1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Saw two neuros different diagnoises which do i follow? HELP

Posted , 5 users are following.

chantell28219
chantell28219

hi guys i really could do with your advice... im in the uk and was diagnoised with trigeminal neauralgia and glossophryngeal neauralgia by my local neurologist who started me on carbamazepine i was already on high doses of lyrica and nortriptyline for migraines which now i feel was the tn all along...anyway i decided to ask my doctor for a second opinion to a professor Zack who is a very specialised in tn so i thought she may have better options for me and maybe a view to surgical options.Well at my appointment she said i did not have tn but tmd??? im in total shock i no my symptoms are being caused by tn....what do i do im devastated a letter will be going to my gp and i dont want my gp to not believe me. I thought she would help me i am in total agony.Do i contact PALS for advice or just not see her again and stay with my origional neuro? My gp wont allow me a third opinion im sure....in the mean time im suffering meds are not controlling symptoms and quality of life is nil! Im devastated any advice would be very grateful thanks

0 likes, 14 replies

14 Replies

  • paula76255
    paula76255 chantell28219

    Posted

    Hi Chantell

    I know who you are speaking of as I have had two appointments with her and was  not impressed. You know what pain you feel (she said to me the TN pain is the shooting electric shocks only) but I have other pains too and have had for 15 years.  Just because this person is a specialist it doesnt mean that she knows more than your neurologist! I saw her last year and last month as I do not want to be on medication (Lyrica disgusting tablet) and the MVD doesnt appeal either. I asked about Botox which is trialled in the USA and supposed to help, but she dismissed this (I had filler to my right cheek last year as that side of my face has dropped and I barely had any pain for weeks and Im convinced the nerve endings were blocked by the filler).  Im trying homeopathic remedies (Magnesium Phos, Kali Phos plus a combination) and and was seen by her homeopathic colleague at UCL who told me that if I were in a "happy" place and smiled more he is sure my TN wouldnt be as bad as it is and should try psychotherapy!  After 20 mins of listening to this rubbish I said to him I came to see him for help and not to be patronised and left!  Just stick with your GP and neurologist (im sure you can have a third, fourth or fifth opinion if you want one?) and dont be fobbed off.  People who have never experienced severe face pain have absolutely no idea how devastating it is.  We all know how you feel. Paulax  

    • chantell28219
      chantell28219 paula76255

      Posted

      hi paula im sitting here in tears and not coping very well at all everything seems hopeless. Im sorry to hear your experences with her were not good either but it confirms to me that she is very dismissive of any type of pains that are not electric shock like in quality. I am thinking of phoning  PALS see if they can help as although ive got the neuro he said he cannot do anymore as such. The neurosurgeon i am waiting to see was of his choice but im also concerned as the prof knows all neurosurgeons not sur if he will no i have seen her...im panicking as i cant live with this pain anymore. My doctor is not the best and a letter saying i have tmd will just make him believe i dont have tn even more so. IM not strong enough to do this anymore im really not. Thanks for your advice Paula xxx
    • paula76255
      paula76255 chantell28219

      Posted

      Morning Chantell

      As you have had TN diagnosed and you have evidence of this from your neurosurgeon I cannot see how your GP will take any notice of a letter from the Professor contradicting a detailed scan?  Ive seen a couple of neurosurgeons and both suggested surgery if the tablets arent helping.  I dont know if you sign up to the TN association UK but they have a helpline 01883 370214 and im sure they can give you more advice. Ask someone to ring for you if you cant speak because of the pain.  Theres lots of research going on (just read that in the US that theyre investigating the use of carbon implants to modify nerve signals and deliver pain medication directly to the nerve tissue).  I saw a Neil Kitchen at UCLH and he is very good and has a good reputation.  Maybe ring his secretary (google for number).  I wish I could do more to help. Things will get better.  Paula x

    • chantell28219
      chantell28219 paula76255

      Posted

      Hi Paula,

      The scans i had from the neurologist showed nothing but because im in so much pain and im already on high doses of meds he has referred me to a neurosurgeon whom i have not seen yet im still waiting for an appointment. So you see i have no proof i have tn and im very frightened as to what is going to happen..i have to hope something is done. Do you mean see Neil KItchen privately? doesnt he work with prof Zak? Have they offered you Mvd? sorry for all the questions do you suffer pain in your sinuses/nasal passage and roof of mouth?

    • paula76255
      paula76255 chantell28219

      Posted

      Hi Chantell, sorry late responding.  Apparently TN doesnt always show up on scans but that doesnt mean you dont have it.  Do you have the electric shock pains, they flick across the upper and lower jaw (teeth area) and can be triggered by opening up the jaw to talk/eat etc?  Once I was unable to swallow as to suck my cheeks in set it off.  Just awful.  Thats when I saw Neil Kitchen.  Yes he does work with the lady you saw but I would like to think that he will draw his own conclusion if you see him.  My private health insurance covered the costs but Im sure he is NHS too? They can do an MRI with contrast if necessary.  Theres the Walton Centre in Liverpool who are supposed to be very good too (sorry dont know whereabouts you live) but research will guide you.  MVD was discussed when I saw him but didnt fancy it and Tegretol put me in A&E with very low sodium so regular blood tests are required.  I have the flicky pain, intense radiating pain or a pain that feels like someone is drilling into my jaw bone with a huge nail.  Just been getting a new pain that goes up to my eyesocket and is unpleasant when I blink!  I get pain too at the roof of my mouth, the right hand side of my tongue and up my nose (sharp pain).  I seem to experience different pain at different locations and I too have completely had enough. I would get help from a family member regarding going to appointments and make sure you arent fobbed off.  Hope the pain has eased off a bit.  Paula x
  • paula76255
    paula76255 chantell28219

    Posted

    Sorry forgot to say that she too said I had TMD (as well as TN) just because I had other pains to the electric shock ones.  Ive had xrays of my jaw and there was nothing to agree with her findings.  Good luck. Paulax
  • alicot
    alicot chantell28219

    Posted

    TN is not to be messed with. It isn't called "the suicide disease" for nothing.  And drugs don't do much for me either. I had to decide I had to find whoever could help me and get off the drugs. Find out who does the surgery for TN. I  had a procedure called radio frequency surgery or something like that where they burn the nerve. It stopped the pain for almost two years and just keep doing it when it comes back. We all hope it won't come back but it often does. The guy who immediately helped me was a neuro surgeon, not the neurologist. The neurologist just wanted me to stay on drugs and wouldn't give me the surgeons name so I found him myself, had the surgery, got off the drugs and got my life back.  Eating isn't always easy but do I care?  Having a doc who can stop the TNis a godsend. Don't let them #%^% with you.  Find the surgeon, do the research on the different surgeries on line and get things lined up ASAP. Unfortunately, you have to do the research to find that surgeon.
    • chantell28219
      chantell28219 alicot

      Posted

      hi alicot thanks for your reply well the neuro i saw has referred me to a neurosurgeon so am waiting to hear for that but im just very upset that this lady completely dismissed the idea i had TN and gave me a different diagnois i thought she would be able to help me..give me options. Im on lyrica nortriptyline and carbamazepine i cannot get higher than 600mg on carb as im so dizzy and feel drunk all the time plus i keep bursting in to tears...she told me to come off of it but everytime i try me symptoms become severe? Im at breaking point living like this is hell i have no life ill have to keep fighting its getting to the point that no one wants to help me and im suffering so much. Thanks so much for your help x
  • alicot
    alicot chantell28219

    Posted

    I totally get it. I was in a similar place. The drugs made me crazy and I knew I had to get off of them ASAP. When I finally got the surgery, I was able to get my life back, slowly. But it took a longer time to get ME back.  I was traumatized by the whole affair as I am sure you are.  I had to get some shrink help to get past the trauma but after a long time of no pain and help on hand for when it returns has finally changed my life to a more normal pace.  This will all happen for you as well.  Surgeon is first, and in the meantime try to make peace with the drug and know that help and healing are on the way.  Getting through any trauma is difficult for us living beings.  I was hanging on by threads too. I really get it. But if I am OK today, you will be too. We just have to accept it and find peace as best we can.  Just know that help is on the way. 
  • angiegirl
    angiegirl chantell28219

    Posted

    Hi Chantelle      Hope you are having a calm evening with not o much pain.

    i also was referred to Prof  Zack and she said I had a lot of things going on so she referred me to Mr Matharu at the UCLH.  Amongst  other things my TN was re diagnose do as SUNA  have you herd of this. It's very similar to TN and the medication is almost the same. There is very little information to be found about it that is not technical.    Well like TN it is awfull and I can't stop worrying and thinking of the pain. I was originally diagnosed in 2005/6.

    sorry to waffle on, I really wanted to tell you that Prof Zack is the medical advisor for The TN association UK.    She is very highly thought of .    My experience of my re diagnosis I'm not sure of but if they can keep my pain under control I don't care what they call it !       I will finish now wishing you good night and good luck with getting your pain controlled.

    • chantell28219
      chantell28219 angiegirl

      Posted

      Hi  angiegirl,

      thanks for your reply i have heard of Mr Matharu she didnt offer to refer me to anyone i think because i am already under a clininc in uclh for vestibular migraines but i feel its not been migraines all along but tn.Im very frustrated and upset as tmd is not a diagnoises i agree with i dont have many of the symptoms. She did mention SUNCTbut said i dont have all the right symptoms. I do no that Prof Zak is the medical adviser for the tna thats why i asked my gp to refer me to her as i thought she would be the best person to see. Now i feel fobbed off and so so upset im in agony and dont feel that my pain has been taken seriously she asked me to come off carbamazepine i have tried and my pain is through the roof i am not coping and do not know where to turn or what to do.I am seeing my gp this morning so will see what happens. Im glad that your been treated well...i wouldnt of minded if i had been referred somewhere but i havent i need my pain controlled thats all i want. Hope you have a good day xx

    • chantell28219
      chantell28219

      Posted

      Sorry i meant to ask what are your symptoms with SUNCT?
  • angiegirl
    angiegirl chantell28219

    Posted

    I was diagnosed with SUNA  the symptoms are the same as to but they say no trigger points, well I have so as I said I don't know. I'm not totally convinced that I don't have tn. You said she wanted you to come of carbamazepine, me too. I also could not do it due to pain and fear. I'm on Tegretol 300mg, Gabapentine 1900mg, Lamotridgene 500mg. Plus loads of other drugs for other conditions. I have a back problem that causes me to have a disability and was put on Morphine by my GP and Mr Matharu recommended I dropped it as it would make my SUNA worse so I had to decide which pain would be the worse !    

    Did you have any help from your GP today ?

    keep me posted.

  • angiegirl
    angiegirl chantell28219

    Posted

    Ps do you have a face book page as you sound like you could use a pain buddy and we could get to know each other a bit better in messenger an I could be pain buddy with you! Ha vet a think about it 

     

  • joanna66862
    joanna66862 chantell28219

    Posted

    Hi Chantell - I was diagnosed with TN last July and was referred to a Maxillofacial Surgeon at the Queen Elizabeth in Birmingham who was brilliant.  He referred me for 2 MRI scans which confirmed TN as they could see that it is caused by a blood vessel.  I told him my worse fear was them not finding anything and people thinking it was 'in my head' and to start reducing my Gabapentin,1600mg per day, and still I have break through pain.  He told me that my doctors had all agreed it was TN so even if there was nothing on the MRI I would still be treated for TN.  I also have, like you?, constant aching, burning, my gums are sore, the roof of my mouth hurts, I also have the shooting pains accross my face, which I describe as looking at a plasma ball, the lightning streaks going accross.  I feel as if I'm wearing false teeth as the sensation in my jaw has reduced considerably, I dribble(!), my eye waters, shooting pains up my nose etc etc.  My point is that we all seem to have our own types of pain.  I also have pain on both sides of my face, sometimes have severe neck cramp that goes up my scalp and over my ear, last time I had that I could barely open my mouth for nearly a week, what's that all about?!  So yes, there may be other things there too.  It sounds like I may have been lucky with my GP's and my Consultant, he's now referrred me to a Professor at the Q E Hospital who's a neurosurgeon, which from being referred, to the appointment is approximately 4 weeks! on the NHS, so it can happen!  Good luck and I hope you get the help you need soon.  Hopefully they'll make a confirmed diagnosis and treat you for what you are suffering from.   Can I finish by saying that maybe you should ask to see a Maxillofacial Surgeon as they are qualified in medicine as well as dentistry and deal with conditions of the jaw, face and neck. Good Luck.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.