Barbara's Experience with Surgery

After being a Chronic Cluster Headache Patient for over two years and trying every medication known, my neuro called one morning and told me he'd made me an appointment with Dr. Wayne Hurt in Houston for an evaluation on a radical surgery called Stereotactic Radiofrequency Trigeminal Rizotomy (probably mispelled). He told me I was out of options and couldn't live the way I was hurting.

I met with Dr. Hurt for four solid hours. He's a wonderful neurosurgeon and gave me every good and bad thing about the surgery. He even told me I could die from it. My question at the time, "What's the down side to that?" That was the shape I was in at the time. I would have done anything to stop the pain I was having to endure and the medications were NOT working.

Dr. Hurt sent me home to think it over. I did and went back two weeks later and had the surgery. My optic nerve was damaged during the surgery and I came out of it with double vision which resulted in me having to go back two weeks later to another doctor and having another surgery on my eye. I have permanent optic damage, but am seeing just one of things now although it's a little blurry and always will be.

For about a month I was almost pain free, then the demon came back with a vengence. The surgery did NOT work on me. I was numb on my left side and the surgery had not worked. I knew the odds going in and it had been my choice, but I had been so hopeful. It put me in a bad depression and I almost went over the edge.

But then I got back on the CH.com board and talked it over with some of my "friends" there and one mentioned a new drug called Topamax that was being used experimentally in Denver. The following morning I called my neuro about it. He had just read something on it and called in a prescription and I've been virtually pain free since. IT WORKED!

Am I sorry I had the surgery? Not really. I don't waste time on regrets. It was a choice I made at the time and it seemed like a good one then. I'm sorry it didn't work for me, but I'm sorry all the meds I've taken over the years didn't work also. But I don't dwell on the negative. I'm GLAD I found the Topamax and am thankful for each day of remission I'm given with it. I'm actually normal now (or relatively so).

I did promise God that if I lived through the surgery that I'd work to form an organization to help other CH sufferers and help find a cure for this disease and that's what I've spent the time since my surgery doing. OUCH is an advocation with me and I urge each of you to join and work in it. Together we can beat this disease that's taken so much from so many of us.

Last modified: 2001