I've gotten some fairly negative reactions from people when I describe the procedure I've decided to undergo. They act like I'm insane for allowing someone to put wires in my body, along with an implanted battery that will leave a big scar, and still have to be replaced down the road. But these are the people that don't seem to understand the pain I'm in...that without a nerve block or some other form of intervention, my pain is so bad that I am non-functional. I can do nothing other than lie in bed. And as I've already discussed, the nerve blocks only last a week so that is hardly a solution.
No, occipital nerve stimulations specifically is not FDA approved, but very similar procedures are and that's good enough for me. Botox isn't FDA approved for headaches either but I've tried that and found relief in it so this FDA approval thing isn't a hang up for me. Do I really want to go through surgery? No. In fact I'm scared to death. I've had to take anti-anxiety medications the last few days just so I don't lose my mind. Do I really want a 2.5 inch scar across my chest for the rest of my life? No. I'm only 28, I still have a few years worth of being vain about my looks left. But the thought of having to live with this pain scares me more than any of these other things. And anyone that questions this decision has obviously never dealt with chronic pain, nor has been in severe pain long enough to make them desperate for options.
Are there other options out there? Yes...and no. For those that don't want something implanted in them, radiofrequency lesioning is an option, but again, it's far from permanent. It only lasts about 6 months. Not an option for me as I live 1000 miles away from the doctor that would do it for me. And there are smaller neurostimulators in the works, such as the BION stimulator, but these aren't readily available to patients yet as they are still undergoing trials. Maybe in another year or two they will be, and will be a great alternative to these bulky traditional nerve stimulators but I can't wait a year.
Another upside of the occipital nerve stimulator is that it's completely removable. Sure, you'll still have scars, but if something changes, and you don't need or want it anymore, it can be taken out. I have a feeling mine will be in for the rest of my life, but I know that for some people, the idea of reversibility is appealing.
But I think the best thing about this implant is that they do a trial run first. They put in some wires for 5-10 days to make sure it actually works for you, and if it does, then they implant the whole nerve stimulator, battery and all. But if it doesn't work, you are not stuck with a surgery and an implant that are worthless...all you have is a few scars under your hair that no one will ever see, and you can move on to the next option for headache treatment...if you have any more options.
So I guess I chose occipital nerve stimulation out of a lack of other options, but also because I think it's the only thing out there that will work for me. I haven't come across any other option that seems to promise the same relief that this implant will. Surgery, implants, wires...the whole thing scares me. But having this pain any longer scares me even more. I am ready for this.