Making Difficult Treatment Decisions: Occipital Nerve Stimulation & Chronic Migraine
Occipital nerve stimulation for chronic migraine is a subject of a great deal of interest among the Migraine.com community. As a chronic migraineur myself who hasn't responded to any treatment or medication in the past nine years, I wonder if it might be a good option for me. But there are so many unknowns and factors to consider that I have a hard time wrapping my mind around whether it's something I want to explore.
Whether you're trying to make a decision about occipital nerve stimulation or some other treatment option, I hope my exploration of my dilemma might allow us to start a dialogue on how to make these kinds of difficult treatment decisions.
About four years ago I'd tried tons of medications and other treatments and just failed a radiofrequency nerve ablation procedure that we'd hoped would help with my chronic migraines and occipital neuralgia. The doctor who performed the procedure suggested I had three options left to explore: (1) a referral to a behavioral pain management program (which I did and benefitted from immensely); (2) a referral to the Michigan Headache and Neurological Institute to see if I was a candidate for methadone (holy crap); and/or (3) try an occipital nerve stimulator.
I did some reading about methadone and quickly realized that was not going to move me in the direction I wanted to go in because it would most likely make me less functional, rather than more. So I rejected that option from the get go.
As I mentioned above, I accepted the referral to the behavioral pain management program. Although I started it reluctantly and with a bad attitude, it helped me immensely in learning how to cope with my situation. I'm eternally grateful both for the referral and the program itself and the wonderful staff there.
I have read as much as I can about the occipital nerve stimulator procedure, including medical research, blogs written by people who have had the stimulator implanted, Facebook groups and anything else I can get my hands on.
But I still can't pull the trigger on deciding on a short list of doctors to visit for consultations. I'm just not convinced it will be worth all the expense of traveling multiple times to the doctor I choose to have the trial simulator and eventually the permanent stimulator implanted. Not to mention the pain and recovery associated with those procedures. I question whether I'd benefit to such an extent that all that would be worthwhile. I also worry about the fact that even if the stimulator helps you things can go wrong somewhat easily because of slipping of the leads, scar tissue build up and other common issues.
Maybe this means it's not right for me right now, and that's okay. But some part of me also feels like I'm not trying hard enough to get better if I don't try every single option presented to me.
Have any of you dealt with this kind of difficult treatment decision? How did you make up your mind? Did you have any regrets when it was all said and done?
Can you tell when a migraine attack is coming?