I was recently diagnosed, and after reading some of these posts, I have so many more symptoms than I originally thought! I started noticing things about a year ago, with a crippling headache when I coughed. Then my ears started ringing, then a pulsing sound in one ear as the headaches are more often and stronger… After a trip to the ENT and a couple MRIs, Chirari’s was the diagnosis. I’m now beginning to think that the utter exhaustion, sore neck, wearing my glasses more, wobbly balance, and tripping over my own feet is due to Chiari’s and not just because I was getting older.
I sat down with a neurosurgeon to discuss my options, and we are starting with an occipital blocker to relieve the headaches. I was told that this is something that I would have to do every 3 months or so. Has anyone else had this? Has anyone else used this for long term management? Or in reality, is this just delaying the inevitable surgery?
I’m sorry I haven’t been on here in a long time to help people! BUT I’ve had the blocker multiple time even since surgery! Yes it may help some with headaches but not the other symptoms!!! Sadly I did great after I recovered from surgery but 10 years out I have returning symptoms although surgery looks good and I read this sometimes happens! I will say that by putting off my surgery I have some “residual” damage like some vision loss, some hearing loss, and memory just to name a few and I never regained them! Best wishes to you!
Thank you for your response! What you had to say is confirming my assumption that the blocker is only a temporary and partial fix. My blocker is tomorrow morning. Here’s to hoping for a little relief for now, as I will begin the discussion for the next step.
Keep me posted on the blocker please! Neither NS that I went to gave me that option. They left the surgery in my court. The blocker would be great if it works, but I know surgery will be imminent. Good luck and I look forward to hearing back from you!
I have not ever had the occipital blocker but about a month and a half ago I asked my pain dr about letting me try gabapentin for the horrendous Chiari headaches. I thought it was worth a try, although I didn’t expect any life changing results. I had attended a pain seminar wherein the dr was talking about finding even small things that help because it adds up. He explained it like if ibuprofen helps 10% and ice or heat helps 20% and maybe Cbd or medical marijuana helps 30% then you have a 60% improvement. It really made sense to me. Anyway, I was just hoping to add the gabapentin to my repertoire and get some improvement. So, I started a low dose and I can’t tell you the difference it has made for me. I know everyone is different but I’m just saying it might be worth a try if your circumstances allow it. My flares before literally took me to the couch or bed. Any movement caused excruciating pain. Now, I do still have the flares, I can still hear the telltale pulsing in my head and feel the pressure in my neck so I know when it’s upon me. But the pain itself has diminished significantly. I feel like I can actually make plans ahead of time now with a much better chance that I will be able to follow through with them on a given day, something that was not possible before. Like I said, everyone is different, but I just wanted to share my experience in case it could help any of you guys. I don’t know how long it will last but, for now, I’ll take it 
I had occipital blockers done prior to my surgery in August. In the beginning they lasted for about three months. The month prior to surgery it only worked for a day. I had a great pain management program prior to surgery with a stretching program, and even added cryotherapy which took care of the inflammation process and boosted my endorphins! Check it out!
I figured I would give some time before responding. I had the blocker last Thursday (a week ago) and honestly, it didn’t work for me. The headaches I get happen when I cough, sneeze, get up too fast, etc. They are strong and sharp, fairly brief, but knowing they happen linger, and are more inside my head.I was told this blocker helps calm the nerves outside the skull. When describing, they sound very similar.
The injection sites are still sore and it hasn’t worked for me. I almost feel worse. Though I was told I could continue life as normal, I felt really queasy for the next 36 hours or so. I don’t know if it was from the Novocain or the steroid blocker.
I do not think that doctors really know what causes Chiari head pain before surgery. After musing with an anatomist, we theorized that there are small blood vessels that pass through the foramen magnum which feed the occipital dura. We theorized that the pain is actually ischemic pain originating from that starving occipital dural tissue. An occipital nerve blocker is not going to help!
I always found, that before surgery, the pain was located in my occipital area but it felt vague at the same time; like I did not know what level of my skull tissues the pain was at. I guess that makes sense when we do not have a pain site on our body’s homunculus for occipital dural iscemic pain! Might be worth asking if your doctors might muse themselves if we are right…
I did find that the Chiari type pain associated with movement and strain resolved after surgery. However, with the wonky ischemic pain that did not make sense to my brain, my brain developed mal-adaptive ways of processing stimuli from my head and neck resulting in strange pain that did not make sense to me nor other health care providers. I finally found that I had developed body image problems - not related to eating disorders but more with how my brain perceived my head and neck in space and with movement. I did graded motor imagery exercises to settle down the crazy sensitive pain, muscle trigger work, motor control exercises, and cranial sacral exercises to resolve head and neck pain that I thought that I would have to live with as medications did not resolve it.
There were some crazy years of thinking and being told that I was crazy but I did find people and strategies that resolved my head and neck pain.
Good luck in resolving your concerns