I FINALLY had a correct diagnosis. Occipital Neuralgia. It’s funny how not even 1 minute of my pain doctor sitting in the room with me I had a diagnosis and we were on our way to a treatment plan. Since I had already been through all of the medicines that did not work, it was now time to look at alternative options.
First we went through nerve blocks. AHHHH Relief! Oh you only last for a week…. Well that worked so now what is next? Radiofrequency Ablations. Ok, a day of hell for 1-3 months of relief, I’ll take it. Problem being my C1-2 were causing lots of issues for me. My pain doctor at home decided it was best to sent me out of town to seen another doctor who specializes in this type of treatment. So I traveled 3 hours away to meet with another more specialized pain specialist that completed the Radiofrequency Ablations on my C1-2 area. He completed this twice for me and then decided it was best that I see a neurosurgeon.
I was given the option of a neurostimulator or to sever my occipital nerve completely. After lots of research and discussing with my family, we decided the best choice for me was to have my nerve severed. On February 26, 2009, I had my occipital nerve severed. Just a little over 3 years from the day hell started, little did I know that 6 months later I would be completely pain free.
theachybrain 
Its great to see someone getting relief from this. I was just diagnosed and we are starting with medication and steroid injections. Did you do steroid injections? Did they help you? I really don’t think my pain is bad enough for surgery, and I really don’t want to get any type of surgery. Its great to see that worked for you, though!
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I had numbing blocks done and then we moved on the the radio frequency lesioning from there. I hope the blocks helped you!
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Your first paragraph sounds like my life lately. A group of doctors in the hospital for a week, and my neurologist weren’t able to figure out what I had, but as soon as the neurosurgeon I saw walked in, she asked me a few questions, felt around my neck like the others did and told me what it was. I had the nerve block and I’m on 200mg of gabapentin 3X a day. I had 2 really bad days in a row where I almost went to the hospital last week. The surgery sounds scary
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I’m sorry you are dealing with this too! The surgery saved my life! I’d do it again in a heartbeat.
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Same to you! I’m starting physical therapy next week and if it doesn’t work I’m going to try the nerve block again. My neurosurgeon said it may take more than one to help. So are you not in any pain now? The surgery scares me. What did they do?
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I’m so sorry for the long delay in my response. I no longer have any occipital neuralgia pain.
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That’s quite a scar for a simple occipital nerve transection. Why is it so big and irregular? (I’m a doctor, btw)
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They also removed some muscle during the surgery too. Regardless the size it’s been a lifesaver for me!
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