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Surgical Options

Occipital Nerve Stimulation

  • By Lynsi

    I have been diagnosed with new daily persistent headaches and have had a migraine since February 2013 with not one single day of relief. I have tried everything, been hospitalized at the Diamond Clinic in Chicago, Botox, every type of medication you can think of, acupuncture, etc… Well, I went in for a nerve block yesterday since the doctor told me if I respond slightly to the Occipital Nerve Block, I could start talking to him about having Occipital Nerve Stimulation surgery. My pain level has decreased from a level 7 to a 5 in just 2 days which is the best I have felt in a long time. I guess what I am asking on here is, has any one had this procedure completed before? I know about the trial process and how it can be pretty invasive. I have watched so many YouTube videos, it’s ridiculous. I just need to know patient experience and how it is working for real people. I am really kind of excited about it since this might be a great step for me but I have also heard it can be a tad bit expensive since insurance doesn’t approve it very often. Thank you so much for your responses! Hope one day there is a cure for all of this!!!!! Happy Holidays and Merry Christmas!

    Lynsi

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  • By Katie M. Golden Moderator

    Lynsi,
    I have not had this procedure and have hears mixed results. Seems like the best you should hope for is a reduction in the Migraines and be able to manage them better.

    You may want to visit this link below. Another community member just had one put in this summer and had great results. Also in this forum is a link to a blog discussing someone else’s journey.

    I hope this helps!
    Katie
    Migraine.Com Moderator

    https://migraine.com/topic/neurostimulator-implant-surgery/#post-56359

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  • By Katie M. Golden Moderator

    Lynsi,
    I have not had this procedure and have hears mixed results. Seems like the best you should hope for is a reduction in the Migraines and be able to manage them better.

    You may want to visit this link below. Another community member just had one put in this summer and had great results. Also in this forum is a link to a blog discussing someone else’s journey.

    I hope this helps!
    Katie
    Migraine.Com Moderator

    https://migraine.com/topic/neurostimulator-implant-surgery/#post-56359

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  • By Kim Leonoudakis

    Hi Lynsi,
    I’ve have a neuro-stimulator implant. My surgery was July 2013 and I am extremely happy. You can see my story called A Migraineur’s Life posted December 2014. Check out reedmigraine.com. Let me know if you have any questions.
    Good Luck!
    Kim

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  • By Jackie

    Hi Lynsi,

    I have also had occipital lobe implants and now I am seeing a neurological surgeon to put more wires across my forehead. It turns out I suffer from chronic and classic migraines. I will have to fight with the insurance again to cover the surgery. Erdington5

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  • By GinnyBinny

    I’m waiting to have the permanent stimulator put in ( the VA is covering mine thankfully so no fighting with insurance companies) I had great results with the temp one and I’m just wondering if the results taper off over time thanks 🙂

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  • By Kim Leonoudakis

    Hi,
    I’m still happy with my implant. I have 4 leads, 2 are over the occipital nerves and 2 are over the supraorbital nerves. Mine will be 2 years in July.

    Lynsi, even if you don’t respond to the occipital nerve block a neuro-stimulator implant could still help you. I was told that the implant is so different that it doesn’t matter that nothing else worked. I tried everything. I have had chronic daily migraines for 20 years.

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  • By Monkeybrew

    I see that this thread is a bit aged, with little in the way of recent comments. I hope that updating it with a new comment will spark others to contribute.

    I am about five weeks away from an external trial of a four-lead Neuro-stimulator (bilateral supraorbital and occipital lead placement). I have experienced daily migraine for well over a decade now. I have worked with several migraine specialists and have not found any treatment that brings about any significant relief. I am hopeful that the stimulator will be able to reduce the intensity and frequency of the migraines. The only potential obstacle at this point is my health insurance. The clinic I am working with on this has just submitted the prior authorization to my health insurance, Priority Health. I am told, by the surgeon and support team members that PH is usually pretty good about approving this procedure.

    Honestly, it has been so long, I am having trouble seeing what a future not ruled by migraine would look like. I certainly hope I get the chance to see such a future first-hand!!!

    I would appreciate any comments, questions and/or feedback.

    Take Care,
    MB

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  • By hoganj

    Hi MB
    My son has suffered from refractory migraines for over 5 years. He rarely leaves the house, can’t work and is within a semester of completing his degree but can’t finish because of the debilitating pain. He has been to several doctors, is currently being treated at Mass General Hospital, has tried every medication, Botox, acupuncture with no relief. He is 29 years old.
    How are you doing since your implant? I hope you have found relief.

    Thank you for sharing your information

    Hoganj

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