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)?
Kim,
I am so glad you had success with the Reed procedure and no longer will need it! That is awesome. I just had surgery a week ago; and have not had a migraine!
Continual pain free living for you!
Blessings,
Hannah
I got the reed procedure in 2013. I’m looking to get it out because I cured my daily migraine of 20 years. I am so grateful for the Reed procedure giving me 80% relief but I no longer need it. I’m glad I found out the truth. There are many known causes to chronic migraine. Genetics plays a role but there is still a cause. My blog lists some possibilities. Never give up searching for the causes! Infections and toxins in your body that you don’t know about can cause chronic migraine. I’m so I’m cured! Everyone know it’s possible to be pain-free!!
Did you get it removed?
Where were the incisions on your body made to remove it all?
How was recovery on it?
Who did the actual removal?
Thank you, Diane
I haven’t had it taken out yet.
I have suffered with intense migraines for 14 1/2 years. I have tried over 30 preventive medicines with nothing working including Aimovig. Even abortive medicines do not work well. I also have tried diet, exercise, massage, accupuncture, Botox, nerve blicks, spheno cath, and more with no success. I even spent a week at Diamond Headache Clinic. I am a 41 single mom and have a 14 year old son. I had practically given up hope for migraines. My neurologist had no idea what to do with me. I was not going to give up and found Reed Migraine Center. I did not like the cost; but I knew somehow it would work. God opened doors for me in terms of others wanting to help financially. I am on Medicare and Medicaid so the procedure would not be covered. However, I decided to do the trial in June. It worked so well. I actually had a decrease in my migraines by 99%. I did not have to take any triptans and I was able to nap and do lots of reading because I did not have the migraines. I was so overjoyed! I am going back a week from Monday for the permanent. I highly recommended this procedure! I feel like I will be able to have a more purposeful life! If anybody has questions, please feel free to ask.
I had the Occipital and Peripheral Nerve Stimulator surgery last year at the Reed Migraine Center in Dallas, Texas. The Trial surgery in May of ‘17 and the permanent surgery in June of ‘17 after suffering for thirty years of chronic migraines, 5 to 6 days a week I was miserable with migraines. I have done every therapy out there, saw every Dr that thought they could help, and meds well have been on about 40 different meds over the years to try to find relief.
My problem was that after battling with my Insurance for almost a year and a half they said a FINAL NO, that they would not cover the procedure. I was so heartbroken but not giving up. Being a Mom of four sons, finding the $57,000. needed to cover the surgery was not going to happen. My husband works very hard for our family but extra money sitting around is not something we have.
I am beyond lucky though that a family member who is fairly well off, offered to cover the cost of surgery. After seeing me suffer all these years, they wanted to help me out of the misery. I couldn’t believe it! I felt for once, something is going my way.
What I will tell you is that, the Trial surgery is a breeze, the Permanent surgery, a breeze too. I am not bothered by needles, nor really afraid of surgery when I know what I was doing could hopefully give me such relief. I just had to fly to Texas twice from FL and stay at a hotel for a few days each time I went.
The Stimulator is not an instant relief gadget. I am still happy I did it. I had hoped to have less migraines but as soon as I feel one coming on, I turn my Stim on or change the settings. I definitely feel that my migraines do not get as bad as they used to. The fact that I only went to the ER once in the past year is an all time best for me! If you are hoping for the complete end to your migraines then your hoping too high. Like most chronic migrainuers, one less migraine a week is a good week. If anyone had any questions, I’d be glad to answer them. I wish you all a pain free life!
I don’t like to discourage people and I’ve really had a wonderful go of it. I would say probably 80% better. I went from being in bed or on the bathroom floor more days then not to having what I call “headaches” which u can’t even compare to a migraine. I wouldn’t ever regret having the implants. However, I have been experiencing headaches more frequently and confess I’m afraid migraines are coming back into my life again. I am back to pain pills, Zofran, sumatriptan shots every couple of weeks because of pretty severe migraines again. I guess I shouldn’t complain because only 6 migraines in a month isn’t anything compared to what some people have. My husband is afraid it has possibly run its course and I am Blessed to have the relief I have had since. Mechanically everything is working fine. I feel no change in it nor the positioning of the leads are still in place. My doctor is of no help. But that’s another story. Have u heard of anyone else slipping back into having migraines again after years of success with the implants?
Hi Dianne, that is unfortunate it isn’t helping as much. Mine is over 4 years and still working. I encourage you to find out the cause of your pain. It took me 20 years and getting an implant to finally get to the cause. I have a blog that talks about things that headache specialists don’t look at that can cause migraines. For me the implant was a huge stepping stone in getting to the cause. If I did not have the implant I would still be laying in a dark room in pain. There are many things (infections & diseases) that cause migraines/headaches. Check out my blog at amigraineurslife.wordpress.com. I am now able to turn my implant off for weeks at a time. I am still healing but treating the causes is what it getting rid of them. Headache specialists only give pills to abort a migraine or prevent one. They are not trained in determining the cause.
Bobbie something went haywire here. I see your comment to me was made today and mine was posted on July 19th. Maybe it’s back on track now. Do u have a neuro stimulator? I had a few questions if you do. Thank you.
Thank you Kim. I couldn’t get any contact on that page either. But I was able to sign up, so maybe I’ll get an email from her. Do u have a neuro stimulator?
Yes, I believe we emailed a few times before you got yours. I did the Reed Procedure in 2013.
Kim, do u know who’s website this is, moderator? To let her know about the delay. Disheartening that someone was reaching out for support and received nothing back in response. I went to home page and clicked on contact but it makes no response. Hmmmm. Angella we would like to hear how you are doing and hope all is well!!
I believe it’s Kerrie Smyres. You might be able to contact her via migraine.com
I receives this post via email today but noted it’s dated on September 2nd and today is now January 15th. I’m not sure why randomly it came to my email at such a late date. Angella I’m sorry I would have responded if it would have come into my email in September. I would have told u to not be discouraged because it will get better. I remember thinking it was the biggest mistake I had ever made because the pain was so bad. But I was fine after the first 2-3 weeks. Hope it’s going good for you!!
@Diane, I just got it too. Weird
@Angellady I hope you are healing by know and the implant is helping. Sorry, I just saw this too.
@Angellady, please know I’m praying for your pain… I hope it is short lived!
I had the omega procedure done a week ago and true I have no headaches but where the incisions are and the battery pack are may hurt worse than ever. I just lay at night and cry it hurts so bad. How long does it take for your body to adjust? I can’t live like this because it hurts too much. I can’t sleep any direction without feeling pain. I’m still on pain killers from the surgery. I thought I would miss two days of work and I’m going on a week. Someone help me because I am just sick.
A
I’m sure u can contact the doctors office and they can give you more financial information. Different doctors might have financing available. My loophole they found for payment was that u my insurance company paid out-of-network at the an in-network amount. Being that there was no provider in-network that did this procedure. I’m not sure what treatments you have has. You can check what the criteria you have to have to have for the procedure to be done. Basically the more things u have had tried the better your chances are that your insurance approves. If u need ideals let me know. I think I’ve tried almost everything out. If it’s found your not a candidate there still are things you probably haven’t tried.
Awesome, helpful advice, Diane!!! God bless!
It will probably depend on which facility you go to, but I’ve been reassured that they will work with me on making the payments.
Thank you so much! I’ll be traveling to the Dallas office, Elizabeth.
I am a single mom, 46 yrs old, and my Botox miracle has been dwindling in effectiveness over the past year. (31 injections every 3 mos) Here is my fear. I feel, in my heart, after much research and praying, that I need to try and go to Dallas to try this procedure at Reed. What terrifies me is, even if insurance will cover it, HOW in the world will I afford the copays? I’m petrified that it’s still going to cost thousands that I don’t have. I am so tired of suffering though. I’m tired of pain meds, and my neuro is wonderful but has said Botox was my last hope (unless they come out with a miracle cure tomorrow)… Do they offer payment plans, or assistance in ANY way with the copays?
Congratulations!! I’m so happy for you. I had the Omega procedure and it was life changing for me. I wanted to make note that if you haven’t heard of Sumavel Does Pro Injections thst you check into it. For breakthrough migraines I use that along with Zofran and it helps considerably. Enjoy the relief!!
I had the Omega procedure in April, and since then, I actually have days without pain. I’m still stupid half the time and my memory is crap, but I’m able to function in the world about 70% of the time. It isn’t a perfect solution, but combined with acupuncture, preventatives, and the occasional Indocin for pain, I’m happy with the improvement. As I build up my strength and stamina, I think everything will continue to improve. (I was in bed for about a year, unable to function because of the pain.)
Hi, I just found out about the Reed Procedure, actually have my phone interview in 10 hours for it. I’ve had chronic intractible migraines for 15 years now. I’m actually on disability for them, and I have Medicare and Medicaid. I’m allergic to triptans, Botox doesn’t work and neither do nerve blocks. There are no telling how many meds I’ve tried to prevent and stop migraines. It gets embarrassing when the ER staff know you by name. My problem is that I live in MS and will have to drive to Dallas to get the Reed Procedure done. Any chance someone knows of a doctor that does this surgery closer to Meridian that takes Medicare? I’d really appreciate any help, advice, and support I can get. Thanks!
If you are having migraines everyday, you really should consider having the Omega procedure. It has been 2 weeks since my surgery and my migraine pain is all but a memory. Sometimes the pain starts to peak through, but then I just adjust my settings and it is all gravy. I’m very happy with my results.
My migraines are due from a auto accident that I was in over a 50 years ago. My entire face was destroyed when it impacted a dashboard of a pickup truck. The truck did not have padding on the dashboard back in that year nor did they have seat belts.
I suffered from a closed/open head injury that has resulted from reconstructive surgeries since 1966 thru today. I have bone fragments in my brain that are tiny and some from time to time can attach them selves to my jaw bone hinges. When that happens I have to go and get those removed due to they prevent normal jaw function.
Closed head injuries weren’t top when the accident happened. I don’t even think that the doctors even knew the effects that went along with them at that time. I know they had more important issues to be concerned with on my case like rebuilding my nose from nothing, setting jaws, setting cheek bones and wiring them in place making sure vision wasn’t lost in the right eye. Over the next 50 years there have been more surgeries then 40 for fixing my nose, jaws, eye, tract and so on. I was very lucky to get the 3 best plastic surgeon in the world by chance.
The migraines are from the closed head injury (even through the most current doctor said that there isn’t proof that connects closed head injuries with migraines.) Sorry I just don’t believe that. Your brain was not designed to be slammed into a solid object at 50 mph and turned to jello without side effects.
My first doctor that diagnosed my migraines told me that I was lucky that if all the lasting effect that I got from the accident was migraines. At least I didn’t have to learn to walk, talk, east and dress myself all over The pain in my head with these migraines are just another reminder they are just everyday. When they get so bad I can’t take it any more I have asked my husband to cut my head off a couple of times.
With the government tightening the control on pain meds doesn’t help those of us who don’t abuse our meds but actual need them to survive. If I was going to be addicted it would have been years and years ago when I had to take and could have injectable pain meds at home. I refused to have those drugs back then, now I just need to have my meds available to me when I need them.
I have been checking into the Omega Prodedure, but am on the fence.
Laura S, I am so sorry that you have suffered so much from an auto accident. I think the best is to contact the doctors that do the implants to see if you’re a candidate for it. I’m happy with mine and it’s been over 3 1/2 years. I have The Reed Procedure which is the same as The Omega. Dr. Reed developed both. At least with the trial you can see if it helps before doing a permanent implant. Good luck! I hope you get some relief!! Keep us posted!
I had the Reed Procedure performed in 2014 and it was a game changer for me. My migraines have also lessened in occurrence. I went to Dallas for the procedure, and there have been no complications, and not even problems with TSA. My unit is implanted up near my left collarbone, not by my hip. Insurance approved coverage for the trial and when Reed submitted the results of my trial, within 2 weeks I had approval for the permanent placement. I’m not 100% sure of what I paid, because I had several medical expenses that year, but I think it was under $9K for both. Boston Scientific is the manufacturer of my device. I haven’t had to have adjustments made, but that might be where the only negative part would be (I’d probably have to drive a bit from where I live to meet up with a programmer).
The equipment company has reps all over the US. It should not be a problem and they will give you the name or number to call after surgery.
Kim do you know how you meet with reps for the equipment after the surgery if you do not live in the same city as where you had the surgery? I believe you mentioned that you had to have your’s adjusted a number of times for over a year afterwards. Even if I go to the Reed Migraine Center in Dallas that would be difficult for me to get there for follow-ups.
My mother has had severe migraines since she was 18 years old. She is now 66 and still suffers from them. They are extremely debilitating, usually lasting 2-3 days. She suffered from a stroke a few years back and she had cardiac work up while in the hospital. They found she had a Atrial Septal Defect that probably caused the stroke, and could be a contributor to her migraines. She opted to have the ASD closed with no relief. She had tried everything else. I believe some people are just going to have them. I suffer from them as well, but not as severe as my mom’s.
Linda, so sorry your mother is suffering so much but there is always a cause. It’s not true that some people are just going to have them. I wish your mother well and hope she finds relief. And you too! We all know migraines suck!
Hi, I am looking into the Reed/Omega Procedure on a rec from a headache specialist. I have had migraines all my life & Chronic Daily Migraines, 24/7, for 26 yrs. I have spoken with the Reed Migraine Center in Dallas & the problem is that I have Medicare as my primary insurance. They said that Medicare will cover the equipment only. There is another migraine center in Dallas that does the procedure but per their website they also do not take Medicare. Does anyone know of a doctor in the US who does the procedure & accepts Medicare?
Janet, I don’t know any other doctors that do this specific procedure. I wish Medicare would cover it for you. So sorry! I know some places do ONS (occipital nerve stimulatators) only. But I would still have pain everyday if I didn’t have the 4 leads, occipital (2) and Supraorbital(2). Maybe do a fundraising online page to help you raise the money. It’s really a life changing procedure if it works for you!!
Great! Dr. Reed developed the procedure and his partner split off and named his The Omega so it’s the same great procedure. Thanks for connecting on my blog. It’s dealing with normal surgical pain and healing that isn’t so bad. Because I didn’t have a migraine that made it all worth it. The permanent was easier than the trial because you don’t have all the wires hanging out everywhere and trying to sleep with all that. My equipment is St. Jude and I have a great rep. I’ll email you details if yours is St. Jude since we live close. Best of luck!!! Keep me posted!
Kim, I am doing the Omega in Phoenix. Thanks for the input, I’ll be patient and keep working with the reps after the surgery. I know I am going to be in Phoenix for a week after, but how was the recovery after the surgery beyond that week? I’m just curious about how I will be feeling for the next few weeks.
Amber, You’re welcome! Anytime. I’m happy to help and happy to hear that the trial worked for you. So awesome! Be patient after surgery because you need time to heal from surgery just like any other surgery. The implant is so different than anything else you have tried so it shouldn’t stop working like other things. Are you getting the Reed Procedure?
Kim, Thank you so much! I just did my trial and it worked great, and am scheduled for the perm implant in September. I am happy to be getting it done but am still concerned that like everything else I have tried it will stop working after some time. It seemed like everyone lasts about 2 or so years and then the success is over. I’m thrilled to hear that you are using the reps and it is continuing to work. I will make sure to take your advice and see the rep whenever I can’t get relief. Thank you so much for responding.
Amber, I’ve had mine for over 3 years and still working great! No, you do not have to pay for your rep. You can see your rep anytime. Whenever I felt I could not get rid of the pain I would make an appointment with my rep and then everything was fine. I never take any migraine meds I just adjust my stimulator. It’s the greatest thing ever! And that’s why I encourage everyone to contact their rep anytime. You can see more on my blog at amigraineurslife.wordpress.com and I’m always happy to answer questions. There is a lot of mis-information online and I’m happy to share my experience as a patient.
Kim – You said the first two years you saw you rep a lot. How long have you now had the stimulator? I was noticing that most people have found the stimulator stops working after a couple of years. I’m curious if that just means that you need to continue to make adjustments every so often to the programs for it to keep working. Also, when you see the rep do they charge you or your insurance company for each visit?
Hi Lisa and Diane, I keep mine on 24/7 too. I like to keep it low if I can but somedays need it high or really high. Continue to see your rep Lisa. I saw my rep for the first 2 years a lot. I don’t see her much anymore but they are very helpful. I don’t use any migraine abortive drugs at all mostly because they have never helped me. I usually can just adjust my stimulator. Also, I just found out that Zofran dissolving tablets have aspartame in it so I stopped using it. That can be a huge migraine trigger. Many years ago I did have a prescription for dilaudid but don’t now. Unfortunately, I have Lyme disease and many other health issues so I use other pain meds. But so happy I don’t have the migraine pain 90% of the time.
Kim- I do keep my stimulator on 24/7. Sometimes, I find that annoying and turn it down low, then readjust as needed depending on severity of headache. How do you manage yours?
Sumavel DosePro Injections have given me the most & quickest relief of everything I have tried. From physical therapy, nerve blocks, Botox, radio frequency lesioning of the nerves and of course every medication out there. I now have the Omega and it has decrease the intensity of my migraine by 80%. I still use Sumavel DoesPro for break through migraines as well a Zofran for the nausea.
Lisa Foreman, I noted u said u take dilauidid. When I have had to go to the ER that is what they give me. My doctor said that it is not given as a home prescription. Can you tell me what exactly is your script wrote for? Another ideal is Sumavel Dosepro injections. You can administer them at home yourself. I found this is the best relief I can get from migraines and I get some relief in less then 15 minutes. It’s not a narcotic nor pain reliever. It causes narrowing the blood vessels in the brain stem.
Hi Lisa, Do you keep yours on 24/7? Or do you turn it on when you need it?
I am really happy to read that so many people are getting relief from the omega or reed procedure for migraines. I had the omega trial almost a year ago. I had a 100% relief for that week. I had the Reed procedure for the permanent placement. I had 3 weeks that were fabulous. Since then, it has been a hit or miss situation with more miss than hits. I had to have 2 leads repositioned 3 months ago. Since then I haven’t had much luck with the programming to get good relief. I have had daily migraines for almost 10 years. I am on medicare. Medicare ended up denying my Omega trial, after the fact. Medicare did cover, almost completely, my permanent placement (Reed Procedure in Dallas). I love the way the stim. feels, just wish I could get better pain relief from it. I thought the recovery of all 3 surgeries was fairly minimal in terms of pain. The ‘tightness’ in my neck was my biggest complaint. I have a battery in my chest. Since getting the occipital nerve stem for migraines I still get botox every 2 months, still see a pain management dr., still take methadone 4 times a day, still use dilaudid as needed for migraines, still take zofran for nausea, still take fioricet with the dilaudid for migraines. Would I do the occipital nerve stimulation surgery again? Yes, I would. I haven’t given up on it yet, I think I just haven’t gotten the right settings yet. I have a husband, many children and grandchildren and would do anything if I even thought there was a possibility for relief. I gave up a career working as an RN in Labor and Delivery due to these headaches. I would love to have my life back as it was. I do not ever see that happening, but I do have the hope of getting the settings better to get some migraine relief, and in the meantime I will continue to work on diet and exercise because those things do help.
That’s cool! We don’t have that but should.
Kim, I also found there is a spot on my driver’s liscence that has a box to check for medical alert.
Kim. Yes it’s with my driver’s liscence. Excellent ideal! I would have never thought to put one on my fridge. Thank you so much for that advice. I thought about a bracelet but I don’t think ild be consistent with wearing one. Do u know if they would check for an ankle bracelet?
Kim. So sorry your insurance wouldn’t pay for it. I know it was experimental. My doctors office didn’t have anything to do with the billing. He uses an outside source that work directly with the Omega Procedure distributors, because he said they almost always get it approved where as his billing department never could. They did everything. I only had to sign releases for all of my records from all the physicians I used. They told me they received well over 200 pages of documentation and sifted through is sending my insurance company 63 of those pages. Another part of it was to have psychological testing and they didn’t submit paperwork or request before they got the results. I asked why they needed that and was told the insurance company uses that as part of their determining factor. I read my results and in relationship to migraines it said I was overly concerned with my medical health, was moderately depressed due do my medical health, was withdrawn due to my medical health & pessimistic about my medical health.
Put you card next to your drivers license and a not on your fridge? EMT’s look in wallet and on fridge for medical info. Other option is a bracelet.
Thanks Kim. I wonder what would happen if you have an MRI because of an accident and they didn’t know you have metal implants? I keep my alert card in my bilfold but still?
Thanks Kim. I never thought of what would happen if you had a head injury. I wonder what would happen if you have an MRI because of an accident and they didn’t know you have metal implants? I keep my alert card in my bilfold but still?
Hi Diane,
I have been in a situation with my knee and they just had to do surgery to go in and see what was wrong. I don’t know any other way around it.
Just like Diane I met with the company reps very frequently in the beginning. They help so much it’s important to meet with them for any concerns. In the past year I’ve met only 2 times with the rep. My insurance would not cover it because they consider it experimental. After trying for 4 months I went and did the trial. So happy I did.
Thank you Crystal. Please feel free to ask any other questions you have. I would recommend making an appointment for a consultation with a surgeon in your area who does the procedure. They will go into detail more and determine if you are a candidant. If you don’t meet criteria he will tell you that as well and offer up other migraine treatment options that you might not have had. But, the more treatments you have tried the better chances are that your insurance will approve it, if you are a candidant.
Diane – This is so very helpful. You really knew just what to ask for, and were strong in asking. I wonder how it goes if the person is not quite as informed or able to ask? I am just so glad to know that you are better and really getting some relief! THANK YOU again!
I have a question for those who have the implants. Has anyone had a situation where and MRI was needed and how that situation was handled? I had the situation occure once and an ultra-sound was given in place of it. But I’m wondering if you had a head injury what was done?
Crystal, my insurance did pay for it so there was no charge nor copayment. Our insurance company paid for it “in-network” even though the surgeon and hospital that he used was “out-of-network”. Reason being is that the insurance company must have a doctor in network that does a procedure that is deemed necessary. Since they did not, they paid in full out-of-network as of “in-network”. You can read further down on some of my other posts as to justification in insurance companies eyes as to the medical necessity of having it. You must have first out sourced all other medical options. Such as, number out medications, physical therapy, Botox, nerve blocks etc. My concern was the same as your, having the worry of coverage. I had my insurance company put it all in writing that they would cover starting with the trial procedure. Someone had once said that insurance would pay for procedure but not the trial procedure which is required. The I had them send a letter in writing of coverage for everything involved. Leeds, battery pack, hospital room, pre-opt, post opt, anithesia and devices (including charging system). Also, ongoing support of the techs as needed. It took me a couple of tries to get them to include everything. If you talked to the surgeon, he will give you a printout of exaclty what he will use and about follow-ups (it might vary from Doctor to Doctor.
I’m only two years out now. But, Everything is working well and migraines have decrease by 85-90 percent. When I do have them I no long throw-up nor in bed for days at a time. One injection and Zofran does the job. At first I met with the implant techs quite frequently for some programming adjustments. But, now I haven’t had to in about 6 months. All leads are still in place and battery pack is working fine. (I was told it would last 7-10 years). Hope that helps. Please feel free to ask any questions that you have.
Has anyone had the implant for longer than a year & a half to two years? I can’t seem to get any long term info on the procedure. Just curious how this is working out over the years.
I have chronic migraine for over 5 years, and am considering the Reed procedure since the drug approach does not give me the relief if need to care for my family and have a real life. I see a number of different things about the insurance payment – sometimes paying for the procedure, and other times not. I need to know: 1) Did your insurance pay for this procedure 2) How much did it cost 3) Did it work. Can you PLEASE help, as I really want to find a solution. I sincerely appreciate any help you can offer. My biggest fear is that the insurance says they will pay, and then they do not. I live in Texas. Thank you again – I really appreciate your help.
pavia, I’m not sure who you are referring to but I can answer questions about The Reed Procedure I had done. kimleonoudakis@yahoo.com. You can also read a lot on my blog at https://amigraineurslife.wordpress.com
hi. years ago i suffered from daily migrains. up to 5 attacks a day. the neurologist i saw prescribed ascal. a daily doses of 100 mg. as soon as i had taken my first dose the migrain stopped. every time i forget a dose the migraine is back.
I have had bad migraines since I was 24 now 65. 5 to 10 pain constantly. I got addicted to oxycodone. I am now on Suboxone. It does take care of my migraines 95%. extreme relief, mild pain, but I will have to stop my med at some time. I am worried about them coming back. I can not take opiates again.
I had suffered migraines before moving to the new house. The constant headache started after a panic attack had finished while out working in a garden. Then another migraine attack happened 2 weeks after the constant headache began, but didn’t affect the pattern of the constant headache in any way.
Peter . I agree with Kim. I also get migraine s when I was younger they got really bad after moving into a house that we leased for a year. It was awful and that house was in a flood area so basement was always damp. We moved and headaches went back to normal.( only once in a while). It may help. We did remediate our home for mold bin hopes that my son shared my sensitivity but for him no help. Maybe it will help you. I hope!
Mine is also chronic transformed migraine, constant for 12 years, never below 7/10.
I think I will most likely have to move to England, or to Belgium, France, or Germany, or potentially take part in a Clinical Trial in a foreign country. My headache started 2 months after moving house, so I’m not hugely keen on moving again, but if I have to move country to get to see a surgeon, I will do so.
Peter, have you tested your house for mold? Also try and get a food sensititivity test. It’s different than allergies. Allergies will create an immediate reaction but food sensititivies can come out days after you eat them. That’s why migraine diaries are so difficult.
Good luck. I hope something finally helps you.
Hi Peter. Yes it is my 14 year old son. He is diagnosed with chronic (transformed) migraine. Bottom line is headache 24 hours a day for past 6 months and over past year and half has only had 2 Mont break. We have tried lots of things while learning how to fight thru the medical system ( and sadly I’m a nurse so you would think that part would not be so bad). We are in the US . while I don’t know yet if our insurance is going to fund the procedure I am hopefully that he has had enough trail and failure with hospitalizations and out patient therapy that they will feelbit is worth it to pay for it . I will keep you all posted. What do you think it will take fornyou to finally get to a surgeon?
Hi MJ, I know this is a little bit after you asked but I do have some info on the Reed procedure. I suffered from severe chronic migraines from when I was 17 until I got my procedure done in November. I was 21 when it was done. I lived with horrible migraines 24 hours a day, 7 days a week, l For 2 years. I tried literally everything, but the type of migraines I have do not respond to medication. Then I found my neurologist. He recommended me to get the procedure. I waited for 6 months before the insurance would approve the trial. And another almost year before the permanant procedure. Honestly getting the stim was the best decision of my life. It gave me my life back. I have been able to come off all the medication I was prescribed. My pain is at a zero on most days now. When I start to get a migraine I turn on my stim until it passes. for me it doesn’t completely block the pain but after 10 mins it has lessened by about half. And after an hour it is usually gone. On days that I get really bad migraines it may take a few hours but it does pass. While I don’t get the pain while it on usually, I still do get some of the other symptoms during really bad migraines( nausea, light sensitivity ect) but it is still better than being in pain. I hope your son finds some relief somehow, even if it isn’t from the stimulator. If you have any other questions just let me know and I’ll be happy to answer any questions.
Stephen, so happy it worked for you too!!
MJ- As a parent, I am sure your heart is breaking. I haven’t seen an update on your son lately. I am curious to know if things are any better, or if he was able to get the Reed Procedure done. I know a 16 year old girl from my church that was having daily migraines for 2 years. She recently got the Reed procedure done in Dallas and is back in school, not taking any other pain medications and is doing quite well. I hope this is the answer that you are searching for.
Very sorry to here about your relative or friend MJ. I believe you are talking about your son?
I was just turned down by my Neurologist in Scotland for referral to Neurosurgeons/Neuromodulation in England regarding further assessment or ONS. This is the second time I’ve been turned down since Aug/Sept 2014. I’ve failed 5-6 treatments since I was turned down the first time. They are clutching at straws trying to turn it down for any ridiculous reason. They seem almost scared that a surgeon will operate.
Hi Kim and everyone else reading, its been a really bad week for him. we submitted the paperwork for the Reed Procedure and are waiting to hear. Luckily there is a doctor near our home that does the trailnsonthat part is good.
In the meantime he is getting much worse. I believe the meds are now completely uneffective for him now.
He hardly gets out of bed and when he does he is dizzy and in pain all the time. We are meeting with a new neurologist this week just to see if they can offer some relief but I think he will prob have to be admitted given how bad he feels right now. I will try to keep posting as I am so happy to find people that understand though sorry that you do because that means you share this agony. It’s so lonely for us in the normal world but I’m sure I don’t have to tell you all that. We keep searching . Kim you have given me real hope about the Reed procedue
MJ, Yes, stay hopeful.
Wow! I have read all of ya’lls comments from years ago. I had no idea others had migraines like mine. Thank you all for sharing! I am 47 years old now, with 6 kids. My migraines started when I was 13. I have 3 kids that suffer from migraine weekly. Which breaks my heart. I have Started back to work for the first time last year after 16 years raising kids. It’s very difficult to work with such severe migraines. Now my migraines are effecting my job performance. I am having to call in frequently because I can’t function to drive. And, it is giving me pause on whether or not I can finish graduate school. I had been desperate back when I was 25 and attempted suicide because I could not handle the pain. I died and was brought back… It was a serious attempt. Now, I find my self thinking about it again. I have daily headaches and migraines several days a week. I am now allergic to ALL TRIPTANS. My options are very limited for relief. The nerve stimulators were just in the experimental stage back in the 90’s. After reading all the posts and after trying all preventative meds and alternative treatments, I am going to dive head first into this! I only hope that BCBS approves this and pays for it. I am drowning in medical bills because lately it has been multiple trips to the ER. And lots of MRI’s, CR scans and specialist co-pays. Neither my neurologist or my pain management doctor do have been able to help me. I am either going to have to go on disability or am going to have to get the implant!! Life is too short! And, spending half of my life on bathroom floor or stuck on the side of the road with a migraine has robbed me of important time and time with my family. I am a crisis counselor by trade… Yet I do find it difficult to deal with this kind of pain. And I agree with many of you- it is hard to find true compassion from doctors unless they have suffered from migraines themselves. I have expressed to them that migraine pain makes many people just wish to be dead (PTOD). Y’all are all amazing! I will keep each of you in my prayers going forward. And… Please keep posting your stories and information! I got several treatments from these comments that I have never heard before. I have confidence and hope that this will help me get my life back. … I do have one question: the 300hz – 500hz. Had that been approved in the USA yet? And what is the bed side manor for Doctor Reed? Thanks again for sharing!
MJ, I would image it’s very scary for you to decide on an implant for your son at 14 years old. I do believe that there have been teenagers that have the implant but you might want to check with Reed Migraine about that. I knew the trial worked the day after the procedure because it was the first time in years I didn’t have pain. My head was in constant pain like your son. It never went away. I lived a “normal” day between a 4-6. Then when it got worse I went to the ER. No medications ever worked for me. I started a blog to share my story to help others in the same position. You can also email me with more detail questions. Amigraineurslife.wordpress.com My contact info is on the site. I really hope the trial works for him. It gave me my life back but then I found out I have Lyme Disease. The daily migraine pain is MUCH worse but Lyme Disease is pretty bad too,
Hi Kim were your headaches constant. He describes them as constant pressure which can intensify with certain activity but never less than 5/10. Has had every work up, endocrine ,cardiologist, psych and on and on and several well respected neurologists . They conclude migraine, I wanted to find someone else that had a constant headache that the procedure worked for and sound like you may be that person. As you may imagine choosing this route for my 14 year old is very scarey. Did the trial work for you? How long did it take for you to know it was working?
HI MJ,
So sorry to hear of your son’s pain. I lived with 18 years of migraines before the Reed Procedure. Mine were daily for so long I couldn’t remember what is what like not to have a migraine. I hope the trial works for your son.
Thank you Peter, we have had a difficult few months as his pain has increased despite changes to his meds and as you said the neurologist saw him in Feb and sent him home for 8 weeks . now he describes his pain as 9/10. They put him on neurontin but he had a reaction to it so just left him on the rest of the meds that weren’t working to begin with. I am filling out the paperwork for the evaluation for the Reed Procedure and hope for the best. We have also scheduled and appointment with a pain management MD to see if he has any suggestions who does different nerve blocks than the neurologist does. I just worry about his quality of life and how much he has missed. I’m to the point where I would give almost anything to make him well.
Hi , my son has had a headache that originally appeared a week after a febrile illness. That headache lasted about six months respond to she but came back 2 weeks after the hospital stay. During the two month he had a break he had a few episodes lasting a few hours of the same headache that went away on its own. This Sept month 10 since original start the headache returned and about 4 days in had a fever that lasted about a day and a half. But the headache stayed , now on our fourth neurologist he is diagnosed with new daily persistent headache syndrome. He was hospitalized and she worked but headache came back in two weeks. he had already missed the second half of 7th grade and now going on 5th month of home instruction in 8th grade. I am now looking into the reed procedure for him as i am hoping to get him back to his life. Can anyone tell me if they have experience with this with a 14 year old ? We are getting desperate as we watch him suffer and can’t find ways to help. We have been to specialists at two major medical,centers on NYC who try something then send him home for weeks until his next appointment with no input on helping him manage. I feel as though he is looking his childhood and there must be a better way to help him , so would like to see if this is a viable option.
Sorry to hear about your son’s suffering MJ. Unfortunately the picture you paint of doctors sending your son home for weeks is quite normal in chronic headache treatment. I describe this as the “pill or medication merry go round”. “Try this drug, come back and see me in 4/8/12 weeks.”
Usually, in most chronic headache patients the drugs are either completely or broadly speaking, ineffective, the waiting for relief actually enhances feelings of desperation, and being made to wait perpetually can increase the risk of suicide. Every day with a constant headache is a day not lived, and can feel like a day dying for a sufferer.
I don’t know about the reed procedure or headache surgery in under 16’s or under 18’s, but I would recommend looking in to it. Pills and medication are extremely unlikely to get anyone their life back. There are non-invasive neuromodulation devices, but these are not particularly aimed at NDPH (Cefaly, Eneura spring TMS, electrocore VNS). Good luck. I hope your son gets the relief he needs. I’ve had a constant headache since April 14th 2004. Almost 12 years.
Diane Sills- My pain management dr prescribes 4mg of dilaudid (by mouth) as needed for breakthrough pain, every 6 hours if needed. My dr. writes for 120 a month. I usually take 8mg of dilaudid at a time. Because I haven’t been getting any relief, he added fioricet to be taken with that. Fioricet is known to cause rebound headaches so I limit that as much as possible. I went back for reprogramming of my stimulator last week and had an almost pain free week, without needing any dilaudid, fioricet or zofran. WHOO HOOO! Unfortunately, I have a killer migraine today from rain yesterday and cloudy weather today. But, each day is a new experience. For the first time in quite some time, I am hopeful that my settings are good.
I would like to suggest getting a blood test for food sensititives. Doing the food diary is difficult because if you are sensititive to a food you may not notice a reaction the same day. I have been working with a Naturopathic Doctor for my Lyme disease. She believes my migraines are from Lyme disease and food sensititives. I have been doing ozone IV treatments too.
Hi Kris,
Great news that it’s helping your migraines. Mine was done in July 2013 from Reed in Dallas too. I don’t have any pain in my neck from the leads. And, my battery is in my butt so I haven’t noticed if it has moved.
Also, check out my blog at amigraineururslife.wordpress.com
I have just been diagnosed with Lyme disease. And, We are pretty sure my 20 years of migraines and depression are due to Lyme disease.
Hi there! So happy to see all of the success stories. I had my procedure done by Reed in Dallas in July. I have gone from have migraines seven days a week to one or two a week. It is wonderful. I have two issues I am dealing with however, and I would like to know if anyone else had/has anything similar, and if so, what did they do. I have severe internal scar tissue build up around the leads in the back of my neck. At this point it hurts so much it is causing my entire body to shake and keeping me up at night. The second thing is, my battery is at my should/above my breast area and it shifted so now it is protruding at an odd angle and sometimes causes pain and bruising. I am taking these in stride because honestly, after having migraines most of my life (since I was 3, I am now 38), it is so nice to have a respite. I have a follow up appt. on Friday, I am hoping to get some relief for these side effects. If anyone has suggestions, please let me know. Thanks!
Here is my better petition.
Can be signed by international people too. Need all your support.
https://www.change.org/p/rt-hon-jeremy-hunt-mp-rt-hon-david-cameron-mp-shona-robison-msp-creation-of-specialist-neurosurgical-service-for-intractable-headache-patients-in-scotland
It needs 5 signatures to become visible
My petition:
Creation of Neurosurgical service for intractable headache patients in Scotland
There are no Neurosurgeons based in Scotland who perform ONS (Occipital Nerve Stimulation) on intractable headache sufferers such as Chronic Migraine, New Daily Persistent Headache (NDPH), Occipital Neuralgia, and Hemicrania Continua. This means all patients must be referred to England.
With regard to Chronic Migraine, It is estimated that this condition affects fewer than 1 percent of the population, but this still means that there over 610,000 chronic migraine sufferers in the UK. Due to the nature and length of time that the sufferer is affected, people with chronic migraine experience significantly more time absent from work, school, leisure, housework and social activities than episodic migraine patients. Often these patients are entirely unresponsive to all treatments.
To any British Citizens, or UK residents, please sign my petition.
https://petition.parliament.uk/petitions/111734/sponsors/ICJx5qqkEnVwQOX3Z
Peter, have you seen any Naturopathic Doctors? Maybe they may be able to help.
That’s too bad Peter. I had to pay for my surgery and it was expensive. Also, 2 leads in the front is the best because you can control each lead individually. So, if my head hurts on the left I can just turn that side up. Good luck! I hope you find something that helps.
I do not have the money to travel to the US for that Kim, either the trial or the surgery, at present.
The cost for the equipment for the surgery is around £7,000 (10,000 euros) in Antwerp Belgium, and then there are the costs of hospital/surgeon and admission etc. But even with flights hotel stay etc, you can save around £10,000 by having the surgery in Belgium compared to the UK. ONS costs around £25,000 in the UK, as does high cervical spinal cord stimulation.
With regard to ONS, I think for the supraorbital lead in the forehead 1 lead could be possible (if it’s a long 16 contact cylindrical lead), but maybe 2 leads would be better. I don’t know.
I’m sure paddle electodes are better for the occipital nerves at the back, they have less chance of migrating. There are 3-5 papers written on this topic on Pubmed.
Thanks Peter, I checked out the website. I wonder what their success rate is.
Have you thought about doing a trial of the Neuro-Stimulator in the US at the Reed Migraine Centers (Dallas, Texas)? I know they have people from other countries come to get it done. To me 4 leads is the key, occipital and supraorbital.
Eneura tms is a device that fires magnetic pulses into the back of the brain to try to stop the migraine in its tracks or affect the csd cortical spreading depression involved in migraine. It can be used in episodic or chronic migraine supposedly.
http://Www.eneura.co.uk
http://Www.eneura.com
Google spring tms
And yes covering the forehead with leads means the head has more coverage and the supraorbital nerves are stimulated which feeds into the trigeminal system which connects to the brainstem. All chronic migraine sufferers have dysfunctional (hyperactive) brainstems (and hypothalamus )shown on fmri and pet.
I almost got referred onto a trial for cervical spinal cord stimulation for chronic migraine but my nhs health trust would not take care of the aftercare costs after the 12-15 month trial would have ceased.
The Enuera Spring TMS did not work for me. I tried it, paying out of pocket, since my insurance did not cover it. I felt like it moved my headaches to the top and front. Your mileage may vary.
Karen
Hi Peter,
What is eneura tms? The key for me is having 4 leads, 2 over occipital nerves in the back of my head and 2 over my eyebrows. If I didn’t have the 2 over my eyebrows I would still have a migraine everyday. Mine haven’t moved at all and it’s been over 2 years.
I hope you find something that helps.
Tried cefaly and had no response.
Just tried DHE and had a cardiac reaction in hospital during the second infusion. Waiting to hear if I can can try eneura tms but I am highly skeptical of anything non surgical when the pain is 7/10 baseline constant.
The important thing about ons is to have paddle electrodes at the back of head not cylindrical they migrate too easily.
I had an occipital nerve stimulator placed for migraine which was really negatively affecting my life and which occurred so frequently that it was difficult to control them with any of the PMR or medications I tried. It was very effective for me, but I did have to have it removed after approximately 9 months due to infection which was treated unsuccessfully with antibiotics 3 times. If these things (surgery, etc.) are not tried, how do we know what might be effective in the short or long-term. Would I go through it again? Absolutely!
Hi Kerrie, I was just re-reading some posts and I noticed yoga helps you. Do you still daily headache or migraine?
Lisa, you can email me at kimleonoudakis@yahoo.com. I just sent a message to them. The are in Dallas. Kim
Hi Lisa,
I will contact the Reed Migraine center for you. Dr. Reed invented the implant for Migraines and just gave the other doctors right to call it something different so they named it the Onega Procedure. I’m a patient ambassadors for them. If you send me your email I can follow up with you privately. Kim
I had the omega trial about 4 weeks ago with Dr. Schumacher. Total relief from migraines. Then I was referred me to Dr. Pierce (because he accepts medicare) for the permanent Omega procedure to be done. I was scheduled for this Monday at 8 am (today is Friday). Everything was totally confirmed by hospital and by his office earlier today. Then…. I get a call that he doesn’t have the privileges to perform this procedure at the hospital next to his office, and the surgery centers he’s affiliated with doesn’t accept medicare. Now I am waiting for a return call from Christina, the office manager at Dr. Schumacher’s office. I have not have good luck with her ever returning a phone call when I was trying to get the trial done. I left her more than 12 messages prior to getting the trial scheduled, without ever getting one return phone call. I am frustrated beyond belief at this point. Anyone know a neurosurgeon in Dallas that accepts medicare and actually does the permanent procedure?
Kim, I emailed you! ☺️
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
Diane, you can contact me on The Daily Headache’s Facebook page: https://www.facebook.com/TheDailyHeadache?ref=hl. Just click the message button. I’m also going to send you an email, if you’d prefer to communicate that way.
Take care,
Kerrie
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.
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.
Diana, thanks for the tip!
Take care,
Kerrie
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.
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
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.
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
Here it is Karen,
https://amigraineurslife.wordpress.com
Can you post the address to your blog?
Karen,
I started a blog just recently about my reed procedure. I just want to help other migraine sufferers.
Good luck with your surgery.
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.
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.
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
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?
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
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.
@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!!!
@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.
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.
Diane you can email me at kim@milesformigraine.org
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.
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?
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
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.
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.
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.
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.
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.
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?
That is so awesome! I hope you get your perm and it works as well as mine does! Great news!
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?
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.
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.
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.
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.
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!
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.
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!
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.
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.
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.
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.
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.
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!!
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.
@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.
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!
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.
Emily, thanks for sharing your experience. I’m sorry it didn’t work for you.
Take care,
Kerrie
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!!
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.
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.
I believe I have great success with my stimulator because I have 4 leads. Occipital and Supraorbital nerves.
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.
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).
I have not.
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
After having the Omega Procedure, has anyone continued having Botox?
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
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
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
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
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
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.
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!
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!
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
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.
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
Laura,
Have you checked out the Reed Migraine Center in Dallas? See my story at https://www.bravelets.com/bravepage/a-migraineur-s-life
Yes, you need your life back!
Best wishes!!
Laura, I’m sorry you’re in such a rough spot right now. Maxalt and Imitrex are triptans, but there are five other drugs in the same category. If you’ve stopped responding to Maxalt and Imitrex, it’s worth talking to your doctor about trying others. There are also a ton of migraine preventive medications. Here’s a list of the ones with the highest rates of efficacy: http://migraine.com/blog/migraine-preventives-start/. You have lots of treatment options. Here’s a list of some others: http://migraine.com/blog/tried-them-all/.
Take care,
Kerrie
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
Kim, I’m so glad it’s been helpful for you!
Take care,
Kerrie
Thanks Kerrie,
I really would love to see insurance pay for this but it’s not FDA approved for migraines yet. Sad.
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
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.
I’m so glad it has helped you, Michael!
Take care,
Kerrie
Michael, I had my stimulator done by Dr. Bulger at the Reed Migraine Center in Dallas too. Mine was July 2013. I’m so happy I did it. I got my life back. Glad you got good results too.
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.
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.
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!!
I had Omega procedure through Migraine Treatment Center of America out of Dallas Texas. I live in MS.
I have BCBS insurance and they covered my trial and perm. It is expensive. 60,000 dollar procedure. But I was willing to do anything. I was at my breaking point. Wanted it all to end. I had 3 incision sights for the trial and 5 for the perm. I have a knot in the back of my neck from the leads (haven’t healed just yet) and you can cell the battery pack on your chest. It’s in same area as my grandmothers pacemaker. She said it gets better as it heals. This site hurt like crazy (not even gonna lie)
But no headache since dec.31 when perm procedure was don’t. I can deal with the recovery from surgery! I excited and hopeful to get back to life and actually LIVE for a change instead of lay in my dark cool room for days because of being sick with a migraine. Best of luck and you can appeal your insurance and fight for them to pay for your procedure.
I had nothing to lose. I had a headache everyday but 2 days I can remember in 15. It was heaven.
So happy for you!!
I too have had the procedure with successful results. My battery iis placed in my upper hip. I wanted to make note that I had my procedure done in Michigan, because I have noted that it appears the majority have had theirs done in Texas, where it originated from. My insurance did cover it. They have an outside company that works with insurance companies to get this to be covered. They do it all. All I had to do was sign releases from every doctor I have ever seen for migraines and they went from there. Mine was paid in full out-of-network based upon there was no physician in-network that does the procedure. They find out what is necessary and the requirements that my insurance company needs to get it covered. They know how to submit the request to assure it happens. I personally recommend this procedure. As most of u know anything is worth trying. Everything can be removed from the body so it’s not something that u have to have for life if you don’t want it to be there. Recovery was rougher then I thought it would be. But, bottom line well worth it.
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.
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.
I had the greater occipital nerve decompression surgery done by one of the doctors at UT Southwestern in Dallas, Texas about four years ago. I was supposed to have work done on the lower occipital nerves but I had too much damage to the greater occipital nerves. The migraines lessened in severity very much & about two years ago the chronic severe migraines returned. My neurologist & the surgeon are getting together to see if I would benefit from the lower occipital nerve decompression. I have been on every preventitive medication, physical therapy, conferences with phyc doctor, missed numerous important family events & have spent entirely too many days/nights alone in a cold dark room. I really want relief, my family & my life back.
Hi Olivia,
I have not had decompression surgery I’ve had a neuro-stimulator implanted that gave me my life back. Check out my blog at amigraineurslife.wordpress.org
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.
Please let us know if Cefaly works for you. Some people are reporting great success with it.
justin,
please let everyone know how the cefaly worked for you, my wife is pretty much restricted to the house due to migraines. any help or advise would be welcomed
I have had chronic migraines for 60 years. The cefaly gave me a headache. I can’t take most preventative medications because I have super low blood pressure. I take an anti seizure medication as a preventative. I have multiple kinds of migraines, back of head, left eye, right eye, whole head. My left eye migraines are usually cluster migraines. I cannot take any sort of NSAID (aspirin, advil, anti inflammatory, none at all). I take sumatriptan, if that doesn’t work I take an anti nausea suppository. Normally I can’t swallow anything at this point. When I am able to, I take acetaminophen and drink water. There are two ways I “deal” with migraines. One is to “putter about”. Doing something that requires minimal critical thinking, but some physical and brain power. Dishes, laundry, etc. Wear earplugs if necessary. If at work, do the easy stuff that does not require huge effort, your boss would most likely rather have you there than not, communication is key. Or two, lie down, dark room, no noise. I don’t do well with this as I am ADD. I have done bio feedback as well, yikes! What this neans is that for me, I separate myself from the pain as much as possible, thinking about it makes it worse, so I distract myself.
You can buy it without a doctors prescription. I know someone that it works for but she also takes a daily medication as well.
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.
I know you posted long time ago but I’m not sure if I ever responded to you. The Omega Procedure and The Reed Procedure are the same. Dr. Reed developed it.
Pros: (1) It gave me my life back and now I live 95% pain free. (2) You can do a trial before having a permanent implant. (3) I don’t take any medications for my migraines anymore.
Cons: (1) insurance may not cover it (2) Constant tingling in my head 24 hours a day because I have to have mine in 24/7. I understand that possibly in the future they might have one that you can’t feel the stimulation (3) Eqipment failure is possible. My external charger broke a few times. The company overnights a new one.
I had the trial and had mixed results – front hurt, back seemed to help. I have scheduled the permanent occipital implant for December of this year. My insurance covers almost all of it.
Where were most of your headaches? Did they move around or were they in once place?
Hi Karen,
Mine isn’t just an occipital nerve stimulatator. Mine are chronic daily migraines and sometimes one side was worse that the other. Sometimes it was my entire head that hurt. I also had severe burning pain in the back of my head. It was so bad it hurt to put my head in a pillow.
Where did you do your trial?
Remember that neuro-stimulators don’t prevent migraines so its it a cure but a way to manage the pain. It masks the pain.
I had my trial in Scottsdale. The front leads made the pain worse, so we opted to just do the occipital leads. My pain moves from one side to the other, can be in the front or back, or both. No meds have worked as of yet and my headaches have become chronic and daily from a Level 2 to a Level 10. I depend more and more on hard core rescue meds, which may or may not work.
I am hoping the stimulator gives me back some pain free days. I am also trying medical marijuana.
Hi Kim,
I had the permanent stim implanted 2 weeks ago today. I am also having extreme pain in the back of my head. It feels kind of like needles that burn. The doc said it was most likely nerve damage and that it would go away in a few months. The thought of not being able to comfortably lit down for months seems daunting. How long did the pain in the back of your head last?
Was your trial the Reed or Omega Procedure?
If it gave you relief during the trial then the permanent will too.
Katie,
I hope one of my comments wasn’t confusing. I had severe pain in the back of my head before my implant. I don’t know where you got your implant. I did not have pain in the back of my head after my implant. I had some weird pain in the front and top of my head that disappeared. I had mine done at the Reed Migraine Center in Dallas so yours might be different. I hope it worked and your pain goes away.
Kim
There are devices with less or no tingling (parathesias)
Nevro corporation make a high frequency 10khz stimulator where you dont feel any tingling. Mainly for spinal cord stim but could be used for occipital nerves potentially?
And st jude medical (ANS) “prodigy” burst stimulation is reportedly very low rate of tingling some report none.
Above 300hz you dont feel much tingling.
Above 500hz you wont feel any at all.
That would be nice not to feel the tingling.
Hi Peter, I suppose you live in Belgium. So do we. I have my niece who is suffering from terrible level of migraine. She is studying in Strasbourg, but I would like to bring her here to have her examined and hopefully help her out. Can you recommend any doctor, hospital etc?
Hi there,
I live in Scotland. I have been to Belgium before for treatment for tinnitus. I need surgery for Chronic (constant 24/7 ‘transformed migraine’) but the NHS will not let me see a surgeon in the UK. I am sorry to hear about your niece. Migraines cause utterly horrendous suffering.
Yes, I am happy to recommend doctors and hospitals that can lead your niece to a recovery (hopefully).
You have not stated whether you are at the stage of looking for Neurosurgeons because the Migraine is intractable, or whether you want Neurologists to treat the headache with medications.
If you are looking for Neurosurgeons, I would recommend, Dr. Niels Kamerling or Dr. Tomas Menovsky at the UZA, in Antwerp, Belgium, or alternatively, Jean Pierre Van Buyten, at Sint Niklaas Pain Centre.
http://www.uza.be/persoon/dr-niels-kamerling
http://www.uza.be/persoon/prof-dr-tomas-menovsky
http://www.pijncentrum-aznikolaas.be
If however, you are looking for a Neurologist to assess and form a treatment plan for the headache, I would recommend, Jean Schoenen, at Liege.
http://www.chrcitadelle.be/fr/patients/services-medicaux/neurologie/schoenen-jean.html
http://reflexions.ulg.ac.be/cms/c_22059/en/schoenen-jean
I hope I have been of some assistance.
Was my information of any help?
My Personal Pros and Cons to the Omega Procedure (neuro-stimulator)
Pros: Possiblity of…decreasing number and/or intensity of migranes, stop the use of multible drugs, stopping to have to go through constant experimental procedures and numberous doctors visits, finacial relief (co-pays from doctor appointments, medications & hospital bills), improvement of your mental health and improvement on relationships, ability to stop thinking focusing only on yourself (migraines) and now able to give to others, pleasant soothing vibration sensation, multiple frequency modes and intensity control, each lead can be controlled seperately, 24 hour tech support.
Cons: painful recovery, numberous incisions, partial shaving off your hair, adjustment to sensation of vibrations, period of tech services and can be stressful finding the right ones that are most effective for you, the feeling of vibration change of intensity and location upon movement of my head, having to carry the remote with you all of the time, cannot have any future MRIs, magnetic detective screening. But, i have to add that all of these cons are more then well worth it and seem so minor compaired to the pros and getting my life back under my control and no longer a migraine controls my life.
How bad do you feel after the actual surgical procedure?
I had the surgery done by Dr. Will Kelly from Dallas Texas. He is with Migraine Treatment Center of America. I had both trial and perm procedure in Plano Texas at Plano Surgical hospital and was put in a nice private room for over night care and pain management after perm procedure.
I have Rep that keeps in contact with me and she makes sure things are going smooth. I live in MS so it was a lot of traveling 7-8 hour drive for the procedures and doctor visit to see if I was a candidate for the procedure.
Any questions you have feel free to ask me. I LOVED THE HOSPITAL STAFF. Best most caring staff my husband and I have ever experienced in a hospital stay. I’m only a week a couple days out from having my permanent procedure but willing to help in any way.
Best of luck
I find it strange that you had to travel so far for the dr’s visit in order to be a candidate. I live 2 hours away from a doctor, so I did a phone interview. It was really simple, and Hilary has been super sweet; she makes me feel like they are not going to forget about me. I am having the trial procedure on March 24th. I will post updates.
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
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.
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….
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!
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.
Adee,
I’m sorry you’re suffering so much. I hate to be a downer, but hysterectomy for migraine doesn’t have a good track record (though a recent case study reopened the debate). Here are a couple of good articles on it: http://www.achenet.org/resources/hysterectomy_and_migraine_what_can_you_expect/ and http://migraine.com/blog/expert-featured-article/bloodletting-leeches-and-hysterectomy/ I have wondered about using Lupron to induce medical menopause, like the second article talks about, as a sort of trial to see if a hysterectomy might work.
“Daily chronic migraine is crap” — I totally agree! Hang in there. Even when it feels like you’ve tried everything, there are always more options.
Take care,
Kerrie
Thanks for the great comments!
Kerrie
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.
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.
Hello,
I realize it’s been a few years out from your post but I was wondering if you found relief with your migraines and FMS? If so can you share what helps. Thank you
I will start by listing some of the prior medical treatments I have had (you might want to discuss with your neurolgist): over 25 different medications including seizure meds. Some meds were prevenative others were to treat the migraines. The most effective treatment was sumavel dose pro injections (which i adminster to myself at home), zofan, phenergan and reglan (for nausea), seditating medications (clonazepam, xanax, nausea meds, benydryl & 10mg/350 hydrocodon), had not only neurologist but a physiatrist (not a psychiatrist) who coordinated my care, oxygeyn for home use, physical therapy, massage therapy, computerized bio-feedback, nerve blocks, neuo-frequenting lasor lesioning, & neuro decompression surgery. All of them gave miniminal results, but as u know u and your physicians try everything anyone can think of. If u want more specifics about any of the above, let me know. One this that doesnt work for one might work for someone else.
It was requested that I share my experience with having the occipital nerve stimulator (Omega Procedure). I am post of almost a year. I had mine done in March 2015. If there is questions you have about the procedure itself, my lead locations, recovery, usage, tech team or how it feels please ask me. I’m limiting this post to the question i was asked about. I finally found something that has been effective more then anything else i have tried. I would say it’s 85% effective and the headaches i do get are managable with a injection of Sumavel doespro (I administer at home myself), which is not a pain medication. I no longer spend days at time laying on the bathroom floor, in the dark, silence and no movement. I have not been to the emergency room since. I have been weined off all prior medications (i was on 5 at that time) and the PRN meds just sit in my drawer. And most of all I have a life now. I wish that I would have done this years ago. But, I’m Blessed to have had the opportuinty to have it done, period. I didnt work for 15+ years because of the unpredictablity of migraines. However, I am Blessed with a wonderful husband, children, family and friends that have been supportive amd have shown nothing other then unconditonal love. I am excited to have the ability to give back now, for a change. The use of it’s frequencies and level of it has changed throughout the months and it took time to get comfortable with it. Its very importand to do your neck exersizes as scar tissue forms, to assure flexability. I havent seen the technition for any adjustments (who is available to me 24/7) for 5 months. I hope this gives encouragement to those who have not found an effective way to manage thier migraines. You have a trial prior, so u can be certain it’s something that will be effective for you.
Diane, I’m so happy you have gotten so much relief. I’m at 95% of my pain gone. My rep is still available for me, 2 and 1/2 years later. My equipment is St. Jude. I’ve been in the ER a few times because my external charger broke. I leave mine on 24/7. Great news Diane!
Kim, you said you had been to the emergency room because your “external” charger broke. Im courious as to why and what they did? I dont understand what ER could do medically about it.
I leave mine on 24/7 now too. 😊
Hi Diane,
Sorry, I must clarify. I went to the ER with a level 10 migraine because my stim shut off because the battery died. The battery died because the charger broke. They overnight a new charger but I needed meds for the migraine. It’s happened 3 times and of course always on a Friday night so I can’t get the charger until Tuesday. They don’t ever tell me why they broke.
Do the leads go up the sides of you spinal column and up the occipital nerves into the temples or temporal nerves? I am considering having it done. I have been doing Botox injections for about 2 yrs and I’m down to having them every 2 months. I started out every 3 mos, but has a hard time making it the last month.
Diana Boyd, my battery is on the right side of my hip so the wires do travel from my neck down the right side of my spine. They go in behind my ears and up my temples and over my eyebrows. I hope your try it and it works for you.
I’m scared but tired of hurting I’m looking into it now. How can we talk one on one I have so many questions
What was oxygen for??? That’s new for me
Duan, no the leads do not go into the nerves. They lay on or next to them. It is The neurostimulation impulses against the nerves (to me it feels like a vibration). It does not run down either side of my spine. It’s about an inch away from my spine going down only on the left side. My battery pack is in my hip on left side also.
Pavia, I have used oxygen for my migraines for over 7 years now. It does not make my migraines go away, however it decreases the intensity. I will take every little bit of releif I can get. It also helps with the nausea.
Hello, Im almost 20 years old and have been dealing with migraines which seems like forever now. I go tomorrow to talk to the neurologist and I’m going to bring up the omega I’m just sick of switching medications that don’t help whatsoever. How was recovery after having it? or having it outside of you’re body for trial? Do you have limitations with it being in?
Alexis, the trial was weird, but wasn’t particularly painful. Recovery from the implant itself was more intense than I expected. It took at least six weeks. The physical limitations were the biggest problem for me. Some physical movement is restricted to keep the leads from slipping. This includes yoga, which I love. Even without yoga, my leads slipped. Ultimately, I had it removed because it was ineffective. Best of luck finding relief.
Take care,
Kerrie
Alexis,
My Neurologist laughed at me when I told her I was going to do the trial of it at Reed Migraine so don’t be surprised when you get a negative response from your doctor. The trial is very awkward but if you don’t have a migraine than who cares. It’s only one week of your life. I’m not sure where Kerrie had her trial and permanent but what I remember is that if it isn’t giving you at least a 50% improvement then they wouldn’t do the permanent. That’s the beauty of the trial! Some people get an implant just over the occipital nerves without a trial and later find out it does not work.
The recovery is typical of any surgery. And, if you don’t have the migraine pain it’s all worth it. Just focus on the trial first and see if it works for you.
Also, I am not limited in any movements. I can do yoga or any other sports. I know there has been a gymnast that had it done. And, I have never noticed any leads slipping.
Good luck! I hope the trial works for you!!
How did you feel right after the actual surgery? Very sore or what? Thank you!
It’s surgery so you naturally have pain after any surgery. I didn’t have the migraine pain so it’s all worth it.
Katie,
I just had my permanent surgery done on December 31; I am still very sore. I have the leads on both sides of my head and across the back of my head. The leads are running from the middle of my neck to my right shoulder goes across my shoulder to the upper rights side of my inner arm on my chest. It is painful I will not lie. But I haven’t had a migraine since the permeant implant was done. I’m focusing on my recovery and stretching my neck and arm to keep range of motion good.
The incision on the back of my neck ,on my shoulder and on my chest hurt the worse and most uncomfortable. I feel a tightness to the back of my neck that is uncomfortable. All that being said everything seems to be healing fine so far.
Best of luck
My trial done on December 5 was a night mare I had an allergic reaction to the adhesive they used on my lead bandages. Other than that complication (no fault of anyone’s) I noticed I didn’t have a migraine or even headache during trial although the day the leads was removed I had one that put me down to 3 days. That was the moment I was sold. I would rather have the procedure than to suffer one more day with chronic migraines.
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.
I did the trial but had so much procedure pain in my temple area that I couldn’t tell if it was working there! Thinking about going through with the permanent anyway like you said a lot of people you know did. I was wondering what was the outcome for those people? Once the surgery pain went away was it different?
I cannot speak for most people, but I think there was minimal pain and recovery for those at Reed Migraine Center. I encourage you to reach out to them. Many are on Facebook on the Reed Migraine Center. Hope that helps.