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Surgery for Migraine: Is it Worth the Risk?

Stories on a plastic surgery technique used to treat migraine made the rounds this month. Most articles present the surgery as a miracle cure, though Philly.com’s article Surgery for Migraines: Help or Hokum? provides a well-balanced look at the procedure. It notes that neurologists “generally remain not just skeptical of surgery, but disapproving.” In fact, the American Headache Society issued a statement urging patients be cautious in considering surgical treatments. The statement reads, in part,:

In light of recent news reports about the growing use of surgical intervention in migraine, the American Headache Society® is urging patients, healthcare professionals and migraine treatment specialists themselves, to exercise caution in recommending or seeking such therapy.

In our view, surgery for migraine is a last-resort option and is probably not appropriate for most sufferers. To date, there are no convincing or definitive data that show its long-term value. Besides replacing the use of more appropriate treatments, surgical intervention also may produce side effects that are not reversible and carry the risks associated with any surgery. It also can be extremely expensive and may not be covered by insurance. Most importantly, it may not work for you at all.

Since the occipital nerve stimulator I had implanted in 2003 proved ineffective, I swore I wouldn’t try to find a surgical solution again. (The nerve stimulator was my third migraine-related surgery, including TMJ surgery in 1997, sinus surgery in 2000.) The nerves of a migraineur are so sensitive that anything that mucks with them seems a bad idea.

That resolve lasted until earlier this spring when I found myself wishing for a hole in my heart (which I do not have). In a comment on that post, Drew shared his story of being diagnosed with a PFO and considering having it closed as a treatment for his NDPH (new daily persistent headache). Drew wrote,

“The research on this subject has led me and my doctors to one simple reasoning of thought. The proceedure is just not worth it. There is no garantee that closing the pfo will stop the headaches in the short term or long term over your life time. There is also the very possible chance that you could suffer even more complacations from the surgey, by no means is this surgey a fix it. Remenmber it still intails your heart and messing with the bodies system.”

The wisdom of Drew’s comment resonated when, days later, I saw the stories about plastic surgery for migraine. I must admit that initially my hopes were raised as I read about the surgery — I felt pretty bad and was wooed by the thought of relief. Then I remembered Drew’s comment and my own resolve and saw the AHS’s statement. No surgery for migraine has good evidence for efficacy and any surgery has potential complications and impacts the body in many ways.

I have re-resolved to avoid any surgical “fix” until it has strong support from scientific studies. The potential problems just aren’t worth the risks. What do you think of surgery for migraine? Have you had any (and was it effective)?

110 Responses to Surgery for Migraine: Is it Worth the Risk?

  1. Kate says:

    I think if I had a pfo I would go through with surgery. Same with an occipital nerve stimulator (actually working towards doing a trial currently, but only with leads to the front/suboribtal region added). I wouldn’t however do anything that involves severing or messing with nerves, like the decompression or plastic surgery type procedures. The risks of surgery alone are high enough. I think there is some limited data on some of these surgeries, but definitely not the stuff that is really needed.

    There have been some very small studies and anecdotal evidence on the occipital + suborbital nerve stimulator for constant headache like NDPH such that I think its worth the risks for me. The Reed and Omega procedures are getting some news, but other doctors will add the leads to the front too. I also like that you can do a trial procedure, but I know a lot of folks have a tough time knowing whether it is working for reasons such as procedure pain. I think a lot of folks go through with it hoping they will get better results than the trial. Best wishes.

  2. Shelby says:

    No surgery yet. I am trying Botox but unfortunately it only seems to duklnthe pain which delays my abortive medication so I haven’t found it effective. Have my next round a week from today, and then I think I will close the book on it. I was recently diagnosed with fibromyalgia which has made life with chronic migraine a world of fatigue and pain. You talked about having migraines and over sensative netves… I can relate. I stay sore for weeks after I get blood drawn, injections or a bump or bruise. I know this is not scientic terminology, but I find myself saying my nerves are over dramatic. They get all irritated for no reason.

    I am skeptical of many treatments because in the mix of severe pain I become desperate for relief. It’s easy to overlook the risks when you have 15 migraines a month or more but its wise to research what’s available.

    I keep thinking that out of all treatments out there it will only take the one right drug or change in diet and your better… But I know migraine is far more complex than that. More complex than many understand.

  3. Lisa says:

    It is probably worth waiting until there is more evidence that it will help and not harm. I agree that our nerves can be extra sensitive. However I would keep following it — and it’s good to know there might be more options in the future. Since migraine is so complicated there is probably not one easy fix is what I am realizing. Let’s all treasure each moment we are feeling semi decent and smile even if we don’t feel like it.

  4. Thanks for the great comments!

    Kerrie

  5. Adee says:

    I have almost daily severe migraine and have also developed fibromyalgia which presents as severe fatigue, cognitive issues and toothache like pains in my bones, down to my smallest toe bone.
    I’ve had a hole in my heart (PFO) closed – its was a good 1/2 inch tunnel in my atrial septum. It hasn’t stopped the migraines but has slightly lessened the severity and frequency (not enough to validate the surgery though. I’m glad i had it done though as it definately cuts my stroke risk.
    I’m perhaps having a hysterectomy to see if that has any effect on migraine. I’m really wavering about this because of long term effects on bone density etc but its so miserable having daily chronic migraine for me and my family I feel I have to try every avenue.
    I’ve tried almost every drug available, mouth guards, alternative medicine etc. Daily chronic migraine is crap.

  6. Marlene says:

    I had a PFO closure in 2006. For the first 6 months it seemed like it was really helping–I felt that my migraines were reduced by half. But after that they came back full force. However, like Adee I’m glad that there’s a reduced stroke risk. Plus, I feel pretty hardcore knowing there’s titanium in my heart. :)

    Chronic pain of any kind is crap — here’s to better days for all of us!

  7. Barbara Hamm says:

    My daughter has chronic intractable migraines since she was 11 and is 34 now. For the last 16 – 17 yrs the severe pain is constant with no stopping. The pain ranges from a 7 to a 10 on a 10 point scale. The severity is most usually an 8 or 9. She has taken every medicine and combination of medicines available including having a pain pump with the medication Prialt (from a poisonous sea snail) with no improvement. She also had a hysterectomy but that did not help at all either. We were considering the Omega Procedure but medicare does not cover it and the cost is enormous ($55,800) and it is not FDA approved at this time. So we wait….

  8. arlene says:

    THE PROBLEM WITH DIET FOR MIGRAINE,CAN BE TRICKY.

    YOU MAY FIND YOURSELF HOPPING FROM ONE FOOT TO ANOTHER.
    TRYING TO FIGURE OUT WHAT YOU AT THIS TIME THAT TRIGGERED A MIGRAINE.

    AND…WHAT TRIGGERS A MIGRAINE ONE TIME, MAY NOT TRIGGER IT ANOTHER.

    THEN, JUST WHEN YOU THINK YOU HAVE YOUR DIET AND TRIGGERS UNDER CONTROL…THERE YOU GO, ANOTHER MIGRAINE, AND YOU ARE LEFT, ONCE AGAIN, TRYING TO FIGURE OUT WHAT YOU ATE.
    AFRAID TO EAT ANYTHING AT TIMES.

  9. Melinda says:

    I have been suffering from migraine and daily headaches since I was 10 years old. I am now 37 and I have tried every medication and numerous other treatment options. I am beyond sick of drs treating me like a druggie. I cannot take pain medication because 99.9% of the time any pain medication will give me a migraine. If I do take a pain medication then it shows that I am in serious pain. I broke my ankle and only room 2 of the pain pills prescribed to me. I also fractured my sternum, serverly bruised my ribs and heart and have to say that was the most pain from an injury that I have ever been in. Taking a small breath was excruating and was that way for nearly a month and year again I went without the pain medication because I will do ever what I have to do to avoid getting a migraine at all cost. I know what foods and scents trigger a migraine for me and stay away from those things. It is severely irritating to tell a doctor that all u want is to find something anything to get just the slightest amount of relief and that if u owned a gun that you would probably blow your brains out because the pain is so bad and for them to continue to tell u it’s this that causes them or its that when u have said over and over that its not possible or to be treated as if u are a drug seeker. It would be amazing to find a doctor that had actually had a migraine before. Unless a person has had a migraine before then that have no clue what it is like and how they ruin ur life. I had a hysterectomy when I was 26 and it did nothing what so ever for my migraines or headaches. The hysterectomy was not for the reason of treating my migraines. I can honestly say that I would try anything and do any and every surgery that there is, any new medicine if there was a fraction of a chance that it would only cut out 1 of my migraines. I would not care what the side effects were, what the long term outcome would be or even if it would kill me because the migraines are killing your spirit and ability to have any sort of enjoyment out of life. It may be wrong to think of things that way but I do not know of any other way to feel because my migraines control every single thing I do. I have missed out on so many special things with family and friends because all I can do is go to the darkest and quietest place I can find and endure the hell that is a migraine. 95% of the time my migraines come on without any warning and often last for days upon days. Right now I am on day 10 of a migraine that will ease up to a severe headache only to come back twice as bad. I have to continue to work and do everything else that needs to be done regardless of the pain. I know that I cannot be the only one out there that deals with this sort of thing. I can only hope that one day I will be able to find that miracle for relief even if it is just the smallest amount. As I hope that anyone who suffers from migraines will be able to get some sort of help.

    ********
    I’m sorry to hear you’ve struggled so much and are in a bad migraine attack right now. I hope you are getting good medical care and are able to see a headache specialist. Hang in there. There are so many treatments available, you will find an effective one eventually – even if it feels like it takes forever to get there. After 10 years of being dismissed by doctors, then 10 years of trying more than three dozen preventives and a slew of other treatments that had no effect, I’ve finally find a combination of supplements, medications, and diet that has reduced the severity of my attacks significantly. I truly believe there’s an effective treatment for everyone… it is just a matter of finding the right one.

    Take care,
    Kerrie

  10. Dave says:

    Does anyone know of information on the “Omega Procedure” and the Migraine Centers of America? I’m looking for first person experiences pro and con much like the ones you see when you reserve a hotel room online.

    • That would be really helpful, but I’ve never seen as such. People talk about nerve stimulators on forums and Facebook, but don’t always say where their surgery was. Some people love their nerve stimulators, others regret having done the surgery — those are the two most vocal groups you’ll find online. Migraine Centers of America is focused on surgery and really only treats patients who are surgical candidates. Best of luck in finding information. Please let us know if you come across a good source for reviews.

  11. Justin says:

    Please check out the external, portable nerve stimulator just approved for use in the USA by the FDA. http://Www.cefaly.us
    Requires a prescription from your dr. I’m going to try it. I have almost daily chronic migraine and have tried almost everything except nerve stimulation. I’d prefer something like cefaly that is non-invasive over surgery.

  12. Freida says:

    Has anyone had, or know personally of someone who’s had, the surgery where they either take out or clip muscle and/or nerves for migraines? I’d appreciate pros and cons on that also. I have chronic, daily migraines that are controlling my life, and I’m seriously considering it. I’ve seen a doc at UT Southwestern in Dallas, TX who does this type of surgery. Thanks for all comments.

  13. Teena says:

    Our daughter had nerve decompression surgery in 2011. Her story is at http://www.mydaughtersheadache.com
    She got her life back and will be startng Pharmacy school at Purdue in the fall.

  14. Mary Ellen says:

    I don’t know if I”m too late to get in on the conversation but here goes. I had the Omega procedure Dec. 30, 2013. I suffered from chronic basilar type migraines for 42 years. I took every kind of medicine you can imagine, including injections directly into the occipital nerves but nothing ever really helped. I did take some anti-epileptic drugs which kept the headaches away but the side effects were so severe I stopped taking all of the medicines. I now take Celexa every day which helps with my milder headaches.
    I had the procedure and can tell you that it worked for me. If I can catch my headache at the start (some being during sleep) I turn on my device and get 100% relief usually within 10 minutes. I leave the device on for the next several days until the migraine is gone. During extremely severe migraines, I only get about 50% relief. However, I only take about half of the drugs that I would have normally taken to help take the edge off the pain. I am now able to participate in life again, even when my headaches are severe due to the pain relief. I simply charge my battery about once a week (it’s in my lower back) and that’s it. Turning it on and off is as easy as using a remote control and some ppl leave it on all the time.
    Cons: lead migration is probably one of the biggest. I do have one lead that has slipped out of place but since I don’t really need that one, it’s no big deal to me. To fix it requires another surgery to replace it in the correct part of my head. There is no lifting or stretching for several months. You will never be able to have an MRI unless you get an MRI friendly stimulator. Recovery time was easy for me but I know some ppl have a rough time with the pain for about a week or so. The biggest hurdle you face is that your insurance company may refuse to pay. It took about a year for me to get mine approved and then,after my surgery, they decided not to pay for most of it. However, I was only charged my copay amount by the doc and hospital and they simply forgave the rest of the bill. You need to carry your little remote with you and take your charger with you if you go on a trip. I carry my remote to work (and back home) and just keep it stowed in my desk in case I need it. Other than that, I have LOVED having it and would do it again in a heartbeat. It does not work for everyone, though, so I did have to do a four day trial procedure before having a permanent implant. If you have further questions, I’d love to answer them as much as I am able.

    • Diane says:

      Question for those who have the omega procedure. Was yours done through Migraine Treatments of America? And is yes, will you tell me what state? I am in Michigan and would love to hear from anyone that had theirs in my state. How ever anyone who has it ild like to hear from. I went for my first appointment and told I am a candidate for this procedure. We’ll see how long it takes t.o get it authorized through insurance. They seem to think my insurance will cover it, but we’ll see. Also, I go for my psychological testing that they told me was required for insurance. Did anyone else have to do that? Questions: One is something that you mentioned and that is what keeps the leads/tubing from moving around inside your body? How did you know that a lead had slipped out? The battery pack under skin, does it protrude? Does it show a bump where it is at? Do you have to wear a certain waistline jeans? Like a higher waist or lower waiste? I am pretty thin. And no I’m not concerned if it shows/protrudes I will do anything that might help to lesson number or severity of my migraines. I’m just curious of its placement. The dr showed me but I wanted to ask someone who actually has it. What is the difference between the omega and reed procedures? I too have suffered migraines and have done numberous things that others here have as well. A couple of things I have had done I don’t see here, I will mention incase someone else might want to try. I know I’m always trying to find something I yet not to have tried. One is craniotomy decompression surgery with dura-plasty and the other is radio-frequency lesioning (where basically the microwave nerves to elininate connection). Unfortunately neither worked to help my migraines. But, I want to make note of those things because something that doesn’t work for one might work for another. The one thing that DOES ease the severity of my pain (when it’s close to an unbearable pain) is Sumavel Doespro injection. Within 15 min. I get relief. Problem is due to its cost insurance only allows me to have 4 a month because they are exspensive. Also I could use them every day.

      • My wife had hers done at the Migraine Treatment Centers of America in Dallas, TX.

        Read everything at http://www.gofundme.com/migrainessuck – no request for funds – it’s just filled with information: text, pictures and video.

        I’ll happily answer anything you can’t learn there. We believe this is a complete reset of our lives.

      • Kim says:

        Hi Diane, I had the Reed Procedure which I believe is the same as the Omega procedure so I can answer your questions. My insurance didn’t cover it so I hope yours does. I did not have to do psychological testing. I had mine surgery July 2013 and my equipment is St. Jude Medical. I know some people have other companies equipment. The leads are tunneled into your body and they do stay in place – not sure technically why but mine haven’t moved. Both procedures put leads over the occipital nerves (behind head) and the supraorbital nerves (over eyebrows). The equipment is then tunneled down your back with connectors above your waste (with one incision) and the battery is the top of your butt (another incision). I can see scar lines and feel the equipment but it’s not really protruding out. I know someone who only has the occipital nerve stimulator and her battery is above her breast like a pacemaker. Kinda hard for mammograms. I like the placement of mine. I can charge by tucking the pad into my pants and putting the charger in a front pocket of a jacket/hoodie/jeans and walk around while charging. I have the smaller size battery that the charge doesn’t last as long but I can charge anywhere anytime. I can even charge while I’m driving. I keep mine on 24 hours a day and just adjust as needed. I don’t have to wear any different jeans than I had before. It took me a while to get comfortable with the ones in my forehead but it’s fine now. Have you done the trial yet? The trial is more annoying because the wires are hanging all over but it’s worth it. My migraine was gone on the first day of the trial. Best wishes!!

  15. Michael says:

    I have had my stimulator for 3 years and it has reduced drastically the number and intensity of my migraines!! I have my life back!!!! Check out the Reed Procedure done at the Reed Migraine Center.

  16. Shellie says:

    I have had migraine’s for years to the point I haven’t been able to go to school and not able to got to work. Also times not able to spend time with my family, my kids got used to me having my migraines and they would leave me alone and would take care of themselves. A single parent with three kids and migraine does not mix.. Then got married been married for 7yrs. Love of my life and I’ve been diagnosed with multiple sclerosis and 2013 along with the migraines. I wonder if the Reed procedure would work for me even with me having multiple sclerosis..

    • Shellie, I’m really not sure. You can call the clinic and see if they’ll let you know over the phone. It could be that MS immediately disqualifies a patient, or it could be that they need a complete medical history to know if it might work for you.

      Take care,
      Kerrie

  17. Kim says:

    Hi,
    I had a neuro-stimulator implant in July 2013 and I am SO glad I did it. Everyone is different. I am one of the success cases. Mine was done at the Reed Migraine Center in Dallas Texas and I had to fly there and pay for it out of pocket. I’m glad I did. It gave me my life back.
    I hope other sufferers find something that helps.
    Kim

  18. Laura Hickey says:

    I also suffer from migraines and have been for atleast 20 years. I am 39 years old and a single mom to 3 teens. These migraines control and run my life. I lay in bed all day and night. It breaks my heart because my youngest daughter is 13 and she always wants me to play with her or wants me to gooutside and play and i just cant because it hurts so bad to even lift my head up. I also have fibromyalgia and back and neck problems from several car accidents. I also have degenertive disc disease. Im always in constant pain. I go thru pain management so i do take pain pills but they dont help with the migraines. I am currently on. Topimax, imitrex and maxault for my migrains. They helped in the beginning but not much anymore. I am currently on day 6 on a really bad migraine and had to go to the emergency room last night because it was hurting so bad and i wanted to put my head thru a brick wall or worse. I called my neuroligist today and got an appt for monday so any suggestion i can get to ask him wpuld be awesome because i feel like i am dying a slow death here and i need serious help before i go insane or do something stupid because i cant take this pain much longer. I need to get out of this bedroom and get my life back and spend time with my kids before they r out on their own and dont need their mom anymore. Plz help me anyway u can. Ty

  19. My wife has just gone through the Omega Procedure. We had to raise the money through friends, so I set up a crowdfunding page. We raised our funds and I was METICULOUS about writing up the experience and documenting it with video and pictures. You can read about EVERY step of the way here: http://www.gofundme.com/migrainessuck

    If that URL didn’t go through, replace the ###s with periods and the %%% with a forward slash /: www ### gofundme ### com %%% migrainessuck

    Or Google “gofundme migrainessuck”

    It has changed our lives for the better. Big time.

  20. Mary Ellen says:

    Laura,

    I have been suffering for 43 years so I totally understand what you are dealing with. I tried all the drugs you are on now and many more. I did not get relief. I tried the nerve blocks which helped in the beginning but eventually stopped working for me. I had my neurostimulator done in Dallas, TX by Dr. Scott Farley. It has been a year and I feel like I have my life back. I strongly suggest that you contact someone in your area or pain management group to discuss the Omega Procedure. This is what I had but mine was modified to fit my needs. The recovery was easy for me and I was back at work on day 8. I could not lift more than 10 pounds for 6 months but it was so worth it. The difficulty will lie with getting it approved by your insurance. Mine was denied three times but finally got approved. I had Blue Cross Blue Shield. I went through the Migraine Centers of America and they did all the leg work and found the doctors and different hospitals for me to use. I just went online and submitted a form and they contacted me and got the ball rolling. It took a year to get it approved but well worth the time. Please note that this procedure does not work for everyone. There is a trial surgery before the actual permanent procedure to see if it will help you. The trial was really easy only requiring one stitch. Please research it and see if this may be an option for you. Words cannot express how this procedure changed my life. Good luck and if you want any information, please don’t hesitate to contact me again. I will happily be here to support you as well. Take care and may God grant you respite from your pain and suffering.

    Mary Ellen

  21. Kim says:

    Mary Ellen,
    I’m so happy for you. I had my surgery done at the Reed Migraine Center in Dallas. I believe the Reed procedure and the Omega producer we’re developed by the same doctor, Dr. Reed. I read that somewhere but not 100% sure.
    Anyways, I am so happy I have mine. I got my life back too!

  22. Mary Ellen says:

    The procedures are the same just different names. I have only two leads in the occipital area (back of my head). The leads are run under a layer of fat through the back and are then attached to the nerves in the front or back, as Kim described. The leads stay in place due to the formation of scar tissue which secures them in place. It is critical that you follow doctor’s orders on this…no lifting and do your stretching exercises. It forms a tunnel within the scar tissue so the wires can move with your body…they make two loops in the wires for this purpose. Some leads migrate more than others. You can tell because you will feel the sensation (which feels like pins and needles when your feet fall asleep) in a different place. However, what I found was that mine did not actually migrate…I was having some issues with scar tissue blocking the stimulation. That resolved itself over time. About 25% of leads migrate which then have to be re-situated through surgery. That is why I really did not do anything that would pull on my back or neck for about 6 months. There are also many different stimulation patterns and different levels you can use to adjust your stimulator to whatever works best for you. My recovery time was short but I had some pain for a while until everything really healed and scarred over. After surgery, there was a lot of swelling. My battery pack is right above the right kidney in the small of my back. It was huge for about a week. Now, you cannot see it under my clothes and it is only a slight bulge when I’m unclothed. My boyfriend didn’t even feel it! I can see the outline of the wires and feel the when I rub my hands over them but it isn’t noticeable to anyone but me. I wear shirts with low cut backs and swimsuit. My scar shows but it really isn’t that much of an issue to me.
    I had to have the psychological exam. A psychologist called and talked to me over the phone for about an hour. It was a very nonthreatening conversation and they just want to make sure you are prepared for what is to come. I sailed through it even though I told him that I did suffer from depression due to the almost constant pain for such a long time.
    My insurance denied me coverage. However, they have since paid the claim. If you can show that you have tried everything and it is medically necessary, they will approve it. It took me about one year to get through the whole process. I went through Migraines Centers of America in Texas. There is a facebook website called Occipital and Peripheral Nerve
    Stimulation that has lots of info and people that have undergone the surgery too. It’s a great source of information and you could probably find ppl that are from your area. They also have info on how to get your insurance to approve the surgery. I turn mine on only when I need it. I charge it about once a week. It straps around my waist and I clean house, watch TV, and even drive as I charge. The key is to not let it get too low because then it takes forever. I have a St Jude as well. I run it for as long as needed…even sleep with it on. I get about 50% to 100% relief depending on my headache. If I catch them as soon as I feel the symptoms coming on, it only takes about 10 minutes to get rid of all the pain. If I wake up in the middle of the night with one if full swing, I can usually cut it by 50% and sometimes more. I have cut my medications down a lot but still take a daily pill as prophylactic and have breakthrough meds when needed. I have a card to carry with me as the stimulator can cause metal detectors to activate, although I’ve never had an issue. You can also never have another MRI unless you get one that is MRI friendly. I didnt think this would be an issue until I had a stroke last July and needed an MRI. They just did a CT scan but MRI would have been better…and no radiation. Anyway, I strongly suggest that you pursue the trial and see if it will work for you. It’s really been a lifesaver for me. Good luck and check out that facebook page. It helped me a lot!

  23. Kim says:

    Mary Ellen, That’s great that it’s helping.
    Since mine are daily I have to have it on 24 hours a day. It’s only the forehead part that took me a while to get used to it. The occipital ones were easy for me to adjust to. There isn’t fat or much skin on the forehead that’s why it was harder for me to get comfortable whit it. I’m happy though because w/o the supraorbital leads I wouldn’t be doing as well.

  24. Mary Ellen says:

    So glad to hear it Kim. I only have pain in the back and it is raging tonight. The stim has helped by about 50% but I’m still down and out for now. I am so thankful to have been given this opportunity to have something that helps. I will take 50% over 0% any day. Glad you are doing so well. Take care!

    Mary Ellen

  25. Diane sills says:

    Hi Mary, it looks like I was to send my return here. I just did a return e-mail so if I’m doubling, that’s why.

    Thank you for responding. Yes, I too would gladly take 50% relief. Where did you have yours performed? I’m doing it in Michigan. I had the Psycological yesterday. So, they will be submitting the request for coverage from my insurance this week. Did your insurance play for it all? I’m praying mine will. How did you respond for the trial? Did you feel a headache with it on. Please feel better soon and I’m so sorry you have a full blown migraine now. I do understand. Only those who have them really know the pain. Thank you again. Diane

  26. Diane sills says:

    Mary Ellen, I just received your response after I se tone with questions. Thank you for being so detailed and you explained everything I wanted to know! Thank you so much. It helps getting feedback from someone who has been through it. I pray it doesn’t take a year for my approval. I’ll keep you updated. Thanks again and I’ll be praying for you. Diane

  27. Peter in Scotland says:

    Hi there im from Scotland. I’ve had constant chronic migraine for 11 years this april. I also have tinnitus for 10 years. Pain pressure and throbbing never goes below 7/10. Tried medication, painkillers ( what a joke), cbt, exercise diet changes botox iv caffeine etc. Getting to try a single pulse tms device soon but don’t expect any relief. Nothing bloody works. Scottish NHS turned down my request to be referred to neurosurgeon about ONS.

    • Peter,

      The TMS devices have some great treatment results and they don’t have the same movement restrictions an implanted stimulator would have. You might also want to look into Cefaly and a vagal nerve stimulator. Again, both types of external stimulators. Best of luck finding relief.

      Take care,,
      Kerrie

  28. Jai says:

    do the stimulators help with other migraine symptoms besides pain? Not to downplay pain but I can be really impacted by nausea, light and sound sensitivity and cognitive impairment during my many migraine attacks as well.

    • Jai, if they prevent migraine attacks, then they can keep the other symptoms from coming on, too. I totally get what you’re saying. I find fatigue, cognitive dysfunction, and sometimes nausea, to be worse than the pain for me these days.

      Take care,
      Kerrie

  29. Diane sills says:

    After having the Omega Procedure, has anyone continued having Botox?

  30. Mary Ellen says:

    Jai,

    Because I can usually catch most of mine early, I do not have the nausea and light sensitivity. When I had a migraine in the past, I experienced nausea, light sensitivity, partial blindness, inability to speak, word find, recognize common items or people, have had paralysis on a few occasions, vertigo, inability to walk in a straight line, high blood pressure, numbness, tingling, and even collapse. It actually looks like I am having a full blown stroke but the aura subsides within an hour. Then, the pain washes over me and I’m done for as the pain doesn’t let up much for the next seven days. My longest migraine was 43 days straight. It was awful. Since I’ve had my implant, I’ve not had those symptoms even though I’ve had several really bad headaches. I usually cannot catch the bad ones when they are starting because they often begin during sleep for me. I only wake up after they have gotten really bad. So, for me, the stimulator has helped with all of my aura symptoms. I’ve had it a little over a year and I’ve only had slurred speech once as opposed to a couple of times a month. When I feel the aura beginning, I turn on my stim and the headache and all symptoms are usually gone 100% within 10 minutes. I leave it on 24/7 for the next three or four days until I know it has passed. My nighttime headaches usually get me about 50% relief with the stim on. Those days are rough but so much better than before. I wish all of you luck and relief. I know how indescribable it is and how difficult life can be with these damn things. Peter, I am so sorry to hear of your suffering as well. May God bless you all!

    Mary Ellen

  31. Mary Ellen says:

    I have not.

  32. Diane sills says:

    I want to thank Mary Ellen for providing detailed information on the Omega. I always seem to have questions after I leave the doctors office, plus I like to hear from those who actually have had it. I wondered if ild have to buy different jeans/slacks. You said not, but wondered cause I am thin. I don’t have a lot of fat. I wear size 2 to 4. I’ll update on what happens with our insurance (Cofinity).

  33. Kim says:

    Diane, I had the Reed Procedure (same as omega) I don’t see a migraine doctor anymore. I don’t need too. Mine is on 24 hours a day.

    Jai, I still have migraines every day and the stimulator helps manage them. So I do still have some of the other symptoms. I just don’t have the pain every day now.

  34. Kim says:

    I believe I have great success with my stimulator because I have 4 leads. Occipital and Supraorbital nerves.

  35. Mary Ellen says:

    My battery doesn’t stick out very far at all…just enough to notice. It kind of depends on where the doctor puts the battery. Mine is above my waist in my back…about where my right kidney is. So it’s not even an issue with the waistband.

  36. Diane sills says:

    Good News. In less then a month Insurance has authorized for the trial procedure. They have even authorized it as being in network (otherwise it would of been 80/20, which we wouldn’t been able to afford).
    We feel very Blessed for this opportunity. I will be having it done on Friday.
    I get nervous about the unknown, so I would appreciate anyone sharing with me about their trial. I’m told I’ll not be intubated, as I will for the permanent one. I’m told it will take an hour. They will put 4 wires in, two at either side of my temples and 2 at the base of my head/top of my neck and will have exterior wires that attach to a battery pack. Can anyone add to that? Is it painful, uncomfortable or how would you explain it? Thank you.

  37. Kim says:

    Hi Diane,
    Good luck on Friday! It’s not painful. If you can live with migraines than you’ll be fine. The trial is just annoying with the wires on the outside of you and fanny pack with the battery. But, it’s totally worth it. My migraine was gone after 1 day! So it’s pretty dramatic. It either works or it doesn’t. It’s uncomfortable sleeping but having a trial done is key. I had my doctor take mine out early because I knew it worked and I just wanted to schedule the permanent implant.
    I hope this works for you!!

  38. Emily says:

    Re: Cefaly device
    Because I saw a comment on it earlier, I can add that after paying out of pocket for the Cefaly device and using it every day for three months, as is recommended, I got no results. Too bad for me. What works for some doesn’t work for others and vice versa.

  39. Mary Ellen says:

    Kim is right…virtually no pain whatsoever. Just carried my fanny pack around and tried out the different settings to work on my headache. My migraine was also 100% gone in one day. It was amazing. There was no general anesthesia and the whole thing was completed in about 40 minutes to an hour. I was out shopping at Target that evening looking like a loon! Sleeping was a little rough but I found partially sitting up in a recliner really helped me. To remove mine, they just cut the stitches and pulled it out. I didn’t even feel it. It was awesome. The only bad part was waiting for the real deal! Good luck and I wish you all the best!

  40. Kim says:

    @Emily The great thing about the Reed or Omega procedure is even if nothing else has worked, this is so different that it could help. I tried Cefaly too and it didn’t work for me.

  41. Diane says:

    Thanks Kim & Mary Ellen for the info on it. It helps going in knowing what to expect. You said no anesthesia for the trial? I was told I would be put lightly under, then woken so I could tell him what I was feeling. You said it took 40 min to put trial in, what is he doing for 40 min? My doctor said it would take an hour and the permanent one two hours. I’m praying it helps. I do have a remote bed just for my migraines because i don’t have to physically adjust my position and it helps with the nausea to have my head elevated. I would recommend it to everyone who has migraines. Well one more day to go. Just coming off of a migraine. If I have a really bad one that day, they said I can still give myself an injection and take zofran etc. before I get to the hospital.

  42. Kim says:

    Diane,
    I had anesthesia. I don’t remember how long it took but I wasn’t completely out and I remember them asking me to rollover. I hope it works!!

  43. Diane says:

    Thanks Kim. I have had radio frequenting lesioning before for my migraines and I guess they had me talking some but I don’t remember. I don’t like being awake while they work on me. I hope I get verset so I don’t remember anything.

  44. Diane says:

    I guess I shouldn’t be so apprehensive about this. I had brain surgery, so as far as pain goes, nothing can top that. I had a joint replacement more recently. I just don’t like putting on the hospital gown. It makes me feel like something’s wrong.

  45. Diane says:

    Insurances are strange, when one persons approval goes right through and another person never does get it approved. I would think how it is worded would make a difference, the medical talk on it. A migraine is a migraine, chronic is chronic. What’s there that they don’t understand? What I think they did with me is just overloaded them with documentation of like 100+ pages and I had 13 doctors and a page long list of medications. It would of shocked me if they hadn’t authorized it.

  46. Diane says:

    FIY: I use oxegyn at home for intense migraines. Insurance covers it. The tank is delivered to my home and I just call when the tank is near empty and they come and switch out tanks for me.

  47. Kim says:

    Diane, I didn’t feel a thing and barely remember it. I wish my insurance had paid but the kept saying it was experimental since it’s not FDA approved yet.

  48. Mary Ellen says:

    Yea…my insurance didn’t approve mine either. Then they did, then they didn’t, then they finally did. So who knows.

    I didn’t feel anything and don’t remember anything either. They gave me something by IV and Versed. It was awesome! I slept for a few hours and then I was at Target shopping for a few items I had forgotten! I just kind of took it easy for the next few days and did exactly what the doctor told me to do and it was amazing! I wish you all the best! Good luck and my God guide the hands of your surgeons!

  49. Diane says:

    Kim in so sorry your insurance wouldn’t authorize it. It must be very expensive. Thanks for the feed back. My big day is tomorrow. Hope I feel nothing too.

  50. Diane says:

    Mary Ellen. I sure hope my insurance doesn’t change its mind. That’s scarey. I have had versed before. That is a memory forgetting drug. I’ll ask for it, lol. I just can’t see me going shopping afterwards. That’s too funny. Thanks for the encouragement!

  51. Diane says:

    I had the trial put in on Friday. I dont want to discourage others, but my experience has been very hard on me with surgical pain & sent me thru the roof when i switch programs because it reved up and goes from one to ten in a couple of seconds and it takes more then that to dial it back down to a bearable place. Now that some of the swelling has gone down I can handle it. I know everyone has their own personal personal experience so I am sharing mine. Upside is I have no migraine. When I start to get one I can hit the program that will focus it on that area and it goes away in less then a minute. I go tomorrow to have them reprogram it. They are looking at removing it on Wednesday.

  52. Diane says:

    I wanted to mention that I don’t remember having it done. I had expressed my concern about that and everyone assured me I wouldn’t and they were right.

  53. Kim says:

    Diane,
    NO MIGRAINE!! That is excellent!!! I’m so happy for you. Surgical pain is normal so don’t worry about that. Adjusting programs is key. Meet with the rep as often as needed until it’s right. It doesn’t take long to adjust or add programs.

  54. Diane says:

    Thank you Kim, now that the incisional pain is subsiding it’s easier to monitor my migraines and their origin areas. This is pretty amazing. She only had set 4 but she said she can do as many as 10 settings. I think the problem of the initial settings was due to that they were set prior to anethisia not worn off yet and no pain or swelling had taken place yet. So when that happened it was set higher then I could handle. It’s only been a couple of days and I’m feeling better. Each setting only covers a portion of my head. As soon as I feel a headache I turn that program on and in minutes it’s gone away. My head inside feels so clear and light with airiness. The general weighted down, pressure, heavy feeling I always Felt is gone. My head feels really good. I will get it adjusted Monday. I have kept a journal that should help. As for the incisional part, my forehead is green, whole head is tender and hard to get my head in the right position with all the wiring. You are right that the programming will take time.

  55. Diane says:

    They will take the trial all out and resubmit to insurance for the permanent one. Can anyone tell me how many weeks before that authorization comes through. Also, they told me that there will be a three inch halo ring shaved on my head. Can anyone tell me about that?

  56. Mary Ellen says:

    That is so awesome! I hope you get your perm and it works as well as mine does! Great news!

  57. Diane says:

    I am just really having a hard time with the incisional pain and just generally don’t feel good. I met with the rep and she set up more programs and said everything is ok. I have been through brain surgery and am pretty tough. But, this is hard on me. Any thoughts on it?

  58. Diane says:

    I see doctor tomorrow and said I can do it Friday. But I’m going to wait a week. I just feel I need to recover some from this.

  59. Diane says:

    Can anyone tell me what the pain is compared to the trial? How long did it take to feel like yourself again (pain wise)? I don’t want to sound non-appreciative. I’m thrilled it is working. This is just taking a toll on me.

  60. Kim says:

    So sorry Diane you are having a hard time. If it gets rid of the migraine pain it will all be worth it. It took me about six months to get used to the permanent stimulator. But now I’m past a year and a half and everything is great. I’ve had some equipment problems but it’s all worth it to me.

  61. Diane says:

    Oh thank you Kim for the incouragement. I really needed it. My family too has been worried about how I’m feeling. I agree being headache free for 4 days now is amazing. I guess I thought I would feel better then this, being migraine free. I think I’m experiencing some depression and I don’t know why. And thank u for telling me about 6 months so I know what to expect. The unknown is taxing. I hope you’ll let me continue to be in contact with you. I am on facebook and we could do side messaging or email. This forum might not be the way to communicate (I don’t want to discourage others) but it’s up to you. Just let me know. Thank you again.

  62. Mary Ellen says:

    Same here. Pain was pretty bad for a few days for me and I was tender, especially over my battery site, for several months. It’s been over a year and I feel great. I’m sorry you are struggling. I got really depressed after my trial because my migraines came back with a fury when they pulled my trial. Once I was all healed up on the inside, everything just fell into place and I really don’t even notice it. I wish you the best. Hang in there.

  63. Peter says:

    On April 14th I will have had a constant headache (chronic migraine) for 11 years. Just failed 3 botox treatments. My nhs board won’t refer me to neurosurgery so im stuck im agony and having to consider suicide.

    • Peter, I’m sorry you’re in such a difficult place right now. Please hang in there. Have you talked to your doctor about the Cefaly or transcranial magnetic stimulation? Both are types of external neurostimulation and they do not require surgery. Also, Migraine Action is a UK charity that might be able to help you: http://www.migraine.org.uk/. They have a help line that you can call with questions. Maybe the can help you get a neurosurgery referral or give suggestions for other treatments that are available to you.

      Take care,
      Kerrie

  64. Diane says:

    Thank you Mary Ellen for your feedback and honesty. It helps me feel like what I’m experiencing not so off. I want to make sure the implants the battery high enough that it won’t rub on my waistband of my pants. I think I’ll draw a line with a marker that morning, lol How long did u wait between the temp and permanent one? I just would think that I should wait between the two so i could heal up from the temp. But on the other hand if migraines come back on I wouldn’t want to wait too long. Do u find you have equal vibration level on all four of your areas? Im having problems with the balance of them. I do use the 4 individual levels but still just can’t get that equal feel all over my head. Also is it normal that by turning or tilting your head it gets stronger and weaker?

  65. Mary Ellen says:

    Yes mine does increase in I tensity when turning my head too far. They even recommend you not drive with it on for that reason. I had the temp in June and perm in December. But I was sick in between so I had to postpone it twice. Otherwise I could have had it done sooner. My battery is in the small of my back on the right side. It will be pretty big after surgery for a couple of weeks. After the swelling is gone you can hardly see mine. No one sees it when I wear a one piece swimsuit. I do have varying strengths. My right side ways seems weaker than the left. Of course, I think it may be because that is the least painful side so maybe it just feels weaker. I don’t know but they can get you programmed so you can get what you need. The sensations will also change some after all the healing is done. I can use mine at a higher level now that I’m healed. Hope that helps.

  66. Diane says:

    Thank you Mary Ellen. Your info you share with me helps me a lot. I just got home from the removal of the trial equipment. They will call to schedule the permanent procedure. Something interesting I was told. They will implant the most current battery that has been patented. This one will have the capability of an updated app. This new one will have no feel of any vibration. It is already being used in Europe and should be available here withing a year. It runs on a frequency level that makes no vibration. I’ll make note on this site when I have more information on it.

  67. Kim says:

    @Jai, since my migraines are daily I have my stimulator on 24 hours a day. I do still have nausea sometimes. The stimulator gets rid of the pain which is the worst symptom for me. I use nausea meds now and then. My stimulator covers the occipital and supraorbital nerves which is why I have my life back.

  68. Kim says:

    @Peter, I’m so sorry you are suffering so much. I went 18 years until I found something to help me. Don’t give up!!!

  69. Diane sills says:

    Sumavel Doespro was the only medication that has ever helped my migraine pain. If you have never tried it I would strongly encourage you to discuss it with you physician. Laura I’m so sorry for your suffering and Peter, there is always hope. You are in my prayers.

  70. Diane sills says:

    Kerrie, that was an excellent link you posted. I thought I would check it out. To my amazement I have taken the majority of the medications listed. It’s a great reference of medications that are possibilities and can be discussed with your doctors. I know too that the criteria for insurance coverage for the Omega Procedure is that you have documentation of medications in all of the groups listed. I just didn’t know of a sight that listed them all. You have to be proactive in your treatment and never give up. Just keep researching. Your doctor can write you a script for physical therapy. Off and on I would go and they would do moist heat, back/neck/head massages. Another thing I have is an oxygen tank at home. It doesn’t take away the pain but it does make me more comfortable and less panicked at times.

    • Diane, I’m glad it was helpful. There are, of course, many other possible medications, but those are the ones with the most established efficacy. Another similar study of acute migraine medications was done recently. I still need to write that one up. I agree that you have to be proactive and keep trying. I hope you’re on your way to relief.

      Take care,
      Kerrie

  71. Diane says:

    How much of your hair was shaved? My doctor said about 3 inches that frames my face and around the back lower part of my head. What were your personal choices for hair coverage?

  72. Tiffany says:

    Hello all! Thank you all so very much for providing so much information about the Omega/Reed procedure. I am scheduled to begin the trial procedure next Wednesday….and I am very nervous!! Fortunately my insurance has approved everything. Years of paying for my meds, hospital visits, and around the country doctor visits…I suppose they figure anything to heal me of this illness is worth a try?!
    Anyway, my pre-op physical is this morning, so I’ll be able to ask my last few questions, but I thought I’d ask them here too…since some of you all have actually had the procedure done!! My biggest concerns are…exactly how bad is the pain after the BIG surgery (not the trial), and not being able to move much after the big surgery. That was something they did NOT tell me! In fact, when I asked my doctor (I’m in Nashville btw, so I see Dr. Rupert) about post-op, he said the pain/recovery was comparable to my C-section I had with my twins 10 years ago. I assure you it did not take me 6 months to recover from that! As a matter of fact, I asked him specifically if this was comparable to a back surgery I had 2 years ago, and he emphatically said “NO!” But from what it sounds like, it might be. I cannot imagine not lifting, twisting, etc for 6 months again! This worries me as well because I’d like to be able to exercise…I’ve just recently begun doing this again. :(
    And last…exactly how much hair do they shave off?? (Obviously a shallow question, but I am curious. They keep telling me it won’t be noticeable, but I have a hard time believing that!)
    I suppose none of these are deal breakers if I would be able to stop giving myself painful Imitrex shots every single day….sleeping in dark rooms…lying in hospital beds for weeks at a time….ughhh. What a life.
    Thanks for any information you guys can provide….it is so appreciated. This is the first forum I’ve been able to find that actually provides GOOD information!!

    • Tiffany, talk to your doctor about movement restrictions. They may have changed since I had my stimulator in 2003. Be specific about the kinds of movement you want to be able to do and ask if there is a risk of lead movement with any of them. You can also contact the device manufacturer with such questions.

      Take care,
      Kerrie

  73. Karen says:

    My insurance has approved my Omega Procedure but it will be out of network. That being said, my OON benefits are better, and my out of pocket for the Omega Procedure is minimal. I am scheduling my trial. 4 years of constant daily headaches are enough for me. I have to try this.

    They are close by and the cost is minimal. I spent THOUSANDS of dollars with the Mayo Clinic and I am worse than I was when this all started, physically and financially.

    BTW, I have had the Cefaly device for over a year. It didn’t help much, but there are rare occasions that when I have a headache and use it, it tones the pain down for a little while.

    Maybe I should start a little blog about my Omega experience?

    Karen from Arizona.

  74. Kim says:

    Tiffany,
    So happy your insurance approved it. I paid $60,000. I got my life back though!!!!
    The recovery isn’t bad. For me getting used to the stimulator on 24 hours a day was the hardest part. I can’t turn mine off or I’ll have a migraine within 1/2 hour. If you have short hair you’ll notice the shaving. I have medium/long hair so you would only notice when I pulled my hair back. Just be patient with recovery. You’ll be able to exercise but may need modifications. It just depends on what you like to do. I only spoke to one person about this before I did it. So I’m glad we have online forums to share experiences.

  75. Kim says:

    Karen,
    I started a blog just recently about my reed procedure. I just want to help other migraine sufferers.
    Good luck with your surgery.

  76. Karen says:

    Can you post the address to your blog?

  77. Diane sills says:

    I am schedule for the Omega Prcedure on April 2nd. I am anxious, but nervous. My trial was excellent. I worry about the pain. Can someone tell me how long the surgical pain lasts. Will I have to be in bed long? My husband is taking two weeks off of work. The trial as very painful and I was vomiting after, even though I was given phenergan. Is it painful to bend, stretch, lift ect.? Or, is it for strictly stabilization of the implants. I was told scar tissue must form around them. I was told I could lift no more then 5#. I asked if I could pick up my dogs that weigh 7# and was told no. How long are there movement restriction? The doctor said there will be staples but I forgot to ask him where. Can anyone tel me? I probably sound over concerned?

    • Diane, please contact your doctor. Other patients can help with anecdotal experience, but your doctor can best answer your questions about the length of movement restrictions and staple placement. My movement restrictions were not surgery related after two weeks, but the stimulator itself imposed movement restrictions for as long as I had it implanted. Best of luck with your surgery.

      Take care,
      Kerrie

  78. Kim says:

    Diane,
    Everyone is different on how they handle surgery. I agree with Kerrie. Ask a lot of questions. I was on a flight home one week after surgery. I have a really high tolerance for pain. I was just so happy I didn’t have migraine pain. I hate nausea! Use the phenergan and if it doesn’t work there are many other meds for nausea. Phenergan makes you sleepy-so sleep and rest during your recovery. I think I mentioned this before but I use phenergan still. I still have a migraine every day but other symptoms are not gone, nausea is one of mine. The stimulator just masks the migraine pain. Which is AWESOME! But it doesn’t prevent me from having them. Kinda sad but I have accepted it. Good luck and email me if you need to ask more.

  79. Diane says:

    Kerrie, u said, “as long as I HAD it implanted”. Did you have it removed?

    • Diana, yes. I had in from December 2003 to September 2006. It didn’t seem to be effective for me and it restricted my movement too much for me to want to keep it. I chose yoga over the stimulator.

      Take care,
      Kerrie

  80. Diane says:

    Kim, I HATE nausea too! And nothing can be worse then throwing up with a migraine (I do have supositers (promethegan) as a back up for zofran). I Have always had nausea from the migraines, along with throwing up. The doctors goal (for severe migraines) was to knock me out with clonazepam Benadryl, with the support of oxygen & sumavel injection all taken together. The trick is to get my zofran (nausea med) in before I thew up, because once that occurs all bets are off and I can no longer take the other meds. The suppositers aren’t very effective. Knocking me out sounds crazy but all 3 of my doctors (neurologist, physiatrist (not a typo), and family doctor) agreed. Not to mention I take other daily medications for migraines. Hopefully I’ll be able to cut some of them out after the procedure. Thank you for your input. I’ll probably be emailing you Kim.

  81. Diane says:

    I would like to recommend physiatrist. I never had heard of them until I went to one. They do nerve specialties along with other things but they are who did my nerve blocks and neuro frequency lesioning (basically they microwave nerves to destroy them) procedures by them. They do muscle work. They also coordinated my physical therapy for migraines. It’s worth checking into seeing if it might be something for you to consider. I know all of us migraine sufferes are always Looking for something new to try.

  82. Kim says:

    Diane,
    Interesting. I never heard of that. I don’t need to see a headache doctor anymore. I don’t even take any meds for migraines anymore. It all stopped when I had the implant. I only use nausea meds. Hopefully, you can cut out the preventive meds after surgery. It all depends on how much your migraine pain is reduced. I don’t think knocking you out is crazy if you wake up w/o pain.

  83. Diane sills says:

    Kerrie Smyres, i have a few questions to ask you if ok. If you are on Facebook I will friend you and we can message that way. Thank you

  84. Diane sills says:

    Kim, I emailed you! ☺️

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