My seizures were finally diagnosed when I was 20 years old. This, of course, was six years after my first grand mal and I had been having absence and partial seizures since I was born, probably. I had developed quite a pharmacy of failed anticonvulsant drugs (Phenobarbitol, Dilantin, Tegretol, Depakote and Neurontin). They had failed because a) the side effects were too horrible or b) they just didn't work. After 30 years without adequate seizure control, it was time to try something different. I consented to give VNS a try. I was implanted on March 30, 2001. I opted to do the operation as an ambulatory patient and leave the hospital the same day. I was the first Kaiser patient to do so. Why on earth would anyone want to STAY in the hospital??? Anyway, my recovery was difficult the first few days. I had a lot of swelling, nausea and discomfort. Fortunately, every passing day brought me closer and closer to feeling good again. Two weeks post-op, my device was activated and I immediately could feel the "tingling" in my throat, which for the first few days is almost painful... well, fairly uncomfortable anyway. But, it gets better as the nerve endings begin to adjust to this new activity. Within a week, I could no longer even feel the cycling of my VNS. I did notice that my auras were going away and a lot faster. As soon as I realize I'm having an aura, the cycling of my VNS knocks it back a few pegs with every cycle. I must admit that I am quite impressed. I was optimistic about the device but I guess you could say I'm a believer now. Every two weeks, my neurologist "ups" my device and so every two weeks, I have to get used to new levels of stimulation. But, it's working and I'm starting to feel a lot better about going out and doing things. Other VNS patients have said this before and it's so true... you really begin to feel like YOU have the control for a change. Those of us with seizures often feel out of control and that our seizures take control over our lives. It's empowering to be able to turn the tables and be the one with the upperhand. Cyberonics, Inc. is constantly working toward improving the implant and with every successive version, the devices are becoming smaller and less noticeable. I would encourage you to click on my link to the Cyberonics site and see if this might be an option for you. Maybe not but it is so wonderful to know that you DO have options other than drug therapy. It's not the only answer and in many cases, not the best one. Take care and thanks for visiting me.
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Kaitlynn's Story
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