inflammation at C1, C2 of cervical spine causing cervicogenic headach

I have had nerve blocks 7 different times. None worked. Still searching for an answer after 4-1/2 years with a headache all day/all day. 6 spinal blood patches, 4 spinal taps, vegus nerse stimulation, hundreds of meds, infusions, on and on and on.

Thank you for your reply.
At C1 and C2? Is your headache diagnosed as cervicogenic?
My neighbor had all the treatments you have mentioned over the years. Then in 2021 he had a fusion at C4 through 7 and is now pain free. It was done by a Dr at Mayo Jacksonville. His name is Dr. Chen. Do you see drs at Mayo?
Kathy

I have had occipital headaches treated with Radio Frequency Ablation and had relief up to almost two years before needing another.

Who and where did you have that done?

I feel my headaches are following the occipital path but had 2 occipital nerve blocks that did nothing. That is why they are going after C1 and C2 and it scares me. They want to do an ablation at C2. Where did they do your ablation , the occipital nerve?

I have had 4-spinal fusions at different times approximately 10 years apart each surgery gave me 10 years of pain free I went to UCSF they are fantastic
I had ablation prior to the last surgery and it did nothing for me but I have degenerative disc disease and spinal stenosis

For head and neck pain, I received facet joint and medial branch injections at every cervical level - including 1 that many docs won’t do. They did NOT help.
I was referred to a pain management doc who confirmed likely occipital neuralgia.
I receive occipital nerve and cervical plexus steroid injections that do help.
I also use Advil and do PT and acupuncture. The meds for neuritis have too many side effects for me and I avoid them.
Occipital neuralgia is not common and docs don’t have many ideas for managing it.

Thank you!
I have all the symptoms of Occipital neuralgia. I believed that’s what I have but after receiving a nerve block here locally that did not work I went to Mayo in Jacksonville. They did an occipital nerve block also that did not work and then after a Spect Ct said it was inflammation at C1,C2. And like you said the pain management Dr at Mayo may not want to do a procedure at C1. They already did a Dorsal Root Ganglion block at C2, 2 weeks ago. They are thinking about doing an ablation at C2 or an injection at C1 which scares me. Did yo have an injection at C1? I don’t want to take anymore medications. I only take Tylenol for pain and an occasional hydrocodone because of side effects. I take Eliquis so cannot take Advil or the like. Where do you go for pain management?
Kathy

I had an injection at C1 by a doc who is trained to do so in D.C.
I live in GA and see a pain doc at Emory.
None of the medial branch or facet joint injections I have had were helpful enough to suggest ablation.
I have had pain for 20 months but recently received the occipital neuralgia diagnosis.
The occipital nerve PLUS cervical plexus injections are of some help.
I’m trying other interventions too. I did MFR therapy and dry needling. I’m now doing manual physical therapy and acupuncture. I put cold and heat on my neck multiple times a day.
I must sleep on an incline and on my back. If I bend my neck my ear becomes painful.
I am very slowly improving because I think I finally have a correct diagnosis. However it’s rare and docs don’t have a lot of experience with it.
I wish you well in your journey of healing.

Thank you for all the information. I too live in Georgia about an hour north of Atlanta. I called Emory Pain Management and aked if they did injections at C1 or C2 and they said no.
I have difficulty sleeping also. Any part of my head touching a service triggers the pain as well as talking.
The Pain Management dr at Mayo recommended PT and Acupuncture but the headache neurologist said to wait, I guess to see if the dorsal root ganglion block worked.
My life has been on a complete hold. I had to cancel a surgery for a different issue because I do not believe I could recover ( 6 weeks or so) with this terrible head pain. I have had it for about 9 months and it began the day afterI had an Endoscopy.
May zi ask where you are having PT, MFR, and Acupuncture?
I too use ice constantly. My freezer has more ice packs than food.
I really appreciate your information.