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My occipital neuralgia battle- Jan 2012

I'm 31, and have been battling left side ON for 9 months now, the last 5 months everyday, all the time... It's the most debilitating and excrutiating pain I have ever felt. I was in 3 major car accidents in 1998, and twice in 2000. The most detrimental being my head on collission in '00, over time I have lost the lordosis in my cervical spine causing severe paraspinal muscle spasms. I was in PT, chiro, massage therapy , etc for 4 years. Then suddenly this April I had the most horrible burning, pressure like pain in the left side base of my skull that shot up over my scalp and temporal region and behind my left ear. It has never gone away since. I've tried more than 34 medications (from neurontin, lyrica, topamax, nortriptiline, flexeril, dexamethasone, Valium, maxalt, immitrex, and every pain med from excedrin to percocet. I've had 3 occipital nerve blocks that are horrendous the first 3 days then some relief for 2-4 days. Nothing has ever taking the pain away. Today, I had my first C2 selective nerve root block, fluoroscopy guided under general. Just waiting to see how this goes.. If not it's either a spinal cord implant neurostimulator by medtronics or occipital nerve decompression surgery. Not sure how much longer I can hold on. It's great to have forums like these so u can talk to people who understand..

Jan 5th-- fluoroscopy guided C2 Facet block under general anesthesia

Jan 10 2012

Well the procedure went well, awoke with neck stiffness. The facet block was performed on the left side of my neck, I lied face down and was sedated with propofol so didn't feel a thing. Just a littlenausea when awakening but was home after two hours. It has been hard to sleep with the collar and the second day I had a new unexpected excrutiating pain to my right shoulder, down my arm and numbness to my last two digits...found out I have a herniated C6 disc as well:( so my pain from my ON has been a lot better. The constant burn has subsided and I get occasional stabbing pains, only one left temporal migraine since. However this morning (Jan 10th) 3 days after, my ON pain has returned with avegence! I'm throwing up, trying to take my percocet, Valium, and ice to neck but it is just unbearable... I pray this gets better...

Comments (1) Add Comment

written by gdayitsj, May 15, 2013

Hi everyone.
I'm located in Australia and have also had an ongoing severe pain which the doctors believe is a C2C3 nerve branch. I wanted to ask if this is the same situation you are in?
After reading a number of papers put forward by specialists and being lost in translation over and over again I googled the word forum aswell as my symptoms and found this site. I'm so relieved that other people have an understanding on how bad this actually is. My pain has been going for about 3 years now. It has always felt as though there is a tree root growing from the top of my neck to the underside of my scull at the bottom right hand side. Its the hardest pain to take and get through the day with. Usually the only way to sleep is to drug myself. I've learnt to accept the pain and I try my best each day to not let it destroy me that day .... day after day after day. I also had the c2c3 nerve phasit injections (probably some bad spelling there). I'm concerned that I had relief afterwards but I'm not sure if it was from the local or the injection. I'm stuck in a situation where I have been told by the surgeon that performs the c2c3 nerve block that I desperately need the operation however he will not operate unless I have insurance due to unforseen costs from the hospitals should any extended stay be needed. Where this gets interesting is that because the pain has been documented for so long I can not get insurance for this type of operation as it will be an exemption due to pre existing injury.

Has anyone else been confronted with this?
In the last month I have been forced to wear a sling over my right shoulder to stabilize my left arm as I needed shoulder surgery a month ago. This is aggravating the nerve pain to a new level where I can bearly open my right eye anymore. I know its sounds very over the top but the pain now feels even worse and I'm fearful it is starting to branch into my brain. If there is any doctors reading this or anyone who knows if this is possible I would really appreciate hearing your thoughts.

Thankyou for reading this all the way through!