Update from neurologist

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Saw my third neurologist yesterday (we thought I was seeing the neurosurgeon, but I'm glad there was a mix-up as she was so good with me). I spent almost an hour with her going through my issues, and I finally saw my MRI pictures - it's quite terrifying seeing a picture of your own brain. It turns out I have a Vascular Loop in my 7th nerve which needs to be dealt with. I am awaiting to hear back from her after she speaks to the head neurologist and the head surgeon because she cannot leave me with that in my head, or on the millions of tablets I am on.

I cannot express how relieved I am to finally see that something is happening. It sounds bizarre to say I'm glad they found something, but after a few years of twitching and unbelievable pain, it's a relief to know I'm not going crazy and there is something causing the pain. And now the neurologist can see why too, and she's getting the surgeon involved, my hope is that by the end of the year, the issue with this loop in my brain will be sorted out and I might be on the road to recovery.

Unfortunately, she did notice some spots on the MRI too which can indicate MS, but she wasn't 100% sure about that so she is going to follow that up with her colleagues, so for now we put that to the back of our minds.

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  • Posted

    Hey VJ

    Great to hear your news and that at last you’re on the move to having hopefully a successful MVD. Yes, there’s no doubt that the imaging of an arterial loop compressing your cranial nerve root is the best thing to happen to you for a long time!

    My experiences mirror yours very closely. I had TN-1 for about 2 years and it got so bad that even 1600mg of Carbamazepine per day couldn’t control it. My neurosurgeon was “so pleased” when he showed me my MRI with that classical compression in clear view. I had MVD 2 years ago and have never looked back - got my life back. I hope your experiences are the same


    Big D

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  • Posted

    Quick reply: did you mean cranial nerve 5, which is the Trigeminal nerve? or number 7 which is the Facial Nerve?

    Arterial compression of the former is known as trigeminal neuralgia - so I may have been speaking out of turn Apologies if so!


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  • Posted

    Victoria, here's hoping for a full recovery for you; you are in my prayers. Glad you got to see the neurologist and that you have some answers, partial answers, at least. I hope the final report is something simple and straightforward, and something you and the doctors can easily deal with.

    Sorry for late responses, but I had another "attack" just last night-- after I thought the pain was all gone! Strange. New to all this.

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