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Supraorbital & Occipital Neurostimulator Implant Surgery

  • By Chris Hicks

    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!!!!!!

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  • By paultxrn

    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?

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  • By SuperAl

    @chrishicks – 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.

    @paultxrn – 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.

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  • By Chris Hicks

    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!

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  • By yazzzy

    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

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  • By Chris Hicks

    Yazzzy,

    I had some minor issues with movement of eyebrows, mostly due to inflammation. As I healed up from the surgery those issues disappeared. This happened within a couple of days. Now I do not notice any problems. On a related note, I did have issues with raising eyebrows when I was getting Botox injections a couple of years ago.
    As for coverage, I do notice slight differences between the right and left supraorbital leads (more intense on the left). Again, this is not significant, just means I set the right lead a bit higher. In order to keep the implant to one Stim/battery, I have a single lead in the back (occipital) that covers both sides. This was initially almost entirely felt on the right side. A couple of weeks after the surgery it evened out so that it now covers both sides about the same.
    I do not really notice any tenderness around the leads. I do, however, notice that wearing glasses, a hat, or simply pulling a bit on my scalp can dramatically effect how I feel the stimulation.
    Like you I have significantly decreased my use of abortive medications. Once or twice a week I still experience migraine that goes beyond what the Stim can cover. I have experimented with medication and find that I turn to Frova once a week, or less, to cover the worst. Over this past weekend I was able to completely drive out fairly significant migraines with the Stim (no medications). This took several hours, but it was great to achieve such relief without medication!
    Having said that, I am getting back with outpatient neurologist to see about trying some preventative medications. Going from daily top-of-the-scale migraines to near daily mild / moderate (extremely short-lived) migraines is a GREAT thing and certainly counts as success for the Stim!!!! I am hopeful that the Stim has changed the landscape and that some preventatives that were unsuccessful in the past will be more effective now!
    Feel free to post any other questions.

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  • By Chris Hicks

    It has been just about eight weeks since my neurostimulator implant surgery. There have been some up’s and down’s, but by far this has been a huge positive! Although I still experience migraine it is much less intense, less frequent and each migraine is much, much shorter in duration. I have also been able to drastically reduce the need for and use of abortive medications. All too often I hear the use of the phrase “life changing”. In this case I find that it is the most accurate phrase to describe my life, post-implant. Truly, my life has changed! I would more accurately say that I now have the chance to have a life (beyond dragging myself to work and back home to hide in darkness). The neurostimulator implant is life changing for me! Next post… Why did I create a spreadsheet to track my share of the surgery fees!?! (Completely worth it… And thank goodness for payment plans!!!).

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  • By Mississippi girl

    I have been suffering with migraines and been in and out of Er. I have tried many many different meds and just got nerve block in my neck and head. I am wanting a consult for the stimulator due to my quality of life at this point is none. I am in the bed with these migraines from 1-4 days and nothing seems to help. I cant find a Dr near me that does the Omega , I am from Mississippi but willing to go out of town if my insurance will approve it. Please help point in the right direction. I am at my breaking point .

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  • By DonnaFA Moderator

    Hi, Mississippi Girl, please know that we hear you and that you are not alone. A good place to start is Is It Time For a New Migraine Doctor?. A quick glance shows that there are four doctors in Mississippi. If you happen to be close to a state line, you may also want to check the neighboring state.

    You may also want to read some of the articles on the site that deal with other surgical treatment alternatives.

    I’d also like to invite you to our Facebook page to join the conversation and find fellowship anytime you need us. We’ll be thinking of you. -All Best, Donna (Migraine.com team)

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  • By Diane

    I am way behind on even hearing about this. Finally picked this topic to read. None of my primary care doctors or the physiatrist has mentioned this. I will ask at next Botox. (Which I’m not real sure helps anyway). I’m afraid to ask for Neuro consult as they might take away the meds that partially help. I live in central Illinois (Peoria) – Should I give in and ask for neuro consult and live with consequences? Worried to ask.

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  • By Monkeybrew

    Diane, I am sorry to hear of your worry and anxiety. These feelings, on top of the migraines… ugh! I can tell you that the neurologists that I worked with over the years were critical to the ultimate success that I have found with the implant! I would add that neurologists who specialize in treating migraine are the best route if there is someone like this relatively close to you.
    As for your primary care physician and psychiatrist not mentioning a neurostimulator implant, well that does not surprise me. The implant only came up in discussions of treatment options after years of attempting to treat with medications, nerve blocks, hospitalization and other treatments.
    I would not fear that a referral to a neurologist would necessarily mean that medications would be taken away. It may mean adjusting and tweaking medications used for prevention and rescue. The goal of any change would be improvement and not loss of relief from medications that may be working.
    I encourage you to be informed (get online and research what providers might be in your area, what migraine treatment centers are relatively close to you). I would also encourage you to ask about a referral to a neurologist that specializes in treating migraine. Finding a qualified neurologist to work with is a good thing!
    As for the anxiety, it is only nature to feel some amount of anxiety when thinking about shifting one’s care from providers you know and have worked with (possibly for years). I would say, from experience, the best results I have found have come from finding and working with the right specialists!

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  • By yazzzy

    Thanks for the feedback, particularly in relation to eyebrow movement. It’s been about nine weeks since I had surgery and things are going well. I’ve only had two major migraines in that time and significantly reduced my use of medication.
    I definitely agree that the stim feels different on each side and I’m guessing this is the same as each person having different effectiveness from the stim. I’m still having difficulty moving my right eyebrow. It’s odd it just won’t move, it’s not even like Botox where it won’t move but I can see all the muscles working to try and lift the eyebrow but with no luck. I’m hoping over time it will get movement back. I’m going to raise it as a concern at my 3 month post op check in.
    Monkeybrew, I definitely agree that consideration of a stim is usually a last resort after everything else has been trialled. I’m in Australia and it was only by luck that I came across a neurologist who had heard of It after 10 years and goodness knows how many second opinions. Definitely trial all other options before considering a stim, as it is an somewhat invasive surgery.

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  • By sixjs1

    I get migraine. My 27 year old daughter has had RX of migraine since age 2 years. My daughter has been through the preplanning for the implant and is a good candidate but has not followed through with the next steps due in part to concerns if implanting the device and I know. Fear it won’t work. Your descriptions of your chronic migraine lives describes her life as well. Can anyone give words of support and encouragement for /to her? Your success stories are what I know she desires and and are what I have wanted for her all these years. Thank you!

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  • By Monkeybrew

    An update… In July of 2016 I had a neurostimulator surgically implanted. About a year out from that surgery I noticed that the frequency and intensity of my migraines dropped, significantly! I went from severe migraines daily to mild to moderate migraines once every week or two!

    It is as if the stim re-wired long-standing patterns of migraine!

    I still see a neurologist and I am currently taking just one prescribed preventative medication. I have another prescription for an abortive medication. This is so radically different than having up to four preventative medications and a whole toolbox of abortives!

    For me the implanted neurostimulator has been a miracle!

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