is the ‘second brain’ capable of effectively creating itself without assistance from the ‘real’ brain. When you think about it, nerves and blood vessels must, by necessity, cross over and touch all the time, so technically everybody should develop nerve pain with age as the collagen weakens in the blood vessels and the myelin sheath deteriorates. The fact that this doesn’t happen shows you that there is obviously other factors at play - be they genetic or environmental, no-one knows. Someday we’ll probably know, but we’ll probably all be long dead before that!

P.S. Just to throw extra ‘expert’ wisdom into the mix. Two esteemed neurologists both told me that no-one knew what causes the disease and that there is no cure for it. The chief consultant neurologist at my Edinburgh hospital believes that surgery is simply the last resort, not because it works, per se, but because it’s all that’s left! None of them knew of a cause of TN and both the neurologists and the radiologist who did my MRI said that compressions, or the absence of compressions, “proved nothing”!


#25

I was told the same thing – no one knows the root cause, there is no cure, and surgery is simply the last resort with no real hope of it working, it’s the last resort and a “hail-mary-pass” in the hopes it might do something when nothing else has worked.

Personally, all my tests have come back “negative,” that is, “normal.” But I have ATN and neurologically complicated migraines for no apparent reason.


#26

I keep thinking neck may be the cause of ATN pain.
When I think back all my pain seems to be related to when I have had to have my neck back in an uncomfortable position-and being knocked out some of the time.
I wish I could do something to prove that to be the case.
like looking at nerve signals when the neck is so extended.


#27

Ellen,
Not to re-hash my whole story (would be nice if we all had a button on our name that gives a brief synopsis of our issue and how it came about), but I have a compression shown on a FIESTA MRI. Dr. Jeffrey Brown of NYU and Dr. Mark McLaughlin of Princeton Brain and Spine say TN - “doesn’t matter what kind - you have TN - let’s keep MVD in our back pocket if and when you want to throw yourself in front of a bus from the pain.” That was a great day leaving NYU alone sobbing all the way home for three hours. Two neurologists disagree. One says migraines, the other a very vague atypical face pain OR cervicogenic headaches. Since mine started with a mild toothache that worsened after extraction, I’m less likely to believe it is cervicogenic in nature. A TMJ appliance helped a lot in addition to meds. And I notice that if I’m in bed (my pillow is flat) and I look down to watch TV (chin more towards chest), I get shocks in my chin. If I’m having a bad face pain day (ear ache, occipital pain, maxillary pain, boring pain in temple) my neck is always tight.

I look at it this way - suppose we had arthritis in our back. When we spend a day lifting, it hurts. The lifting isn’t the cause, it’s an aggravator of a condition that already existed. Maybe the aggravation of the trigeminal nerve (regardless of whether it’s original form is TN1, TN2a, TN2b caused by bad dental work, unlucky genetics, trauma) is enough that extending our necks, lifting furniture, etc. is enough to start symptoms. A lot of people who have back pain can point to the one day in time they herniated a disc. And many more can’t trace it back to anything specific.

After two years of searching for a “cause” of my TN/ATN/TN2 - whatever it is, I’m just focused on not aggravating it and keeping it at bay. Dr. Jeffrey Brown says “anything can tickle the trigeminal nerve awake in a wrong way - that includes dental work.” It really is an extension of the spinal column. This whole experience has been the most frustrating issue in my life so far.

Melanie


#28

One more thing - why does TN1 come and go? If the nerve is truly demyelinated it would hurt constantly, right? Something has to be triggering it back on. When you look at back pain, it’s the same way. On and off, again and again and again.


#29

I heard about the gut neurons, too and that is very interesting. They just found the genome for the trigeminal nerve and are now recruiting volunteers for a second, more extensive study to confirm this about TN1. For info on that you would have to go to the facingfacialpain.org site.
I don’t know how you feel about this, but in my opinion, finding better drugs is essential. However, there are so many different causes and areas of where TN occurs, that more and better surgical techniques (both invasive and non invasive) need to be looked at. I have a neurostimulator that works well for my ATN. That is because we know where it is and what caused it. I had no other surgical options because of the area where it is (the ganglion behind the left eye and to the brain stem). I was told that I had a 70% chance or higher, of stroke, brain damage turning me into a mental vegetable, or death. I know of two cases in which people took this surgery (MVD). One male I had heard from articles had become mentally incapacitated and needs help to take care of him. The second, is a personal friend of mine who suffered at first with immense CSF leakage, blackouts, loss of some bodily functions and now has severe epilepsy. Others that I have heard of, I think three, had died.
Scary and I am glad that I didn’t do it. You take care and have a great evening!!


#30

I wish that I had an answer for you Meldaver. It is very odd that this happens. I have asked doctors and for the most part, none of them knew why. A couple had theories, but they weren’t sure about them. It could be diet, maybe the blood vessel, lesion, or whatever. In regards to diet, maybe something you have switched to eating might have strengthened the opioid receptors in your brain to send out more endorphins, lowered your cranial blood pressure, etc. Who knows? We need more and better research. If our governments would better fund research projects on pain research, instead of on things like eczema, psoriasis, acne, etc., we might get better answers.


#31

Ellen & Meldaver - that is really strange because with the recurrence of my TN came 3 new triggers 1) smell - I thought I was imagining that but I still get some sensitivity if someone (usually men, ironically) has fresh/strong scent (it hates body sprays in particular) 2) vibration, and 3) the most peculiar of all, tilting my head right back. I only noticed this because I was decorating when my TN first came back and it was at its worst, with shocks each day, although less of them and lower grade than before (it’s either settled a bit again or the low dose of Oxcarbazepine I’m taking is working) . Again, I thought I was imagining it, but I realised it was definitely happening. If I was working up at the ceiling and my head was right back touching my shoulders, as it were, I’d get a strange numb tingling and the odd shock in my lower chin. I haven’t had it in a while but that’s probably because I don’t normally bend my head right back!

Coincidentally - or maybe not - I get a stiff neck with migraine - it’s one of my warning signs.


#32

I just am so ticked at doctors who say definitively that TN is this or that.Especially this atypical.It is atypical because they do not know what it is .Would make me feel better to call it mystery TN-I would have started thinking about other causes of the pain.I never could smell things before-now certain food smells just turn me off.I used to have a sweet tooth-now i cannot stand sweet.And bread is so yucky.
I do not know how I live.
second hand juicer and Boost protein drinks.
I wish we could all get together and brainstorm this once and for all.


#33

Hlt, couldn’t agree more about the drugs. Until they can find the cause and, hopefully, therefore a cure of some sort, we’re stuck with the drugs, so something that didn’t knock out the whole nervous system (not to mention mess with your blood etc) would be a huge improvement.

As for MVD, I also agree with you on that one. Just reading the list of potential side effects was enough to put me off. I think it’s great that it’s there for people who have hit the end of the road - at least it gives them somewhere else to go, but as far as I am concerned it’s still brain surgery. I recently had the same chief consultant neurologist recommend me going down the surgery route because Carbamazepine gives me so many adverse side effects and my B12 injections are not managing it completely any more, but I was pleased that even my doctor thought he was nuts. She said, and I quote “I don’t blame you. I wouldn’t be keen on brain surgery either”. She wasn’t going to say it out loud and disrespect her ‘better’ but her expression said it all!

P.S. I definitely believe the myelin sheath is part of the problem - you only have to look at MS, the only disease, to my knowledge, that has TN as one of its symptoms. I also believe in the demyelination theory from my own experience. I’d had bad TN, full classic with shocks all day long for virtually anything, before I strong-armed my doctor into giving me B12 injections, and they put me into remission within 3 weeks. I believe due to myelin sheath repair. Unfortunately it hasn’t lasted but the fact that my TN now is a paler version of the original testifies to how much repair my body was able to do with adequate B12. It’s a shame the cause (in my opinion a completely non-functional gallbladder for a year and a half coupled with a very low fat diet) was not highlighted to me at the time. Doctors all know - or they should - that the gallbladder plays a role in B12 absorption but not one of them, including consultants, ever warned me that I was running a serious danger of becoming very B12 deficient. Ironic, and potentially tragic, to think that if I’d even taken a cheap OTC B12 supplement I might never have got TN, or at least not got it till I was much older!


#34

You know, Ellen, I actually think you’re right with the idea of getting together. Can you imagine how potentially useful it would be if they did a really big questionnaire then fed all the data into a super-computer? It would almost certainly show repeat patterns, cross-over triggers, similarities in medical history (my money would be on gallstones, obesity, poor insulin control and possibly issues with cholesterol, just for starters!) and possibly even genetic similarities.

One I’ve always wondered about, for example, is depression. Do TN sufferers suffer with depression because of their TN or did they have a susceptibility to depression beforehand? Researchers know how badly depression can impact the body, and people often use self-medicating behaviours like eating or drinking to try and deal with it. Perhaps that environemntal factor (either the food itself or bad/over eating) triggers it in people with a genetic susceptibility. I’d do a poll on whether there are an abnormally high number of depressives amongst TN sufferers but people might not want to ‘confess’ to being depressed (or might not realise they are) and also it’s the chicken and the egg thing - is the TN causing the depression or vice versa? But it’s a thought that more women than men suffer from depression and more women than men suffer with TN (don’t they? - I’m sure I read that somewhere!)

Unfortunately though it would very time-consuming and costly to do such a study and no pharmaceutical company would put money behind it unless they knew there was a profitable drug to made from it. What we need is some university to take up the idea and run with it!


#35

Were you doing anything with your neck back before it returned?
I know partner issues-but nothing with your neck,right?
I know the time before this,when I went for sleep dentistry one of the
teeth on the other side of my face was brutal afterwards and I had it taken
out and no more problem.So never had to search like this.
This time when I had the sleep dentistry a tooth on the opposite side was
brutal.Had it pulled-but then the next tooth got sore-had it pulled.And the
next one got sore.
Had to stop pulling them.
But the neck thing makes sense to me.And it explains why opposite sides.
I wish I could have an MRI while i was moving around to see whether the
nerve is impacted.
And no one wants to do a nerve conduction study.
Glad that the med is working-or glad something is working.
I might need to go get a spell put on me.Work as well as the doctors I am
starting to think.


#36

I’m of the same opinion, demyelinated quite possibly constant pain, or at least very regular pain, why come and go. Posture affecting TN especially tilting your head backwards- compresses the facet joints more so if your discs are narrow and hence can cause ‘confusion’ at the trigeminal nucleus residing in the neck.

Hlt069, please don’t perpetuate the myth that TN1 (or what ever ridiculous diagnosis is put to it) is caused solely by vascular compression, especially when you mention the surgical procedures with poor outcomes.

I’m actually a little pissed off, your original statement, was hey everyone with TN has MVC, and then now you state how your friends have been royally f**cked up, not to mention the other folk you heard of . You take care and have a great evening!! Are you for real, you make a statement far from the truth, and then fill us in on this information. On advice from your neuro/ pharmacist maybe- forget it ( can’t be bothered). Shit glad I didn’t do it, don’t you think you might have mentioned this a couple of posts ago. And now you concede maybe diet etc… blah blah might be a factor, so what your conceding vascular compression might not be the only factor? Now there’s a surprise!

I realise your intent is meant to help, but I reckon it’s having the opposite desire.
Sorry but really annoyed.


#37

Oh, forgot to add, I think coeliac disease and Non-coeliac gluten sensitivity are another couple of potential culprits for TN. Coeliac disease can cause very bad neurological problems as severe as insanity and paralysis (which is generally thought to be because the body isn’t getting B12 - there’s that B12 again!). I have actually read one bona fide specialist (not alternative health) doctor who believes that Alzheimer’s and MS like symptoms are the result of coeliac disease and NCGS going undiagnosed. He reckons that people with problems digesting gluten literally get brain damage. I have a suspicion he might be right, and I wouldn’t be at all surprised if it’s discovered that TN is triggered by gluten sensitivity when we’re all in our dotage!


#38

Reckon Woman-with-electric teeth is on to something, not saying the cause of all stated, but it a lot of instances gluten/wheat exacerbates inflammation.


#39

No, nothing weird with my neck, Ellen, other than the fact I was tilting it at some very severe angles. And a spell would be perfect. If only Dumbledore or Harry Potter were real people we’d all be sorted. I can just see it now, going to our local wizard to be zapped by a wand while he shouts “EXPELLUS TRIGMINALIS!” Ah, we can only dream…


#40

I think you might be on to something with the super computer.
i wonder if the Bill and Melinda(?}Gates Foundation would put up some
bucks for a university to do the study.?
I wonder how we go about doing this?
And Ya-if a pharmaceutical company thought they could sell more
anti-depressants they would be there ,no questions asked