Supraorbital & Occipital Neurostimulator Implant Surgery
On July 15, 2016 I had surgery to implant a Neurostimulator with bilateral supraorbital and occipital leads. This surgery followed a successful external trial about a month prior. The surgery went well. I am told, but the surgeon and other clinical team members that the "tunneling" of the wires was somewhat challenging due to an especially tough layer of "grizzle". So, thankfully, I was just about completely out for most of the tunneling.
Recovery was pretty quick for me, considering the amount of physical force required to get the wiring in place. Most importantly the Stim is working great! Conservatively I would put the improvement at 70%. The frequency is still up there, but the Stim is successful in masking nearly all of the migraine pain for most of my migraines. I have cut use of abortive/rescue medications by 80% to 90%! This is amazing!!!
I have lived with Chronic Migraine for so long that I am uncertain what to do with this gift. I am so accustomed to getting home after work in a beaten, drained, weary state (not to mention the migraine itself) that I am somewhat befuddled with spending a full day in the office and getting home feeling good. This challenge is one that I am gladly working on! As I told coworkers today, working through what to do when I feel good is soooooooooooo much better than digging and scraping for bits of personal strength to get through another day!
I plan to share updates as things move forward. Please do post any questions, comments, etc. here and I will gladly respond! I know, from spending so much time in clinics and with neurologists (and other caregivers) that each person is unique and responds differently to treatments. A Neurostimulator implant is, I am sure, not for everyone. It is certainly an invasive treatment! For me, having spent more than two decades battling Migraine and Chronic Migraine, this appears to be a hugely effective treatment!!!
I look forward to sharing more as I move deeper into these less painful & pain-filled waters! Migraine is still with me, but it is now in a much smaller box with a lock that works most of the time!!!!!!
I have a consult next week for the Omega procedure. I'm interested in hearing more about your experience. Are we able to send private emails on this site?
- Glad to hear how well you are doing. I had mine implanted in 2011 and the first year was an absolute dream come true after so much pain for so long. Since then I've had some ups and downs but the rep who does my adjustments is AMAZING and so patient. She would reprogram me everyday I think if I needed it. The one thing I have learned is if you have a question or concern, call your team and ASK. Our nerves are constantly adjusting to sensations and inflammation along with about a zillion other things going on in your body can all cause your stims effect to be great one day and sub-par the next. Your team can and should help you through as you navigate the crazy change that is migraine relief. - Good luck! It is all a lot to take in, especially that first visit. No worries though. If you are a candidate, once you stop hyperventilating about the actual cost, the process is smooth and easy. They have you 'try before you buy' so to speak and if it's a go, it is a simple day surgery. You should heal quickly and be able to get back to your day to day life in a minimum of days. And the relief? Divine! Seriously, they hold your hand and talk you through the entire thing. Feel free to contact me if you have more questions. I just got insurance approval today for my Doc to replace my battery with the nice tiny one y'all would be getting and I look forward to that. Looks like we are fellow Texans too. Be well. This is the end of the 4th week since the implant surgery. I would say that I am pretty much healed from the surgery. The incision point where the "brain" of the implant lives is no longer sore when I have to hold the charging surface against it. And when adjusting the settings I have to push a bit to make sure I hold the sync piece at the right spot.
The implant continues to work well! I still get some migraines, but they are no longer every single day! And, many of the migraines I do get are completely managed by the Stim, with no need for medication. I could not be happier with the Stim!!!
Great points about nerves adapting to the Stim signals. I spoke with the Medtronic rep before the surgery about switching the programs and settings so that my nerves do not adjust. I have been doing that these four weeks. I change the program every couple of days. What I have found very successful for the annoying "morning migraines", those that are present when I awaken, is to switch the program and settings before I go to sleep. There seems to be something about switching things up before I fall asleep. This does not work every night/morning, but more often than not it does!
As I have said before, so far this is SUPER!!! Feel free to post any questions here and I would be glad to answer!
Hi! So glad I found you 😀, I realize this is a very old post, but I'm hoping you still get notifications when questions are asked.
My doctor just told me we are at the point where we should start discussing implants. Super scary AND I've read so many horror stories about leads moving, battery packs burning...etc.. BUT I know there are just as many successes as there are failures. As I researched it appears Insurance does not cover these procedures (or at least not the device and maintenance). Can I ask how much that ended up costing you? That alone would be the end of the journey for me.
Thanks. Hope to hear from you soon.
Dana
Hello,
Yes, an old post but I do still get email notifications. So, I had and still have Priority Health insurance. Because I had worked through so many other (failed) treatments along the years, PH did approve the procedure. The surgery was scheduled for 90 minutes, but there were some challenges which caused it to go more like three hours. I think the grand total was somewhere North of $70k. My part ended up somewhere between $8k and $9k, which the hospital system allowed me to pay via a payment plan. It took me a couple of years to pay, but it was definitely worth it for me!! As for leads moving out of place... none of that for me. No "burning" of the battery pack placement. Once in while I can feel the pack or the wiring/leads a bit more than usual, but again, minor stuff. I have no ongoing services for maintenance or up-keep on the hardware. My neurologist has contacts at Medtronic and would pull them in if there were any issues. Continue to be doing SUPER with this! My chronic migraine is now something more like one moderate migraine once every three to four weeks. Every so often I will get a severe migraine, but those are rare these days.
I hope this helps.
Hi
Great to hear that you are having such great results from your stim!
I had a supraorbital and occipital nerve stimulator implanted about a fortnight ago on my right side. I am having good results from the stim with it pretty much getting me off the pain medication and only needing to take imigran when a bad migraine hits.
I am having difficulty moving my right eyebrow (it seems to be sitting lower than my left eyebrow but not significantly), particularly towards the centre of my forehead. I am having trouble raising my eyebrow and frowning.
Was this something you experienced or have heard of? And if so, did you get full movement back and after how long? I am hoping it is just trauma from the surgery and will heal with time, as some of the lead placements are still tender.
Any advice or information would be appreciated.
Thanks
