Got my MRI results, and it made me want to kill myself - for all the wrong reasons!

So I got my MRI results yesterday, from my – ha-ha – neurologist. So far, out of all the medical appointments I've had, this one was the worst. I was in for about three minutes, where she told me "Your MRI is normal, no vascular loops, nothing wrong" and that was it – dismissed. No discussion of options. She never even mentioned that there may be a vascular loop that hasn't shown up on the MRI – this being the norm, from what I've read. There was no discussion at all. It was like the MRI is normal, let's get to the drugs, because there's nothing else for you.

Actually, it wasn't even that. There was no real communication or explanation at all. If I hadn't educated myself about this condition I'd have thought it was all over for me. However, we then had an equally unenlightening conversation about the Lamotrigine she had prescribed me last time, which turned out to be a (side effect) disaster. She prescribed me Gabapentin to replace it, which is what I had been going to ask my doctor for anyway, and then we had probably one of the most ridiculous conversations I've ever had with a 'consultant':

To put it in context, before this moment all we had discussed was the migraines that Lamotrigine had given me. Once that was done I got out my sheet of paper to see what I wanted to ask her. She saw it and pre-empted me, obviously keen to be off: "Do you have a question for me?" Yes, says, I, and brought up the MVD operation, and how much would I have to suffer before I qualified on the NHS to get it? She gave me one of her special condescending smiles and said "You won't get an MVD for headaches; they wouldn't consider it debilitating enough".

Eh, what? thinks I. But she's off on a tangent about headaches really being debilitating, of course, but not as far as surgeons were concerned, talking more to the two students who were sitting in than to me, so I correct her, saying, "No, I was talking about my TN. In case I have a problem getting meds to fix this (given said problems with Lamotrigine and higher doses of Tegretol that I've been having), how would I qualify for an MVD operation?" She shakes her head, smiling her smug I-know-better smile, and just says, "Good luck with that." And she just keeps saying it, interspersing it with "I can give you a leaflet if you like". I eventually wrung out of her some vague idea of how I would have to go about applying for an MVD, which really boiled down to I'd be relying on her to sell it to the surgeons. This from a woman who has just repeatedly said "Good luck with that."

After more of this, I gave up. I didn't bother asking her about the B12 deficiency I'd been going to discuss; I'd had quite enough of her stone-wall attitude. And, lest you were wondering, I was the only person in the waiting room. She had no other patients after me, so it wasn't because she was harassed or running late. I've only seen her twice and both times she's pooh-poohed me or laughed at my questions. Exceptionally annoying.

So now I don't want to see her again. She gets paid £100,000 to do that job (just over $200,000 a year), and this incoherent patronising rubbish is the best she can do? I don't think so. She actually wrote on the scribbled note she gave me "Impression: Trigeminal neuralgia, migraine – without cure." We already knew it was TN, she has never said to me it was incurable, and I wasn't seeing her for migraines. We'd already established that they were almost certainly a side effect of Lamotrigine. But the "without cure"? I already knew that, fortunately, but it still depressed me dreadfully, especially given her attitude. But imagine if I hadn't known that. As far as she knew I didn't, and she had certainly never told me – can you imagine that was the way you found out you had an incurable disease.

At the moment I am thinking of complaining about her. But I don't know how I stand as regards demanding to see someone else. Here in the UK we can get a different GP and a second opinion, if we don't like the first, but I'm not sure how it goes with specialists, since they're thinner on the ground. But if this is the NHS's idea of a specialist, I am frankly better off taking my chances with a GP. Absolutely sick of the whole show.

Just to make this doubly insulting, by the way, I walked for two hours to get to the hospital, dreadfully nauseous and in pain the whole way, after 6 weeks of non-stop pain/nausea from these bloody migraines, because I couldn't trust going on the bus to see her due to motion sickness/potential vomiting. And then a three minute interview like this is my 'reward'? I felt like she'd slapped me in the face. Bear in mind too, that I had to wait three months to see her holiness. It's just not on. (How British do I sound right now?)

Well, just had to get that off my chest. If anybody in the UK knows how I stand as regards requesting a different neurologist, I'd be really grateful to hear from you. One of the things that's wrong with the NHS is they've never lost that secret cabal approach to medicine – it's almost impossible to know how it works unless you're an insider! So you don't have the first clue of what you are entitled to and what you're not. So anyone who's more versed on the ladder of NHS hospital/specialist secrets – I'd love to hear from you. Thanks!


Wow, that really makes me angry. It doesn't sound like she treats many patients who have TN. You should have taken your copy of "Striking Back" and struck her with it! (LOL) I know, not a laughing matter. Perhaps you should have turned to the students and said, "Take note, this is how NOT to treat a patient."

I sure hope that you can find another doctor who cares and who can help you. I'm seething just thinking about how you were treated. I'm sending you a long-distance hug and prayers for better days ahead for you!

Thanks for the sympathy, Jasmine, I appreciate it. I've felt right from the outset that she only knows basic textbook stuff about TN, and she'd read it's incurable so she's written it out of her 'interesting conditions' spectrum. When I was first sent to her I looked her up on the hospital website (doing my homework, which is more, I suspect, than she does) and discovered she was a headache specialist. Maybe that was why she switched into headache mode so spectacularly and irrelevantly when I mentioned the MVD. Just itching to show off to the students.

But you are absolutely right, thumping her with a heavy tome and shaming her in front of her students might have been more effective.

Jasmine said:

Wow, that really makes me angry. It doesn't sound like she treats many patients who have TN. You should have taken your copy of "Striking Back" and struck her with it! (LOL) I know, not a laughing matter. Perhaps you should have turned to the students and said, "Take note, this is how NOT to treat a patient."

I sure hope that you can find another doctor who cares and who can help you. I'm seething just thinking about how you were treated. I'm sending you a long-distance hug and prayers for better days ahead for you!

Time to find a new doctor I do not know how it works in the UK put just ask her for a referral to a neurosurgeon and discuss it with him I went and he told me that the compression was obvious and all the other neruologist did not tell me that Neurologist are only people to diganosis it and push pills they never want to discuss surgery it is a waste of time to talk to them about it just go see a surgeon sorry for all they typing mistakes My vision is really blured from the meds good luck I went through 3 neurologist before I found one I liked and I do not even like that much but he listen and gives me the right meds God Bless hope it gets better

I know that this doesn't help you one little bit, but I would like to present you with the award for the best posts ever in the history of ever. Ever. If whacking her with books doesn't work you can always talk her into submission I'm sure. As long as the migraine let's off long enough for you to fire up, that is.

I hope you also posted this on the UK group!

Back to square one.

Yes...get a surgeon
TN with MVD does not cure,,,, but can give you yearsssss of remission!

So yes the witch
was right....incurable.....

So she is a waste of human flesh

There is one small paragraph perhaps about TN
IN THE WHOLE darn med school training....


Thats why we are here!

Give yourself a few days
Then get ready to start the battle again!

Im going to make sure two very knowlegable moderators see this , and reply to you!

It is very disheartening to think that there are some in the medical profession who treat patients without any compassion or choose not to be helpful. I honestly believe there are some neurologists who do not “specialize” in dealing with TN but other brain disorders they understand. I had one such neuro who when I showed her the Striking Back book by Dr Casey simply stated “that is out of date”. I think because we have learned the knowledge of a field in medicine they just DO NOT a LISTEN. And think we are a bit loony. Find yourself another neuro or if you can get your family doctor to see if you can be sent directly to a neurosurgeon for their opinion. It is worth a try.
Please do not give up hope in your search.
Chippy

Hahaha!!!! You're so right, Catwoman! That was a tremendously entertaining post, Woman with electric teeth! Not that it diminishes what you went through, by any means. I, too, am getting dismissive treatment. And because I don't have insurance, I can't get the diagnostic or potential surgical help that I need. But you should consider writing as a career, if you aren't already a writer. You've got chops!

catwoman said:

I know that this doesn't help you one little bit, but I would like to present you with the award for the best posts ever in the history of ever. Ever. If whacking her with books doesn't work you can always talk her into submission I'm sure. As long as the migraine let's off long enough for you to fire up, that is.

I don't know what the process is for lodging a complaint with NHS concerning a practitioner who has mis-treated and abused you. But you should be able to find out by asking to speak with a patient ombudsman at your local hospital.

Meantime, you need to find a competent practitioner. A couple of ways to do that: (a) look through the doctor listings under the "doctors /Find a Doctor" sub-tab in our menu above, or (b) contact the UK TN Association to request physician names for neurology consultants in your area. If you were near London, I would recommend Joanna Zacriewska. I've known her casually for over 15 years, and she is a member of the Medical Advisory Board of the US TN Association. I've heard from patients that she can be a bit of a cold fish in patient consultations, but she's very competent and has published prominently in this field of neurology.

A third step -- strictly optional -- might be to print out the TN Fact Sheet from US National Institutes of Neurological Disorder and Stroke, and mail it to the idiot who saw you for three minutes and wrote you off. The fact sheet is linked from our main page. In fairness I should acknowledge that I wrote the most recent release and coordinated it with practitioners external to NINDS before it went live to the public.

Feel free to friend me and get back by site email with additional questions.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

Now that's what I call fighing back..Blessed no matter what and Red!!!!! :) Hang in there...fight the good fight!! Don't let TN win and don't let it bring you down. . . . .Never give up, never give in. Amen.

Hi Kat, many thanks for your reply. You've no idea how helpful it was. I am almost ashamed to admit that, but believe it or not it hadn't occurred to me that of course my neurologist isn't a neurosurgeon and then I realised that my GP had been able to refer me to a gastroenterology surgeon when I had suffered with gallstones so he will, presumably, have no problem referring me to a neurosurgeon (I hope!), in which case I can avoid this b**ch entirely. (Excuse the female pejorative but I still feel really angry at her; I'm trying to work it out my system!)

So thank you for giving me the clarity I'd lost in my moment of anger and pain. I'd like to think I'd have got there myself, but you never know! It's the great thing about sites like this one, the amazing insights you get even at moments you don't expect them or aren't looking for them. Thanks again.

P.S. Don't worry about your spelling. I have to do spellcheck with every entry and sometimes sit staring blankly at the computer because the simplest word eludes me (including the word elude, which I couldn't remember!). I call these anti-convulsants we all take 'the stupid drugs'; they drop your IQ overnight.

E.T.A. Just realised after posting this that it's a gastric surgeon (I couldn't remember the name for those either). See what I mean? The stupid drug.
KATTHOMPSON4 said:

Time to find a new doctor I do not know how it works in the UK put just ask her for a referral to a neurosurgeon and discuss it with him I went and he told me that the compression was obvious and all the other neruologist did not tell me that Neurologist are only people to diganosis it and push pills they never want to discuss surgery it is a waste of time to talk to them about it just go see a surgeon sorry for all they typing mistakes My vision is really blured from the meds good luck I went through 3 neurologist before I found one I liked and I do not even like that much but he listen and gives me the right meds God Bless hope it gets better

Awwwwwwwww Catwoman, I'm touched. Thank you. I accept this award most humbly. But you're right, both times I've come home deeply regretting that I didn't speak up in situ. The trouble is, on both trips I was very sick. First time I'd gone by bus and got bad motion sickness (due to tablets), so second time, like I said, I walked, for two whole bloody hours, feeling unbelievably nauseous and having to keep resting and doing ridiculous breathing exercises. Didn't help though. I felt as bad at the second visit as I did at the first, so she got away with murder. As a sick person, not functioning too well anyway on crappy drugs that impair your thinking, they have the advantage over you. Not only that, but when doctors come out with tripe like this it always kind of hits you out of left field. I mean, you expect them to be intelligent enough to actually know why you're visiting them, or to be vaguely familiar with the operations and options available for the condition they are allegedly treating.

Ah, my naivety may kill me yet......

catwoman said:

I know that this doesn’t help you one little bit, but I would like to present you with the award for the best posts ever in the history of ever. Ever. If whacking her with books doesn’t work you can always talk her into submission I’m sure. As long as the migraine let’s off long enough for you to fire up, that is.

Thanks, Kc. I haven't put it on the UK site, no, but I will do. As for the MVD, I know what you're saying, that's why it was bringing it up, because it's the nearest thing to a cure we've got, but honestly you'd think I'd suggested they line my head with pixie gold and chant incantations. Her reaction was a kind of not so subtle, 'That's not for the likes of you, why are you even bothering, you silly little woman?' with a 'That's not my area of expertise, go and bother someone else.' Unbelievable.

Anyway, I've decided to put a formal complaint in against her. Having cooled down now I realise that I could never go back to her, even if I was dying. I don't trust her and I don't like her, so I have nothing to lose even if they refuse to let me see someone else. I'm not even sure a neurologist could offer much more help to me anyway. Personally, I doubt if complaining makes much impression on these 'God Complex' doctors - but hey, if someone doesn't complain they just get worse and worse, unbridled. Just the act of being hauled up for a talking to unnerves them a little - even if it just upsets their ego. I might at least spare one or two poor souls her idiocy for a week or two, till she reverts back to her normal bad behaviour! Better than stewing on it for the rest of my life, bemoaning the fact that 'I should have complained about her.'

Kc Dancer Kc said:

I hope you also posted this on the UK group!

Back to square one.

Yes…get a surgeon
TN with MVD does not cure, but can give you yearsssss of remission!

So yes the witch
was right…incurable…

So she is a waste of human flesh

There is one small paragraph perhaps about TN
IN THE WHOLE darn med school training…

Thats why we are here!

Give yourself a few days
Then get ready to start the battle again!

Im going to make sure two very knowlegable moderators see this , and reply to you!

I couldn't agree more, Chippy. A lot of doctors, particularly consultants, I've found, have tremendously large egos tied up in their professional identities. They feel vey threatened if you come in with superior knowledge, or indeed sometimes any knowledge. I sometimes get very resentful of this pussy-footing around them and want to yell, 'Can you just be a grown-up for five minutes? This my life here!'

Kat had already suggested to me I skip the neurologist and go straight to neurosurgeon - a fact which hadn't even occurred to me, I'm ashamed to say. I'm going to blame it on mental confusion from drugs and pain! But I thank you for that - it's an invaluable suggestion. I am keeping the surgery route in the back of my head if I can't get meds to work for me. I figure if I try loads of meds to no great success it will actually stand me in good stead anyway, because it will give me just cause, as it were - 'we've tried all the meds, they don't work, she needs surgery'. So hopefully my strategy is a win-win situation. Anyway, I have plan - and I'm going to complain about the consultant, so life will carry on. Chippy said:

It is very disheartening to think that there are some in the medical profession who treat patients without any compassion or choose not to be helpful. I honestly believe there are some neurologists who do not "specialize" in dealing with TN but other brain disorders they understand. I had one such neuro who when I showed her the Striking Back book by Dr Casey simply stated "that is out of date". I think because we have learned the knowledge of a field in medicine they just DO NOT a LISTEN. And think we are a bit loony. Find yourself another neuro or if you can get your family doctor to see if you can be sent directly to a neurosurgeon for their opinion. It is worth a try. Please do not give up hope in your search. Chippy

Many thanks, Red, I appreciate that advice. I have already decided to lodge a formal complaint about her. I figure I will never go see her again, even if the NHS refuses me treatment other than her, so what do I have to lose? It would bother me morally and psychologically for the rest of my life if I didn't let someone know the way she is behaving, so I'll have to just bite the bullet and risk being unpopular.

I have heard of Joanna Z's role in the field, but I can't see me being allowed to consult with her or use her, not even for surgery. (Actually, I don't think she is a neurosurgeon, is she? Just a consultant, I think.) As I'm in Scotland, I'm actually under a different branch of the NHS and as we are about to vote in a referendum and may be declared an independent country that would make my chances less than nil!

No, I think the advice I've received on here, to skip the neurology division and go straight to neurosurgery as and when I feel I need it, might be the right way to go. From my albeit limited experience, the neurologists actually know less than my GP. Certainly less than my GP and me combined, so I don't think they're adding anything to the mix. Disappointing but true.

I shall definitely friend you - and thanks for the kind offer of email advice, I appreciate it.

Yours, Chancery

Richard A. "Red" Lawhern said:

I don't know what the process is for lodging a complaint with NHS concerning a practitioner who has mis-treated and abused you. But you should be able to find out by asking to speak with a patient ombudsman at your local hospital.

Meantime, you need to find a competent practitioner. A couple of ways to do that: (a) look through the doctor listings under the “doctors /Find a Doctor” sub-tab in our menu above, or (b) contact the UK TN Association to request physician names for neurology consultants in your area. If you were near London, I would recommend Joanna Zacriewska. I’ve known her casually for over 15 years, and she is a member of the Medical Advisory Board of the US TN Association. I’ve heard from patients that she can be a bit of a cold fish in patient consultations, but she’s very competent and has published prominently in this field of neurology.

A third step – strictly optional – might be to print out the TN Fact Sheet from US National Institutes of Neurological Disorder and Stroke, and mail it to the idiot who saw you for three minutes and wrote you off. The fact sheet is linked from our main page. In fairness I should acknowledge that I wrote the most recent release and coordinated it with practitioners external to NINDS before it went live to the public.

Feel free to friend me and get back by site email with additional questions.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

Remember that a surgeon usually does not perscribe the pills it will have to be a neurologist or your GP Good Luck I hope you can try a different neurologist and find a good surgeon.