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Two days until surgery...

Posted May 04 2011 8:44pm
I have had daily migraines for four years. This pain started when I was 21, shortly after I had brain surgery for Pseudotumor Cerebri (also known as Intracranial Hypertension). I always believed that they would magically go away, since they started for no particular reason. After seeing over five neurologists, taking every prescription on the market aimed at treating and preventing headaches, getting botox injections, and countless tears, I came across a rare disorder called Hemicrania Continua in January of this year. I promptly visited my current Neurologist and he kicked himself for not thinking of it sooner. I had all the symptoms: a headache that never, ever, went away on one side of my head, a runny nose, and a drooping eyelid. He prescribed an anti-inflammatory called Indomethacin (the only way to correctly diagnose HC is if it responds to to this medication), and within a week I was pain free for the first time in years. I was over the moon.

About a month into my Indomethacin treatment I started to have severe side effects including stomach issues and extreme kidney pain. My general practitioner decided it would be best to discontinue this medicine before it did any permanent damage. This was a hard decision for me. Yet, in a way, I was more comfortable with my headache because I've been living with it for years. At this time, it was the end of March and I wasn't sure what to do. I had to take several years off from college after my brain surgery, and last Fall was my first time back at school and living on my own. When I was out of pain for those few weeks I realized that I could not live a real life with headaches. And while painkillers really do help me make it through the day, I hate them. As my loved one can attest, I become a raving bitch while on them. So, I wasn't left with many options. That is when I came across Occipital Nerve Stimulation.

There is not much known about ONS. Since it has yet to be FDA approved, there are only a few clinical trials that are written to be read by doctors. I was confused and overwhelmed, and that's when I found the blog http://onstim.blogspot.com/. I no longer felt alone. In one night, I read all of her posts because I was so riveted. She made me laughed and cry. She gave me so much hope. Some day I'll be able to plan a vacation that lasts longer than two days and maybe even get married. Soon, I'll be able to work again. This promoted me to call Medtronics (1-800-510-6735) and find a doctor that will do the surgery. I was pleasantly surprised to find that my last neurosurgeon, Dr. Boggan at UC Davis in Sacramento, also does the ONS surgery.

Since Dr. Boggan is in high demand, I wasn't able to get an appointment with him until the middle of April. When the day to see him came, I was anxious. What if he says I'm not a good candidate? What if he says it won't work? Luckily, he put those fears to rest and said we can give it a go. Unfortunately, he wants to shave my whole head and instead of inserting the wires behind my ear, which is common, he wants to do one on the side of my face and the back of my head, so I will have visible scars. I was emotional and scared, but it has all set in and I'm ready to do anything to get rid of this pain. I am tired of crying and not being able to be a "normal" 25 year old.

Dr. Boggan told me his schedule was full for six months, but he was hoping to get me in by June. That made me happy because I could finish off my school year and spend some more time with my boyfriend and friends. Then I got a phone call a few days ago saying that they have my trial set for May 6th, and if that takes away my pain, I will have the battery inserted May 13th. I was shocked, scared, elated, and rushed. Luckily I was able to finish school early, pack my car with everything I could think I would need for 6 weeks (the approximate recovery time), and drive from Nevada to my mom's house in Sacramento. Tomorrow I have my pre-op appointment, and then surgery on Friday. My biggest fear is this won't take my pain away, then what do I do? I have my fingers crossed...
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