Today I had my second visit to Maxillofacial, I left more confused than ever before.
I'm not sure if I understood him correctly, or even if he understood me, but I felt like I was wasting my time.
He asked several questions regarding my symptoms, he then tells me I don't have TN, he says I have ATN.
He then tells me that I should not be having all 3 nerve branches live with pain, tells me this is very rare.
Then he tells me that I shouldn't be suffering pain on both-sides, again! he tells me this is very rare.
He also said that TN / ATN is not dental related.
He said there is no TN TYPE 2, only the regular electric shocks of TN. He said if you don't suffer the electric shocks, then you have ATN. I told him that I also suffer the electric shocks during the constant aching, crushing, burning pain of TYPE 2... he says No! No! No!
He tells me I am a rare case, he says he can only treat me with more medication such as Tegretol and Gabapentin. He says my condition isn't nerve compression, its ATN. He tells me that I will have to live on medication for the rest of my life, there is nothing else he can do.
Thats the UK NHS system for you. :(
Hi Dallas, I don't think you are especially rare, because many sufferers on here seem to be cursed with both ATN and TN; that's why they are here! So you maybe need to put him straight on that one. That said, he is telling you the truth up to a point, in that they don't do ops on ATN on the NHS. On the other hand, if you are getting the shocks then you are entitled to be treated as a TN1 patient and that means get an MRI to see if there are any vascular compressions. He can't possibly tell that by looking, so you can ask for a referral for an MRI. That might help, if they find one. If not, it could be trickier. I'm in that position myself right now: MRI found no compressions so neurologist just went back to prescriptions, but I put a formal complaint in about her, so I'm waiting for (hopefully) a new neurologist. But I haven't decided myself if I want to go for an operation so I'm not pushing one way or another myself. Both options have pluses and minuses.
All that said, perhaps what you really need here is a second opinion, which you are actually entitled to ask for by The Patient Rights Charter, so there should be no problem getting one. But why not ask for a referral for an MRI first? Or go into your second opinion doctor with that as your agenda?
You really only have two options here - medications or operations, so you need to decide which you want and go for it.
I had an MRI back in 2010 at my first Maxillofacial appointment, results did not show any problems.
Today! We spoke about doing another MRI, the specialist didn't think it would be worth it as he felt the results would come back the same.
He said ATN is a chronic condition and medication is the only help. :(
I have been thinking about asking for a second opinion, but you just get pigeonholed as being a trouble maker/nuisance. I have contacted the NHS complaints line before, I was made to feel like I was at fault, they offer no help or support at all.
Ah, so you're in the same place as me, only you've been stuck in it longer. I know you don't like the medications, so why don't you push for an operation? Have you decided which one you want yet? I've never considered anything other than the MVD, but there might be more likelihood (or use) from one of the others for ATN. I imagine some of the ATN sufferers on here could tell you.
AS for the second opinion - who cares if they think you are a troublemaker? Let me tell you, from research studies, and from seeing it myself first-hand from when I was in hospital (different complaint), the people who complain loudest are the ones who get the best treatment. I know it feels counter-intuitive but it's true. The secret is to be polite but insistent, and it's very important to know what you want (and preferably your legal standing) before you start. But it's a case of what have you got to lose?
I felt very reluctant to start proceedings against my neurologist, but the more I thought about it the more I realised I was backed into a corner. If I didn't complain, I would have to go on seeing her, and I know me, I would have just cancelled the appointments, so I had nothing to lose there. I considered complaining to her, and even wrote a letter to her, and then realised that given her faults it would make no difference, so I was left with formal complaint - so I made one. Without it I would have no grounds to get a different neurologist. It's ironic, but they back you into the position themselves!
But certainly 4 years have passed since your last MRI, of course something could have moved/worsened since then. But I'd use it as an opportunity to demand a thin slice MRI. I forget the name of these, but I can find it for you if you want it. You're in England, aren't you? So you can request to be sent to a hospital that does these. You actually can fight for this on the grounds of excessive long-term suffering (I'm assuming you are?)
It might also be an idea to ask around on here and see if someone can recommend a neurologist/neurosurgeon who might be more sympathetic to you getting a better MRI. But all of this is jumping the gun, what do you actually want from the NHS? If you don't know that, you're stymied before you start.
Hands up, everyone with TN1 and 2, plus bilateral and all 6 branches affected. Yes, we do exist. I am sure it is rare, but it is also possible. And I am under 40. I am sure he would tell me off. 
I had a one off (!!!) appointment with a neuro recently who was convinced my ATN is migraine. He put me on Aspirin and made me quit coffee. Fun stuff. The he volunteered a second appointment. In eight months… Meanwhile, I am supposed to take my aspirin. Needless to say, I started drinking coffee again.
Maybe we should gang up on these docs, they don’t seem to see enough of us. I am hoping my £125 second opinion is going to come through. I am a foreigner, so I didn’t know there was such a thing as a free second opinion. But I really don’t want to wait another 8 months.
Hi Tineline, you absolutely should form a group to seek them out and re-educate them, or failing that, beat them up. God knows there are plenty of poor souls like you on here. I've lost count of the people I've asked which TN they had who've said, "Oh no, I have both TN and TN2". Obviously it's not common in a 'on your street' sense, but it is definitely common enough in global communities like this one, but then these so-called experts don't bother themselves with communities like this one because we are all cranks, aren't we? Yep, desperate cranks, because we are pretty much doing all the research on our own disease because God knows no-one else is.
I especially enjoyed your expert and his migraine suggestion. That in itself seems perfectly valid to me, and definitely worth checking out, but to then follow it with a remedy of aspirin (for migraine? Has he ever actually had a migraine? Aspirin wouldn't tickle it) is just Mickey Mouse madness, and about as reassuring as a tissue-paper bath. They are always at great pains to tell us about the length of time doctors study. What do they actually study during all that time? It's not TN anyway. And apparently not migraine either.
Thank you for all the replies guys, it is very much appreciated.
I have a follow-up appointment with my GP next week, it will be interesting to see what his views are regarding the Maxiillofacial report... I cant wait to read it.
As for Coffee, I don't even drink coffee, I dont even smoke, never have done.
That is what really upsets me the most, I have always tried to look after myself, do the correct things, healthy diet etc, and! ...... SMASH! BANG! WALLOP! here you go! ... have TN. :(
Oh, at the risk of sounding all American, I hear you, man. This is one I really sympathise with. In fact, I had been thinking of writing a post on this subject because I was curious as to how many folk on here felt like I do. It's not exaggerating it to say I suffer the torments of the damned over this one. I hate, hate, HATE not knowing why I have TN. I try everywhere and anywhere just to find a reason for it. I don't mean what's going on in there (although God knows a bit more of that would help too); we kind of know that we've all probably got a vein/artery pressing somewhere it shouldn't, but why did it happen? What did I do to make the myelin sheath wear away and let this happen?
Personally, I don't think it's such a crazy thing to want to know, I mean aside from just putting your mind at rest. After all, it's a degenerative condition, so surely it would help everyone, including all these doctors, if we knew and we could do something about it. That's the bit I can't stand. I've been told it's degenerative, but no-one is giving me any advice to stop it degenerating. Should I give up sugar, run ten miles a day, rest more, stop using toothpaste? What?
It really would help in every way to know why it happened so that I could stop it getting worse, but doctors don't seem to be interested in helping you get to the bottom of it. The most promising thing I've found so far is a B12 connection, but don't get me started on telling you the fun and games I've had trying to get a simple B12 test.
I can only assume I was really awful in a previous life; there's no other explanation for God victimising me like this!
Dallas said:
Thank you for all the replies guys, it is very much appreciated.
I have a follow-up appointment with my GP next week, it will be interesting to see what his views are regarding the Maxiillofacial report… I cant wait to read it.
As for Coffee, I don’t even drink coffee, I dont even smoke, never have done.
That is what really upsets me the most, I have always tried to look after myself, do the correct things, healthy diet etc, and! … SMASH! BANG! WALLOP! here you go! … have TN.
Same here! I have often thought why me, was there something I done to trigger the TN ?
BUT! I always end up thinking of all the dental treatment I had at such a young age, also continued into my teens, 20's and 30's (I'm sure dentistry has caused all my pain or has been the trigger).
My pain is worst when I get stressed, I am also 100% sure OCD makes TN/ATN worst. Its like the chicken and the egg story, OCD makes the TN worst or did TN caused the OCD. It seems my brain never rests, its always live with pain or thinking, analyzing, stressing, I just go round and around...
Does anyone here suffer with OCD, such as placement/objects, thinking/analyzing, fear/worry, repetitive behaviors etc ?
I can be OCD, but I don't have it, no. I can get a bit OCD when I'm anxious, double-checking things and having to have them done my way, but that's only when I'm chronically anxious, like when my dental phobia is in full-swing, for example. But that's rare, as I don't have to go to the dentist very often.
Certainly dentistry didn't cause my TN, since the TN started when I hadn't been to the dentist for at least two years. While worrying about dentistry I'm sure it was worse, but it unfortunately didn't get better as soon as dentistry was out the picture, no. I wish.
I am an anxious person and a worrier, but I don't know how that could, per se, produce a physical ailment. I have read many books that talk about the physical bad effects of stress on the body, such as elevated adrenalin and cortisol levels, and some people think that they can potentially be causing cardiac problems, but I really can't see how they would connect to TN.
Do you have a theory? If so, I'd be really interested to hear it. You don't seem to believe your TN is rooted in a compressed nerve/arterial problem. Do you think your nerve damage is actually along the length of the nerve somewhere, caused by dentistry? I think those kinds of damage 'only' cause ATN, don't they? I could be wrong, but they certainly wouldn't cause myelin sheath damage. Have you ever discussed this with your Maxo guy? If so, how did he respond?
I noticed you were using maxo rather than a neurologist like most of us do. I wondered why. I take it this is the reason, because you feel you don't have a brain problem but a facial nerve damage problem? I know there's at least one other person on here, a moderator, I think, who has TN from nerve damage by dentistry. I can't remember her damn name (these bloody drugs; just started a new one), but I can find it if you want to talk to her.
Dallas said:
Same here! I have often thought why me, was there something I done to trigger the TN ?
BUT! I always end up thinking of all the dental treatment I had at such a young age, also continued into my teens, 20's and 30's (I'm sure dentistry has caused all my pain or has been the trigger).
My pain is worst when I get stressed, I am also 100% sure OCD makes TN/ATN worst. Its like the chicken and the egg story, OCD makes the TN worst or did TN caused the OCD. It seems my brain never rests, its always live with pain or thinking, analyzing, stressing, I just go round and around...
Does anyone here suffer with OCD, such as placement/objects, thinking/analyzing, fear/worry, repetitive behaviors etc ?
I am pretty sure they have a half lecture on TN and migraine combined by this point.
By the way, how does a tissue paper bath work, I haven't tried that yet. =)
Woman with the electric teeth said:
Hi Tineline, you absolutely should form a group to seek them out and re-educate them, or failing that, beat them up. God knows there are plenty of poor souls like you on here. I've lost count of the people I've asked which TN they had who've said, "Oh no, I have both TN and TN2". Obviously it's not common in a 'on your street' sense, but it is definitely common enough in global communities like this one, but then these so-called experts don't bother themselves with communities like this one because we are all cranks, aren't we? Yep, desperate cranks, because we are pretty much doing all the research on our own disease because God knows no-one else is.
I especially enjoyed your expert and his migraine suggestion. That in itself seems perfectly valid to me, and definitely worth checking out, but to then follow it with a remedy of aspirin (for migraine? Has he ever actually had a migraine? Aspirin wouldn't tickle it) is just Mickey Mouse madness, and about as reassuring as a tissue-paper bath. They are always at great pains to tell us about the length of time doctors study. What do they actually study during all that time? It's not TN anyway. And apparently not migraine either.
Yeah, a half lecture which they don't attend because they got drunk the night before, or there is an awfully good offer at Starbucks they just can't miss. And tissue paper baths don't work; they were suggested to me by a doctor who thought aspirin would be effective against migraines.
Oh God, TN has turned me into a cynic...
Tineline said:
I am pretty sure they have a half lecture on TN and migraine combined by this point.
By the way, how does a tissue paper bath work, I haven’t tried that yet. =)
Woman with the electric teeth said:Hi Tineline, you absolutely should form a group to seek them out and re-educate them, or failing that, beat them up. God knows there are plenty of poor souls like you on here. I’ve lost count of the people I’ve asked which TN they had who’ve said, “Oh no, I have both TN and TN2”. Obviously it’s not common in a ‘on your street’ sense, but it is definitely common enough in global communities like this one, but then these so-called experts don’t bother themselves with communities like this one because we are all cranks, aren’t we? Yep, desperate cranks, because we are pretty much doing all the research on our own disease because God knows no-one else is.
I especially enjoyed your expert and his migraine suggestion. That in itself seems perfectly valid to me, and definitely worth checking out, but to then follow it with a remedy of aspirin (for migraine? Has he ever actually had a migraine? Aspirin wouldn’t tickle it) is just Mickey Mouse madness, and about as reassuring as a tissue-paper bath. They are always at great pains to tell us about the length of time doctors study. What do they actually study during all that time? It’s not TN anyway. And apparently not migraine either.
I'm terribly sorry to read what you've been through. Have you thought about asking your GP to refer you to London for consultation? This could make a difference.
Hi Dallas,
Wow you have been through the wars! I realise I was very lucky that when I went to my doctor he was up on TN. Not sure why but he knew right off the bat that I had TN. He told me it was a rare condition. Wow was I lucky then ;)
I noticed you said it is worse when you are stressed and I would agree with that 100%. I'm on 400g of carbagen which seems to work. Oh, BTW for me I think it started not long after I had a root canal done. Maybe the worse days work I ever did or maybe nothing to do with it. Confusing eh?
Whatever the Doc's tell you and whatever is your condition, you DON'T deserve it and it's NOT your fault. Stay as positive as you can. All the best, take care - Colin
Hi Dallas,
To be honest that sounds like virtually every specialist I have seen so far
and I have seen quite a few.
First of they all have different views on what type 1 and type 2 should feel like, although generally similar. Next they all have varied views on how best to treat our condition. I have been given one lot of medication only for the next neurologist or so on to take me of it and put me on something else.
One such person gave me a certain medication that he told me would help type 1 pain only for the next time I saw him in six months time to be told that he can’t understand why I’m on such medication as it will not help in any way whatsoever.
I too have been told that I am a one off case and that its so rare to have type 1 and 2 and it’s unusual the amount of pain I suffer. I have also been told that our condition causes no ill effects on our eyes in any way.
To be honest I think the medical profession knows so much less than we the sufferers do that I advised the last doctor I saw to do some reading of his own on various forums and he may just learn a thing or two.
He consequently told me he could do no more for me and that upping my medication as time went on will be the only way I will be able to cope with the pain for the rest of my life. The truth is everyone I have seen ultimately comes to the same conclusion. We just have to cope as best as we can through medication for the rest of our lives.
It’s very frustrating in every way we all know but places like this message board which is the first one in the UK I have found probably help in many ways. Knowing that there are others out there who know and understand what we all go through is a godsend. Although I don’t wish this on anybody.
But together we can probably teach each other more than any doctor will ever be able to tell you.
Good luck Dallas and I hope you have many pain free days.
As Colin above says stay positive as much as you can, I do find that having a PMA does help.
Dave
Hi Dave, sorry, just butting in here in answer to your reply to Dallas - don't you think what you are talking about here is the reason why there should be more emphasis on research on the causes of TN, rather than on medication? This drives me nuts, I'll be honest. I totally get why everybody is obsessed with pain control on the forums, but it's like we've all given up on why this happens to us. Nobody seems to care about the whys, especially docs and neurologists, and because of this all the patients just seem to join in. It's a horrible big mess of victim mentality.
Sadly, though, I have no great suggestions to offer, other than the fact I wish more of us could get together and try and discuss cures, not pain control!
Belgy1972 said:
Hi Dallas,
To be honest that sounds like virtually every specialist I have seen so far
and I have seen quite a few.
First of they all have different views on what type 1 and type 2 should feel like, although generally similar. Next they all have varied views on how best to treat our condition. I have been given one lot of medication only for the next neurologist or so on to take me of it and put me on something else.
One such person gave me a certain medication that he told me would help type 1 pain only for the next time I saw him in six months time to be told that he can't understand why I'm on such medication as it will not help in any way whatsoever.
I too have been told that I am a one off case and that its so rare to have type 1 and 2 and it's unusual the amount of pain I suffer. I have also been told that our condition causes no ill effects on our eyes in any way.
To be honest I think the medical profession knows so much less than we the sufferers do that I advised the last doctor I saw to do some reading of his own on various forums and he may just learn a thing or two.
He consequently told me he could do no more for me and that upping my medication as time went on will be the only way I will be able to cope with the pain for the rest of my life. The truth is everyone I have seen ultimately comes to the same conclusion. We just have to cope as best as we can through medication for the rest of our lives.
It's very frustrating in every way we all know but places like this message board which is the first one in the UK I have found probably help in many ways. Knowing that there are others out there who know and understand what we all go through is a godsend. Although I don't wish this on anybody.
But together we can probably teach each other more than any doctor will ever be able to tell you.
Good luck Dallas and I hope you have many pain free days.
As Colin above says stay positive as much as you can, I do find that having a PMA does help.
Dave