Jacob, the rep, is amazing. He has given me more support and more information in the last two months than Chanie has in the last year. It hurts me to realize that perhaps Chanie just wasn't who I needed on my side during this process. Jacob started Wednesday by asking how much pain relief I'm getting, and sadly the answer is 60% at best and only 20% when my headache peaks over a 5-6. This is a dramatic reduction from when I had the stimulator implanted in May '11. Jacob was not happy to hear this information. Then he started checking my program and looked even more unhappy. He's not exactly sure what's wrong, but an electrode is hitting a nerve and stimulating the wrong area. He explained that I have 4 electrodes that run along my left eyebrow. I have spent hours with Chanie and done days of research and never knew that. Anyways, 4 electrodes just aren't enough, there should be 8. So why do I have half of what I need? My neurosurgeon is old school and that's just how he does it. Wait, what? Oh yeah, by the way neurosurgeons aren't really the ones who should be doing the nerve stimulator surgery, that's the job of pain management doctors. They seem to have more success, are more cutting edge, and their patients need less revisions. Wait...WHAT?!
My head was spinning. Why didn't Chanie tell me this stuff? I can forgive that this wasn't a conversation last June during my first revision. But the fact that this wasn't brought up when I needed another revision only a few months later is ridiculous. Now Jacob isn't saying I need another revision for sure, but if the new programs aren't working then it's a possibility. Well the programs aren't working. He wants me to give it a month, and I will, yet it's something you know pretty instantly.
What to do now? I'm back in Reno for a visit and I have a call into a Medtronics rep here to get his view. I've never met him, but I feel at this point the more opinions I get the better. Perhaps that was my original problem: I genuinely believed my neurosurgeon was the best and didn't consider other options.
I have already found a new surgeon- meet Dr. Dakota
When I first started researching Occipital Nerve Stimulators I read about a woman who ended up having 9 surgeries. I thought to myself, "Ha! Who does that? It will never happen to me!" But now I can honestly see it happening. I want a pain free life, or at least manageable pain, and I will do everything in my power to achieve that. However, these surgeries will not define me. I feel like I will give it one more go in the next year and be done. My body can't handle much more, not to mention my emotional health.
Aaargh. That must be so frustrating. Love your new doc!
ReplyDeleteOh wow. Hopefully you won't have to, but if you do have to have another revision, I have heard that people have had wonderful results with the 8 leads. That is what my surgeon was going to do, if I can ever get it approved that is.
ReplyDeleteI had a nurosurgeon put a nerve stimulator in my neck and instead of help it is worse. The programs make the pain worse. Now, what am I to do about going through the pain to have it adjusted- which may still not help- or have it removed. Is there a Doctor out there that knows what they are doing with this devise. It has been 4 years of constant pain.
ReplyDeleteHelp!!! Sherri at shermogil@hotmail.com
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