Occipital Neuralgia....

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I had MVD for TN in Jan. 2017 and that took care of the TN pain which was wonderful but after I was weened off the medication  I had pain in the back left side of my head, the same side as the TN. After going to PT, acupuncture and massages, I was diagnosed as having Occipital Neuralgia. I had a nerve block which only lasted a few hours, pulse radio frequency ablation that didn't help at all and am back on the meds that I took for TN...ugh...the neurologist referred me to a neurosurgeon who recommends C-2 ganglionectomy which deadens the nerve completely. Has anyone done this or had ON after MVD surgery? I'm scared to have another surgery but can't live with this pain. It feels like my head is rubbed raw when I touch it, very difficult sleeping since I can't lay on that side or even on my back without pain, I get shooting stabbing pain at times when I'm not even doing anything. The TN pain was unbearable but this isn't any easier to handle. Thanks for any input. Mary

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  • Posted

    Hi Mary - first of all, I am so sorry for the unending pain you are enduring.  I too had MVD surgery in 2009.  Unfortunately, the surgery was unsuccessful and now live in constant pain.  i have seen many pain specialists along with two neurosurgeons and cutting the nerve was not ever mentioned to me.  I belong to a few TN groups on facebook and I do remember one person commenting on having their nerve cut.  What that person now experiences is total numbness to that side of their face.  In my case, I do have areas on my TN side that are numb but experience pain below the feelings of being numb.  Sounds very strange but I can't explain it or even the medical community.  My very best wishes to you.  TN has certainly changed my life - turned it upside down.

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  • Posted

    hi mary im new to the group and i also had mvd surgery im so glad i joined this group because i thought for a second i was going crazy ..i too have sharp pains in my head on the right side where mvd was performed im in many groups n asked this same question n nobody has experienced it...i thought i was losing my mind these pains are sharp n catches me off guard its embarrassing for me cause it happens in public as well told my doctors they put me on gabepentin... even er visits where they put me on prednisone and gave me strong pain meds called dilaudid which helped temporarily....im presently on percocet use to be on 10mg now they got me on 5mg n nothing isnt working for me....i shld be use to pain dealt wit TN for 12yrs u wld think i cld handle this n cant...
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  • Posted

    Hey! Sorry you're having so much pain sad I have the opposite story: I was first diagnosed w/ occipital Neuralgia by my 1st (regular) neuro. I saw him for yrs, still can't tell you why. ...yes I can: I was in extreme pain, 23 yrs old, & he really wanted to help.  He showed me this article that refers to ON as "swimmers headache".....have you ever heard that? I used to swim competitively but until I was like, 15 tops. He seemed to think played a role in my ON dx.  Like, what? Wearing goggles gives you ON? Why doesn't Michael Phelps have it???? wink 

    Anyway, he gave me nerve blocks ALL the time....several x/mo & they never helped. In fact, it left permanent dents and lines in my face.

    Moving along, FINALLY saw more specialists who realized I had a blood vessel compressing the TN nerve; was dxd w/ TN 1&2. I had MVD but still have extreme pain 24/7. 

    I've had so many specialists tell me how dumb it was for me to keep getting occipital nerve blocks if they weren't helping...the block should be used to either rule in or out ON. So since they do help you (even for a tiny bit of time) then maybe the surgery could be a permanent solution for you??? Trying to be positive bc trust, I know how bad this all sucks. Will be thinking of you!!! 

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  • Posted

    Sorry to hear about all this pain.  I’m getting nowhere with dr s.  No diagnosis. But I have a constant one sided headache and I can kind of “cup” the area at the back of my head where it hurts.  It feels weird and uncomfortable to lay on at night as feels almost bruised and I also have a sore feeling where i ve been rubbing my head.  I also have spikes of pain through the day above my eye. And tingling at back / base of head etc.   Any neuro tests like looking into my eyes. Reflexes. And other Neuro test they say are fine. But I’m so concerned as when the pain spikes it mays me me feel nausea s.  I did see a cranial osteopath last week and she said everything was “jammed” and certainly that evening I had very weird feelings into Head.  But I guess my question is. “Does this sound like ON “ I’m terrified I have a tumour or something?  X
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  • Posted

    Wow, that sounds horrible and totally unfair to get such shooting pain .... AGAIN. I have not heard of this before. 
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