My stimulator is great. I feel bad that I don't post much anymore, but there's no need to rehash subjects on which I've already written, continuing to say "I'm doing great." I really have no complaints and I forget I have it most of the time, to be honest!
That being said, I figure I might as well give an update as I've now had this thing for over 4 1/2 years.
If I had to give my stim a number, I'd say it has reduced my pain by 80%. I still have a baseline daily pain level of a 2 or 3, but that's completely acceptable. It's small enough that it doesn't slow me down and I can ignore and/or forget about it. Sometimes, my pain is actually gone entirely and that is an amazing thing.
Was the stim worth it? ABSOLUTELY. My only regret is that I didn't get it sooner! If I had to go through it all again, I wouldn't change anything. This has by far been the most successful treatment I've ever tried my pain and it is an overwhelming success.
I'm no longer on any daily preventative medications for headaches. No more heavy neurological drugs that have terrible side effects and make me feel like a zombie. No more worrying about if/when my liver and kidneys will be affected. I do still have rescue meds (Zomig and Cambia) for days when the stim doesn't quite cut it but those days are much less often than they were before the stim, and their severity is greatly reduced. I can't tell you the last time I had a headache bad enough to make me vomit or send me to the ER.
Since my leads are fully scarred in, I really do not have any restrictions on my activities. I've resumed my favorite activities including horseback riding, skiing, and swimming. I also get weekly chiropractic adjustments and massages. However, in the spirit of honesty, my doctor does not like that I get adjustments. She does not recommend it to stim patients and I'm aware of this. I really shopped around for a chiropractor before choosing one, which was very important. The one I chose is excellent and I trust her absolutely. That cannot be said of all chiropractors I've ever been to though so if you do choose to risk chiropractic adjustment with a stim, go to the best, not the most convenient or the one you've known the longest. Personally, the relief I get from the chiropractor (for occipital and neck issues) is worth the risk. But that's a decision everyone has to make for themselves, of course.
Besides the one optional revision I had several months after the initial implantation, I've had no need for any revision. All my wires and anchors have stayed in place, which I attribute to my wonderful surgeon but also to giving things a good long time to heal. At this rate, I think the next surgery I'll have for the stim will be to replace its battery, and thankfully that's still quite a few years down the road (knock on wood).
I've not had a lot of need for reprogramming either. I think I've been reprogrammed three times ever, and I've always waited until I go to Chicago to have it done there. I've never had to see my rep in Wyoming. To be fair, I'm not sure this is actually normal. Most people need quite a bit of reprogramming in order to get the most out of their stim. But most of that programming will probably be within the first year or two. Once you get it set right, you should be able just to leave it alone.
If you have any other questions, drop me an email or a comment on this post and I'm happy to answer. I think this post covers most of the most frequently asked questions.
I may not update this blog much, but I'm on the PNS/ONS Facebook group daily. We have over 600 members (!) from around the world. It has become an amazing resource. Plus then you can hear experiences and opinions other than mine! If you or someone you know is considering getting a nerve stimulator to treat headaches, I highly suggest you join the group. It's much more active and comprehensive than this blog. But as always, I'm available via email. I may not post much on this blog anymore but I still check the email address attached to it regularly.