Occipital Neuralgia Online Support Group

My wife has severe occipital neuralgia. The pain started at her neck and spread to her face, back, legs, arms, etc. We aren't sure the exact cause, but it is likely from a craniotomy that she had several years ago to remove a benign tumor. We think it might have damaged some nerves when they cut her noggin open.

Anyway, two months ago she had facet injections and nerve blocks, x-ray guided under general anasthesia, with lidocaine and cortisone. The short acting lidocaine actually completely took away all her pain for the first day. We took that as a good sign that they found the source, which we think is the occipital nerve. Since they did the facets I guess we can't rule that out either though. It took about a week of pain and time off work to recover and for the cortisone kick in, but they ended up giving her a good 6-8 weeks of relief. Unfortunately, now the pain is back just like before.

We're going to see her doctor again on Friday for next steps. She's pretty bummed that they only lasted this long and now the pain is back.

I've been reading of all the other options - more injections, radiofrequency ablation, decompression surgery, gamma knife, etc, etc.

Anyone who has been in a similar situation have any advice or things to ask the doc? All of the procedures seem to have risks and benefits. I suppose they might just want to do injections again, but I'm not sure how often we can keep doing those.

jrtwildcat , welcome and thank you for your intrest in this condition and u will b helping ur wife. O.N. is a very tricky and unforgiving pain cycle. I have had it since 07 and had decompression surgery in dec,11. I research all I could and got as many facts and talked to as many people like me as I could as well. I went to 17 diff drs. They really want anything to do with the surgery nor are they educated on it. I had several drs tell me you for sure do not have occipital neuralgia. Really? Now that I have had the surgery and dr found my nerves in the bundle literally crushed under the muscle and occipital tunnel and he wrote about them in his report i have proof. Sad to say, drs tiptoe around this and unless u go to a Dr that is very interested in this topic I am sorry to say she might end up in the same search. They want to do blocks and botox and stimulators or ablations as well. Research everything before u do it. They do have dif outcomes just be informed. Ask me anything about my story and also any info u need and I will try to provide that for you. We are all here to support each other. Let me know how I can help.I dont want to overload u with details if thats not what your asking right now.

Thanks for the response Mamalu, I'd definitely be interested to hear your story. How did it start, how effective was the decompression, etc?

you can look up mamalus diary and that will give you some info. I am leaving for work now but will fill in the rest later.Are u on fb?If so leave me ur name,just as is on ur fb.

I can put u into several groups that have more info as well.

Thanks Mamalu - I did check out your diary page. I'm not on fb.

Back from the doc, ended up scheduling her for more injections for Monday. Since we don't know if the occipital or facets were what worked, they're going to do occipital, wake her up and see if they worked, then if needed knock her back out to do the facets. The hope is that these last longer since the pain hasn't been set in quite as long.

wow,who is her dr and what kind? I am asking because this is the deal,if you get the injections in the wrong place they will produce no relief,even if she gets injections and there is relief, that is what most drs go by. They ask that u have a positive response to the injections. Now having said that some of the people on here have had the inj w/no improvement and still had the surgery be a success. When I had my decompression surgery the dr told me that i could have had many more of those inj and never had gotten relief because my nerves were so crushed under the muscle/occipital structure tunnel and without surgery would be ongoing pain with no relief to get better. This is most common to be a progressive condition. Pain only gets worse and worse. I could not take another day, it had change my life forever. Iwas a nonstop active Italian run around mother who never sat still. I am thankful i got some relief and now waiting on second approval from bcbs to go forward. Have u seen Dr ducic lecture. I am asking as it is very informative when I watched it I felt like he was talking directly to me.

I don't want to name her but here's the info:

"board certified physiatrist with a special interest in musculoskeletal medicine. She has been in practice for nine years with experience treating a variety of neuromuscular disorders and injuries of the soft tissues, joints and spine. Her focus is on using a wide variety of tools and disciplines to help improve function and activity."

Last time they did them under anesthesia and x-ray, and they did produce good results, just didn't last very long. That's what they're doing again, but first occipital and then facet if needed. I think she wants to be more conservative before trying to do ablation or surgery.

Hi jrtwildcat, I wanted to let you know that I had 3 nerve blocks and 2 facet joint blocks last fall and each gave me 4-9ish days of relief. They were given to me by a pain management doc (he's my hero!). He ended up sending me to a great plastic surgeon who gave me a round of botox in January that gave me complete relief for just over 2 weeks. When I went back for a 6-week followup he wasn't too impressed that the botox lasted only 2 weeks but thought I was still a candidate for decompression surgery, which he did March 27th. He did both sides in the back of my head. When I went back the next day to have the drain taken out he said there was no way any of the blocks or botox every would have given me any long-last relief due to the size and depth of the muscle on the nerve. I went back for a checkup today and the doctor was very pleased that I have been symptom free and have been off pain meds for almost a month. Back in the fall the pain doc mentioned ablations (as did my neurosurgeon)but I said no way because I had read in research that once you damage the nerve the success rate for decompression surgey goes down. For me the surgery wasn't too bad. I was able to go back to teaching a week after the surgery. My suggestion would be to keep researching ON, doctors familar with it and all the options available.

Thanks RAH468, that is very helpful! We'll see how this next round goes this afternoon, but we'll definitely look more into decompression surgery.

Did they use endoscopy, or a traditional surgery on yours?

Post edited by: jrtwildcat, at: 05/21/2012 08:37 AM

JR- You know, I just read the surgery notes and it didn't say but I'm pretty sure it was endoscopic as my insicion runs up and down and is about 2 inches long. I don't think the dr. could have gone far to the left and right with that type of incision and I know he took out a bunch of junk on both sides. It's no wonder I feel better! lol