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Spinal Cord Stimulators

  • By Dana

    Has anyone had a spinal cord stimulator implanted to help with their migraines? I’m not talking about the Reed procedure, I’m talking about the one’s used “off label”. I’m in pain management and the doctor wants to place the Nevro hf10, it is used very often for migraines because insurance generally doesn’t approve the Reed procedure. Looking for anyone who has been through this and what the outcome was…good/bad/ugly.
    Thanks….Dana

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  • By Allyson.Ellis Moderator

    Hi Dana, thank you for reaching out! I hear how much you endure with migraine symptoms. It is miserable living without a treatment to help manage your symptoms. I hope others in the community who have experience with a spinal cord stimulator will chime in to share their stories with you. While you wait, I thought these articles might be of interest:
    https://migraine.com/blog/nerve-stimulator-study-shows-potential-benefit-for-chronic-migraine/
    https://migraine.com/living-migraine/neurostimulation-device-experience/
    Please keep us updated on what you decide to do! Wishing you a gentle day. ~Allyson (Migraine.com team)

    reply
  • By Andy69W

    I, too, am trying to get the Nevro HF10 for migraine and related nerve conditions. My insurance denied the initial request stating that the technology is only in it’s investigation stage for migraines. My pain management Dr. and I plan to appeal the decision.
    I know this doesn’t answer your question but I hope it helps to know that you are not alone in this search.

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    • By Dana

      I’m sorry your insurance denied it, I’m waiting to hear but do have the trial scheduled for the end of July that way I won’t have to wait while the insurance decides.
      Do you plan to appeal?
      How long have you had migraines? What kinds of treatments have you had?
      Sorry for the inquisition!
      Dana

      reply
  • By Andy69W

    I have no problem answering questions. Maybe there will be something informative or maybe not 🙂
    I contacted my doctor’s office and asked their opinion. We will appeal. I’ve had my migraines since I was a child. The earliest memory of one is at about 6 or 7 years old. My “migraines” became daily in 2017. My pain management doctor recently diagnosed Cervicogenic Headaches (CEH) on top of migraines. The CEH is why they want to at least try a spinal cord stimulator (they want to use the NEVRO HF10 stimulator).
    As far as treatments go; I’ve tried most medications without results. Even the Amovig injections were a bust. Botox injections, trigger point injections, nerve blocks, Facet joint injections, a 5 hour infusion of Ketamine and the most recent was an Epidural Steroid Injection.
    I’m still hoping the insurance can be swayed to accept this treatment. It’s more prevalent than they want to admit.

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    • By Dana

      Andy69w,
      Do you have any shoulder or pain that radiates down your arm? I was told it is better if you have that as it is easier to get it approved that way. The one time the extra pain I have is a bonus 🤷‍♀️🤦‍♀️

      reply
    • By Andy69W

      I don’t have arm pain but I have some weakness in one arm. I’m not sure if the two are related or not. I also have arthritis and bone spurs in my C-spine area.

      reply
    • By Peggy Artman Moderator

      Andy69W,
      It sounds like you have been through a lot. Finding treatments that work can be very difficult for certain people. Adding the troubles of your insurance company only compounds the situation. This must be frustrating.

      I have tried many therapies that haven’t worked too. It sounds like you have been diagnosed with other issues as well and that can make things tricky.

      I hope that some more community members that have experienced what you have will chime in.

      reply
    • By Dana

      The weakness may make a difference, sometimes is all about the way it’s coded when sent to the insurance company. Try talking to the doctor again. Keep me posted.
      I have my pysch eval next week, so mine hasn’t even been sent to insurance yet.
      😬

      reply
  • By beachbumgirl

    Hi Dana and Andy-
    I’m a 51 yo with hx of chronic intractable unilateral migraine on left side of face and behind left eye.
    I have tried everything and was referred to a well mannered Boston
    Neurosurgeon dr. Jeffrey Arle today. He believed he could help me!! 🙏🙏🙏. That is what i was hoping for. So my next step is to meet him at another one of his offices on July 1st. He will use some novacaine and set up some
    Small leads about my left eye and Dow my left cheek. This is part of a trial.

    Then it continues from their.

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  • By Peggy Artman Moderator

    Hi Beachbum Girl,
    Thanks for reaching out to us!

    I understand how it feels to think you have tried everything. I am so glad you have found a new doctor that wants to help you.

    The only thing I can recommend is to ask your doctor any questions you may have about the stimulator. Maybe he can show you the results of some research studies before you have to commit to the final procedure.

    We wish you well in your quest to reduce your pain. Please keep us posted.
    ~ Peggy

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  • By beachbumgirl

    I will Peggy. If this can help anyone else, I hope it does.

    reply
  • By Peggy Artman Moderator

    You are very welcome and I hope this will help someone else too.
    ~Peggy

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  • By beachbumgirl

    I had my visit with my neurosurgeon. My migraine pain
    Comes directly from left eye only.
    The stimulator he currently uses is
    Boston Scientific.
    Has anyone here tried this brand?
    He placed external leads above my left eye and it immediately took the
    8/10 migraine pain away. Crazy!
    That is the only trial I did.
    I plan to call the rep of Boston Scientific Next week to discuss a longer trial.
    Otherwise, if I choose, his next
    Surgery date for the permanent implant is August.
    I will decide after I get more questions answered.

    Dealing with a 7-8/10 daily is really
    Not fun! Realized it again yesterday
    When my husband and I went up north to see my son and his fiancée. Migraines do not like anything besides sitting in the house 🤨

    Happy July 4th to All!

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  • By Dana

    Andy69w,
    Have you had any luck in the appeal process?
    Dana

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    • By Andy69W

      I’m just getting started with the appeal process. I wanted to get my doctor’s opinion. I’ll try to keep everyone posted with updates.

      reply
  • By Dana

    So my trial was approved!
    My surgery date is July 24th.
    Here goes nothing 😬🤕🙏

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    • By beachbumgirl

      So happy you are approved for your trial! I will be routing for you.

      reply
  • By Peggy Artman Moderator

    @dana, that’s great that this new treatment option has been approved for you! Please keep us posted on how you are doing after the surgery. We wish you all the best!

    ~ Peggy (Migraine.com Team)

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    • By Dana

      Thanks Peggy!
      Will do

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  • By Andy69W

    @dana I hope everything goes perfectly and that you get the relief you need.

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    • By Dana

      @andy69w,
      Thanks. I will let you know how it goes and I continue to send positive vibes your way in hopes that you get an approval.
      We all deserve some relief.
      Hugs,
      Dana

      reply
  • By Dana

    @andy69w,
    Had my trial placed 7/24 and they have delayed the removal twice. It is officially coming out tomorrow (Friday 8/2). It’s been an interesting experience and it will definitely be something I will have to consider long and hard before I make a final decision. Have you gotten anywhere with yours?
    Dana

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    • By Andy69W

      @dana I’m still playing the waiting game. I hope you got some relief with the stimulator.

      reply
    • By Dana

      @andy69w,
      Waiting is the worst, I will continue to keep you in my thoughts and keep my fingers crossed. Please keep me posted. I would love to see how it’s works out for you.
      Dana

      reply
    • By Dld516

      Dana, After Reading Many of Your Kind, Supportive, and Very Much Appreciated “Non Sugar Coated” Words. Thank You.
      I too Had a Spinal Cord Stimulator, Sorry to Say the Biggest Surprise I got From It was when I got Close to the Back of My Jeep Where Radio Speakers Were It would Turn Itself On at the Most Intense Setting. This was a Result from the Magnets on the Speakers. So, I suggest keeping Your 🧲 Magnet with You. Mine has since been Removed during a Surgery to Replace Broken Hardware.
      I have been Prescribed Emgality, and will begin Injections next Week. If You read My Story, You Will See We both Have Been in Pain A While.
      I Pray for You Relief from Pain.
      GOD BLESS YOU 🙏

      reply
    • By Dana

      Dld516,
      Maybe you could send me the direct link to your Story, as I couldn’t find it (I’m not all that tech savvy, if I’m honest). I only had the trial done, it was the hf10 Nevro. It was in for 10 days and deemed unsuccessful. Your story is wild! How long ago was that and which (I’m drawing a blank) thingy?? did you have?
      I tried Emgality, November 2018-March 2019. I know so many people have had success with that, I hope you have the same luck.

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    • By Dld516

      Mine was Boston Scientific Device. I had it for approximately 4yrs. It was removed during a Broken Hardware replacement Operation.
      That was in 2014, My Headaches didn’t begin until August 2018.
      I too am not “Tech Savy”, Maybe one of the “Mirgraine.com” People will see We need assistance linking stories.
      Help: Please Provide Dana with a link to Dld516 stories.
      Thank You All
      God Bless

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    • By Dana

      Dld516,
      I have a friend with that, hers is in her forehead only. By your picture, I’m guessing the SCS was not for migraines. Do they think the migraines are related to whatever cause you to need the SCS in the first place?

      reply
    • By Peggy Artman Moderator

      @Did16, the way we link conversations with you is by using the symbol @ before the person’s name. So try that before any of the names so at least you will get linked in to this conversation.

      I don’t know what else to say except that we understand and care. I really hope Emgality helps you. Some people get amazing results and some have little or no results. I really hope the Emgality helps you even if just reduces the frequency and painful the migraine attacks are. We welcome you to come back and share your continual journey.

      ~ Peggy (Migraine.com team)

      reply
  • By beachbumgirl

    Good morning today from early in the spinal stimulator world. ☕️🌞. I had a Boston scientific scs implanted yesterday.
    No Issues from the surgery, just a hard time getting an IV in.
    That happens all the time. I was in a lot of post op pain after surgery so I was not always listening to the rep and his introductions. He said we could talk more on Monday August 19th about it.

    The post op pain is a little sore and the migraines are always the but not at a 9/10.

    Interesting to see what happens. 🌼🌻

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  • By Andy69W

    Update: Just received my second denial letter from insurance. I will appeal to the NC Department of Insurance if my pain management team think it is worth pursuing. And I think there may be a peer-to-peer conference between insurance and doctors. I’m not giving up hope yet. I’ve been trying for disability since 2017 so I’m use to things taking a while when dealing with the powers that be.

    ✌ and 🧡

    reply
    • By Peggy Artman Moderator

      To al, this has been a long and complicated process go all of you. I wish everyone the best and please keep sharing your stories to keep us updated. Best wishes for a lower pain day.
      ~ Peggy (Migraine.com) team

      reply
  • By Dld516

    At the beginning Neurologist did. Because I developed a tear in my Spinal Canal. In Neurosurgeons Words I had a Pool of Spinal Fluid in My Lower Back.A Leak like this causes a Low Pressure Headache in any Body Position except Laying Flat.
    First attempt to repair tear created a bigger tear. Second attempt was successful in Repairs. But the Headaches continued and got worse.
    Then Neurosurgeons with all Their Wisdom and Knowledge decided My Body had been over producing Spinal Fluid. To Compensate for The Leakage. Now, I’m suppose to be having High Pressure Headaches. So Shunt and Drain was put in Place. After that I still had a Headache, only Worse.
    It’s Now One Year Later.
    After, A lot more Scares. A lot more Travel Miles. Many Different Doctors, Neurologists, Neurosurgeons, ER’s Hospitals, Test and Drugs. Being Told everything from, You just can’t come here and expect us to give you Pain Meds to We’re Sorry We’v Done All We Can Do.
    I will give Emgality a Try, First Injection Tomorrow.
    And I Still Have A Headache
    Thank You So Much
    God Bless

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    • By beachbumgirl

      Dld516- I’m so sorry what you have been through! I do hope the Emgality helps. Did the docs say you have no more CSF leaking? Sure, they make it worse but don’t help with the pain. I here ya.

      Andy69W- I’m sorry you were denied again! Since they have denied twice, what do they recommend? Intrathecal pain pump? I’m praying you find a solution soon.

      I’m 15 days post op scs today. Sutures out. 9 programs to work with. My leads go from just about my eyebrow to mid
      Head. They also travel down my cheek and over my left ear.
      Crazy 😜. It takes 30% migraine pain away. Dld516- I also have a Boston Scientific. Time will tell. Some days bearable
      Others, staying in bed.

      Take care y’all.

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