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HI, I have posted on this forum before, i have TRIGEMINAL NEURALGIA, a very very painful illness, and that is what i suppose it is an illness. As i have said it started many years ago with pains in the right side of my face, thinking it was tooth ache i many treatments at the dentist.When this did not work i had the nerve cut on the inside of my mouth on the upper jaw. Brilliant this worked .... for a while...... Another op again this worked for a while then went for a third op but this time he couldnot touch my face to give the numbing injection. With this i went to see the Neuralagist FANTASTIC i was told what illness i had. I was told to take Tegretol 400mg and Neurontin 600mg FANTASTIC no pain. I could eat talk clean my teeth i was a new person !!!!!. Then the pain came back after about 8 or 9 months. So i upped the dosage and the pain went after about 2 weeks i lowered the dosage to what i was on before great. 4 months later i am at the stage i am now. pain on the whole side of my face and going up the right side of my head just behind my ear, I find it difficult to eat and talk. It is painful to brush or comb my hair.

The Doctor did say to me that if the tablets did not work then i would need an operation, this being on my brain!!!!!!!. Does ANY ONE know anything about this op. I have been told that it could leave me deaf, blind or not even come out of the op atall ??????? PLEASE can any one give me any info on this !!! ????

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  • Posted

    Hello.I hope this might help. THE surgeon you need to see is a Mr Andrew McEvoy who operates at The National Hospital for Neurology and neurosurgery. He is the top man for your condition. Google his name . I am seeing him for my microvascular decompression op for my Hemifacial Spasm and I am sure it is a similar op. I have every confidence in his skills.
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  • Posted

    Are you seeing a pain specialist? This is important as you need to be able to take advantage of latest pain management treatment. I have just completed a pain management course called INPUT at St Thomas' Hospital and it has transformed my life. Don't get caught in that cycle of increasing medications, decreasing medications, increasing etc etc.

    I hope that you can get the help that you need.

    Pain that has gone on for more than 6 months is considered to be Chronic Pain.

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  • Posted

    Hello Suzanne. How are things going with your TN? I have been diagnosed with it as well and at the moment suffering pain on the right side of my face. Having upped the dosage of my tablets twice.with no improvement, I have decided to contact my doctor re an operation. There is a good article on this website about the risks but I am willing to take the chance. Will let you know how things go. I expect it will be a slow process but hopefully with a good outlook.


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  • Posted

    Hi Suzanne and Raye

    My mum had trigeminal neuralgia for many years. She was in and out of hospital undergoing many operations on the nerve inside the mouth. She had the operation on the nerve in the brain and was left with the side of her face being numb. She always said this was a small sacrifice for getting her life back. She suffered for 12 years and though the survival rate was 30% (40 plus years ago) she really had no other option as medication was having no effect. I wish you both well and a speedy recovery smile

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  • Posted

    Thanks for that info Hazeyk. It has made me feel a lot better about having an operation. Off to see my Doctor this morning about which specialist to see,

    Many thanks again


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