I've been reading this forum off and on since shortly after my AN was removed in late May 2007. It's been quite an experience and I feel like I should be a part of this community.
I'm 29 years old and had my AN surgically removed using the retrosigmoid approach by Dr. John Leonetti (skull base surgeon) and Dr. Douglas Anderson (neurosurgeon) at Loyola Univ Med Center. I was fortunate in that the tumor was found before any permanent damage was done to the nerves involved; I was completely asymptomatic. Also, my hearing and balance were mostly preserved during the surgery. I did have facial weakness for about five months after surgery, but that has almost completely come back.
My headaches started when I came off the first round of prednisone I was taking for the facial weakness. They started near the top of the incision, above my left ear spread, over time, along the length of the incision. A CT and MRI showed no problems, so Dr. Anderson put me on Neurontin and referred me to the pain clinic at Loyola. I received my first nerve block in early October, targeting the greater and lesser occipital nerves. I had immediate, partial relief from the pain. By late October, the headaches were starting to spread to the front and back of my neck and my face, all on the left side. Dr. Rana at the pain clinic theorized that the spreading pain was a result of what he called nerve windup, which I understood to conceptually be similar to electrical induction. He moved me off the Neurontin and onto Lyrica.
I went to see Dr. Rana again in late October. He was not able to do another nerve block that day because I had not stopped taking my blood-thinning drugs far enough in advance (it would be nice if they would tell you these things...in advance). At that point, none of the drugs seemed to be doing much. That was my lowest point. If it were not for the sight of my beautiful, smiling baby girl to wake me up each morning, I would not be here. Having read so many posts on this forum of people who have had headaches for years and feeling like I had few medical options, I didn't see my life improving.
Dr. Leonetti got me in to see Dr. Candido at the Loyola pain clinic in early December. He added Cymbalta and gave me Darvacet to take at my worst times. Also, I was taking the maximum allowed dosage of ibuprofen with decreasing effect, so I started taking tramadol in it's place. He did a nerve block that day on the greater auricular and lesser occipital nerves. I felt great, like myself again. The effects only lasted about 24 hours, though, and I felt terrible again. A few days later, I stopped the Cymbalta and started taking Celebrex, as the Cymbalta seemed to be making the pain worse.
I went in to see Dr. Leonetti on Jan 2. He said the he was confident that at least part of the pain I was experiencing was a result of entrapment of the occipital nerve and others in close proximity to the incision. He is normally booked two to three months ahead, but he made an opening for me on Jan 10 to release the entrapped nerves. He reopened most of the original incision and removed a lot of scar tissue and all of the smaller nerve fibers it contained. He also removed about 2 cm of the occipital nerve, which showed what he described in the surgical report as "thickening".
I'm taking only the Celebrex now to help with the inflammation. If I don't take the Celebrex, I have pain just like before in my face and neck. I don't have any of the pain from about the front of my ear, back, though. I'm trying to be optimistic about the outcome of this surgery, but I'm starting to get skeptical of it's effectiveness.
I finally come to my questions:
- Has anyone else had the occipital nerve released/transected and continued to have pain in areas not associated with that nerve?
- If so, what treatments have been pursued in those cases?
- Are there drugs with generics that have the same anti-inflammatory effect as Celebrex (it's getting expensive) that I might ask about trying?
Thanks to everyone for the helpful information that you've made available through this forum.
