Advice needed in whom do I need to get referred to after MRI

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Hello all, I have just seen my dr tonight to see what the next step is after having MRI scan and not very good. Firstly he couldn't even tell me if anything was seen resting against my trigeminal nerve or a blood vessel ? As he said can only go by what radiologist has written and he cannot read a mri scan . I said that I want to speak to someone who can perhaps a neurologist or neuro surgeon ? He doesn't know which one to refer me to so will ask his colleagues but also said if I can get info from you guys and leave a message for him Monday. He didn't even know there was any medical procedures that can be done to help this. So please help me with some info I'm actually in the uk in Kent area , if you have any recommendations please can you let me know I would really appreciate it, just want to speak to a professional that is able to answer my questions and see what options are out there  ........

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  • Posted

    Hi,

    In the first instance your GP needs to refer you to a Neurologist, who should be able to read the MRI. In the event there is any indication of compression of the nerve or entanglement with a blood vessel the Neurologist would refer you to a specialist surgeon (i.e a neurosurgeon). Are you on any medication for TN? If so, how and by whom is it being managed?

    Good luck.

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    • Posted

      Hi Susan

      Thank you for coming back to me. I know I'm an early diagnosed pt it's been four months and I'm on 600mg of tegrotol daily and my left side of my head is tender constantly every day and other symptoms in my jaw also constantly except the stabbing pain which your on tenterhooks of coming on at any time. I know reading other stories there is people much worse of. But I just need to have some proper answers and to what is available . Now the cold and windy weather is here it's making it more promenant . It's just the thought of having to continue life like this living in fear of a full on attack that scares the life out of me. Just couldn't believe the dr didn't really know anything about it and was so blasé . I did try 800mg but couldn't tolerate it had hives and was so sleepy especially driving home from work and falling asleep when I did get home and that's no way to live. He also didn't even know there was any procedures they could do about it. Have you had any and are you in the uk? X

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  • Posted

    Hello Dawn, I think this is a very unhelpful consultation you have had and can imagine how frustrated you must feel. When I started with the TN pain, the Dr I saw prescribed antibiotics for sinusitis. When I returned to the surgery after the course to report nothing had changed with my symptoms, I saw another Dr who within minutes diagnosed TN and referred me to a neurologist who arranged a MRI. I did see the first Dr again for another condition and she was totally honest and said she had no knowledge of TN.

    I would phone your practice and request an appointment with a dr who does know about the condition and request a consultation with a neurologist who can  speak knowledgeably about the condition and also help with your anxiety and frustration.

    look forward to hearing how you get on. Don’t lose heart but it is an awful thing and often takes the shine off life.

    Best Regards

    Sharon

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    • Posted

      Hello Sharon,

      Thank you for your advice. I will ring the Drs in Monday and leave the message that he needs to refer me to a neurologist, bad I know. Just want some clear answers to my questions that's not a lot to ask for anybody .Fingers crossed will let you know how I get on .

      Regards

      Dawn

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  • Posted

    Hi dawn56052

    ?This process seems awry to me. Your GP should have referred you to a neurologist first - he/she would have referred you in for MRI and the results would go back to the neurologist. On the basis of the MRI results a neurosurgeon (may be in the same dept) would be come into play and advise you what the options are.

    ?600mg of Carbamazepine is a lot, although others on this site have been on much more. I was on 1600mg per day (luckily I'm a big bloke and could tolerate it) for about 6 months after having TN for 2 years. Had MRI, they saw that the nerve root was pressed on by a branch of the cerebellar artery and the best option offered was MVD - had the op in March and never looked back. Weaned off Carbamaz completely now and have a normal life. I know that is not the outlook for absolutely everyone, but if you have some obvious compression your neurosurgeon/neurologist will tell you all the options and possible outcomes.

    ?You may have to start with your GP and say you want referred to a neurosurgeon or his dept in a big hospital near you. They'll do everything you need and advise properly.

    ?Let us know what happens.........

    Cheers

    Big D      

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    • Posted

      Hi Big D,

      Thank you for all your helpful advice I will be leaving a message as requested by him on Monday for a referral to a Neurologist for some clear answers. Funny thing he actually said to me do you want some pain killers, I said no what use are they to me they didn't even touch it last time when I had bad attack tramadol and ibroufen 2 hourly didn't even help one bit . I don't think they realise the severity of the pain when it kicks in. Hope all well with you , will keep you updated 

      Regards

      Dawn

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  • Posted

    What a very unhelpful G.P. and an unusual way of going about an MRI.Perhaps the MRI availability was better than the chance of seeing a consultant neurologist.When my daughter first had TN the hospital consultant arranged the MRI and put her on the highest dose of Tegretol.She was  on 1600 mg for months and we reduced it gradually,till she had breakthrough pain and we upped it slightly and stayed at the lower dose ever since. Instant pain relief.They also gave her acyclovir for a couple of weeks.From there ,she was referred to The Walton Centre ,a specialist neurological unit next to Aintree Hospital.Liverpool.I'm sure there will be a similar one where you live.The professor there outlined the options(there are a few) ,but strongly suggested that,as the tablets were controlling the pain for now,we should stick with them.The other options would still be available in the future should she need it..(daughter has a vein looping over her TG nerve in her cheek.She also has learning disability and other,genetic physical disability that would make yet another operation difficult for her).

    X Beth

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    • Posted

      Hi Beth,

      Doesn't sound like you and your daughter have had it very easy at all. I hope she's in a good and comftable place at the moment.  Thank you for your helpful advice and I will be following it up next week. Just hope I won't be waiting for months .

      Kind regards

      Dawn

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  • Posted

    Hi, I just want to help relating my own experience. I have TN (Trigeminal N). I made my own research of this symptom and I was convince that I have a TN (right side of my face). I don't want to go to any neurologists because what I read on my research is just the same questions the doctor will gonna ask me. Im also aware of different medicine for TN but I don't want to use it either because of the side effects. The same thing with the operation treatment which will cost you so much money. Somebody suggested me to use Vitamin B1B6B12, 3x day while Im in the Philippines. I am using it for about a month and my pain is gone 99%. I don't know if this will work for you but it work for me real good. The good thing is this is not a prescription drug. In the US where I live, they have Vitamin B Complex (2x day). I never come back in the US yet but I will continue using that vitamin because it works on me. I hope this will work for you if you have a TN. Good luck! Since its still early to claim that Im cured, I will post again next time.

     

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