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occipital neuralgia

Started by murfisto on 07/30/2010 2:14pm

I have been diagnosed with bi-lateral occipital neuralgia(ON) following cervical spine surgery fusing C2-C5(with C5-C6 congenitally fused). I have a long history of spinal surgeries due to congenital severe osteoarthritis, especially of the spine. My ON has been treated, after multiple evaluations using local blocks, with radio frequency ablation of the greater and lesser occipital nerves. This treatment manages head pain from below my ears to the sides of my eyebrows. However, serious neck pain, up into the back of my skull remains. I still have other pain arising from continuing degeneration of my spine including radiating pain from my trapezius muscle to my right shoulder. My local pain manager is refusing to attempt more proximal blocks at C1-C2 levels due to presence of fusion apparatus(rods and screws) and suggests the neck pain may be arising just from the presence of that apparatus. I am currently using NSAIDs and opiodes to help function. Any suggestions?

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I have 30 years of unexplained mostly right-sided neck pain plus other radiating pain from that and have learned recently that it is ON. Dr. I Ducic at Georgetown in D.C. gas pretty good results with 206 patients with ON where he did neurolysis of the greater occ. nerve, some just the lesser occipital nerve, and some a combination of the two. He is a plastic surgeon and I thought "What?" too but have been told that plastic surgeions really know those peripheral nerves and arteries. This is a growing field of research and science but try Pubmed.org to find his article and other similar articles on said topic. Good luck.


My pain manager finally tried a new tactic to manage the awful head/neck pain: Radio Frequency Ablation(RFA) of the greater/lesser occipital nerves. marginal relief. his next approach was the same procedure at C2 to C5. So far, now 10 weeks passed the procedure, excellent pain relief. I had my doubts because there was much lingering pain from the procedure itself but once that subsided i've had no breakthrough pain at all! Interesting that today there is an article in Spine Universe on radio frequency rhizotomy(another name for RFA) as a potential treatment for neck pain.


I have had significant right sided neck pain for 30 + years and just diagnosed it myself with the help of a diagnostic C-2 nerve root block (I had about 7 years ago) and some medical sleuthing with a medical librarian ! Yep, I too have occipital neuralgia (ON) confirmed by Dr. Ivica Ducic, author of the article "Indications and Outcomes for Surgical Treatment of Patients with chronic Migraine Headaches Caused by Occipital Neuralgia" obtained by PubMed.org. He is a plastic surgeon,M.D. and Ph.D in peripheral nerve surgery. I have surgery scheduled (a one hour outpatient but requiring gen. anesthesia) on Sept. 21st. He practices at Georgetwon Med. University Hospital in Washington, D.C. Please read his article and I believe it is going to help me. I will keep this site advised for your benefit and others who may read it and benefit as well. Have some hope that things can get better!


Wait till it wears off and it will.
I had this done after my 4 level anterior cervical fusion, and I got that awful headache!
I could not open my eyes the pain was so severe and I was so light sensitive.

The second time, I could not walk for a month! I could not be left alone, and it sucked.
I had it done on L-4-5 S-1 too.
Sure you get relief for a year, but it has to be repeated and then its not so great.
No more needles for me.

Topamax and its side effects, should be illegal.
How do they sleep at night selling all those lovely side effects to us?

RADIO FREQUENCY has no clinical trials and my pain doctor refused to acknowledge, that me unable to walk 2 days later for a month, was related to the procedure.
Burning the nerves in your neck or back to kill the pain for a short period of time, is very extreme.
Ask them to give you some "proof" or statistics for the outcome.
They do not have any~


My experiences with RFA (radio frequency ablation) as treatment for my ON varied with each treatment. The first experience gave me profound relief of the ON pain for about 5 months. The first 30 days after the treatment caused pain in and of itself since they are intentionally burning/cooking those nerve segments and the sensation was like being burned in the area of treatment. What a surprise...
When i returned to my pain manager 6 months later due to the ON pain gradually returning to where is was prior to the first RFA, he did another RFA with similar results except freedom from ON pain only lasted about 6 weeks after the first 30 day, again. I had to wait another 4 1/2 months to be treated again but this time i had what i consider disasterous results.The terrible burning pain during the procedure had me screaming but the doc told me it would only be for another 15 seconds so suck it up!!! My head was 'on fire' for almost 8 weeks after and i received NO relief from my ON pain! That took care of RFA's. I am going back next week to re-try at least injections to the upper spinal facets (blocks) to see if i get any relief as my head/neck pain is gradually getting worse. He may also try an epidural injection at C2-C3; anything to help. I'll report back if successful.


Here we are eight years down the road I've rarely been on this site and have talked about 35 year history of C2 pain occipital neuralgia and otherwise confusion about what caused significant right sided and Central occipital pain for many years. In the last 2 years when I saw orthodontist, and discussed why I never had complicated jaw surgery and orthodonture because of this pain he stated he didn't think I've been fully or adequately diagnosed that I had central nervous system pain . In recent months started using CBD oil which is the marijuana hemp plant without the THC which is the psychoactive ingredient in other words get the influence of the leaf oil for pain relief without the THC which is a psychoactive agent guys girls my terrible terrible longstanding history of this C2 related pain is 85 to 90% gone with simply drops under the tongue twice a day it's really remarkable please go and get some wherever you can and try it I noticed immediate results in the beginning it's mostly just difficult to know how much to use for pain syndromes as every individual's pain is subjective.