Nerve Stimulator

I had an appointment with a pain medicine specialist yesterday. He thinks I am a good candidate for a peripheral nerve stimulator. He said about 80% of the migraine and headache patients get relief. If/when my insurance approves it, the doctor will install the leads on my face in the area of the nerve above my left eye and near the nerve below my left eye - where my daily pain always exists. The leads will attach to an electrical impulse generator that I will wear on a belt. I'll wear that for about a week. If I get relief from that - then I will have surgery to install the equipment inside my body.

The doc said that the brain can only process so much stimulus at once. The electricity overrides the pain signal and retrains the brain. He said I may even get relief from non-pain symptoms.

Does anyone else have any experience with nerve stimulators? Can it really relieve the non-pain symptoms such as weakness, shakiness, brain fog, light sensitivity, food cravings, etc?

Hi,

I have an occipital nerve stimulator. It was originally implanted at Jefferson University in 2004. I went through the same trial you are describing before the permanent device was implanted. The device works by sending a false signal to the nerve to block the pain signal.

In my case, the leads are in the back of my head. Both leads start near the crown of my head and go down. The leads meet in the shoulder and then go down to a battery in my hip. As I understand it, yours would be trigeminal, and do the same thing to that nerve, which is located in the front of the head.

The stimulator has been a godsend for me. For the first eight months, I went into a sort of remission- where the headaches were not constant- I would get 2-3 a week, but not the chronic daily ones I got before the stimulator. I have had to have some leads and batteries replaced along the way- in 2005, 2007, and 2010. Even though the headaches did become chronic again- the biggest difference is that the headaches will respond to medication. They would not in the past. My quality of life is infinitely better with it.

I will be happy to give more information if you would like.

Pain free days,
sailingm

Thanks for the reply. Do you find that it only relieves the pain or does it relieve other symptoms as well? Also, has anyone told why the pain came back? You say at least it responds to medication now. So are these medications ones you tried before the stimulator - but did not work then? Just wondering if meds I failed before would be effective after the stimulator.

I appreciate you sharing your experience.

I am pursuing the device also. I had my phyc evaluation today, and will wait to see if ins. will pay.

Then I will have 4 lines put in, 2 on my forehead, and 2 on the back of my head. I will wear these temporary ones for about a week, if it works, I will then have them surgically implanted.

I have talked to a fellow local who had his done in Jan. and has had only one migraine since. And said all he had to do was turn the device up and go to bed. When he woke in the morning it was gone. He had headpain everyday and had to quit his job. He is now waiting for his dr. to release him to go back to work. Says it has changed his life.

https://www.youtube.com/watch?v=Fc-CmbCETY0&feature=plcp Check out this video. This woman had it done 3 weeks ago. She has before and after footage that explaines it really well. She lives in Florida, and had hers done in Texas.

The device I am looking at is manufactured by St.Judes. They have a website where you can sign up for a brochure and dvd, and list of doctors in your area who are qualified to do the procedure.

Hope this helps!

Here is a good article from the Minneapolis Star Tribune:

http://www.startribune.com/lifestyle/health/174999781.html?refer=y

Thanks, was a very good article!

Sherri -

Where is your pain located? I'm asking because I'm curious about what makes the doctors decide to do the occipital or the trigeminal or both.

The doctor I saw to talk about the trial uses the St. Jude device too. He sent me home with a St. Jude's dvd to watch - though it is for back pain - but he said it is the same concept. He said if my insurance approves of it and I do well on the trial then he would send me to Dr. Reed in Dallas for the implantation surgery.

I will make some time to watch that video you provided a link to soon. Thanks.

My pain varies, forehead, lower back of my head, and like a headband across my head, sometimes my temples. I don't care, I'm getting it if they will do it... I have tried nerve blocks, nerve ablations, botox, and all sorts of preventatives, nothing works! I can't live like this anymore. I am willing to take a chance no matter the risk at this point. I don't have a life.

Had to quit my job last year, a job I loved, Now I am on disability, don't get me wrong I am very grateful for that income, but I want and need to be productive,,,,, Hate doing nothing all the time, I have trouble keeping up with my house work at this point and even cooking dinner.... sucks to be us!

Interesting topic. I have been pursuing a nerve stim trial too, for awhile now...it was quite a battle to find someone that was willing to do it locally (although I think Dr. Reed is one of the best, it wasn't feasible to consider between the travel, time off work, and no out of network coverage), not require me to get off pain meds, have experience with the procedure for headache, and actually be willing. I'm now going down the path with the easiest option (the pain specialist I see for my pain meds), although he doesn't have much headache experience. I didn't respond to occipital, supraorbital, or temporal nerve blocks. The doctor thinks that because of this getting insurance approval will be tough (although current thought is that nerve block response isn't indicative of nerve stim response).

I know some doctors have more experience with insurance though (seems like the Reed center doesn't have much problem, although they are out of network for many folks). I believe we'd do both supraorbital and temporal leads for me as my pain seems to be between those areas (although my doctor didn't think doing those nerve blocks at the same time was worthwhile?). Seems like insurance is the biggest hurdle though. This seems to be one of the best bets for those of us with intractable chronic headache, however there are some folks who don't respond to it, can't duplicate the results they got from their trial with the permanent, or have complications (lead migration, infection, etc).

Seems like doctor experience is quite important to mitigate these. From what I understand Dr. Reed seems to do the same lead placement for all headaches (both front & back), where other doctors may only do one or the other or both depending on pain location. There is also discussion on the best battery placement. I already had the psych exam, but I'm trying to convince my doctor to submit the darn prior auth...he seems convinced it'll get denied, so its a why take the time mentality? To me, I think so what...at least then I can work with appeals. I had wanted to fit in the trial during the holidays (and I'm expecting my insurance coverage to only worsen over time).

St. Jude and Medtronics are the two big manufacturers of the batteries they can use. Its most often used in spinal cord stim. Lots of info online with these, but less specific to headaches. I think one of the biggest things I'd like to see is some data specific to different headache conditions. I think the very minimal amount of data out there right now seems more centered on migraines, and with my contact with people on some message boards, it seems like other more stubborn conditions such as NDPH may be less likely to respond. Still, nothing else has worked, so as long as the risk is low and it won't bankrupt me, I'd do it. Good luck to everyone! Best wishes.

Thanks Kate,

Sounds like you did your homework. I hope we get it done before the holidays too. Althought it looks like about a month full recovery, to be migraine free would be nothing short of a miracle! I'm ready,,,,

I called my dr.yesterday and asked what the next step would be and that I was desperate. For them to please call me back... still waiting. Guess I waited this long,, I can be patient a little longer...

Good luck, and blessings to you! Hope you get it before the holidays also!

Hi All,

I have been meaning to jump back hon this thread since I do have an implanted stimulator, but the head and fainting haven't been cooperative. I just thought I'd share a little more of my experience.

Anyway, for eight months after the stimulator was implanted, I went into a kind of remission. I still had migraines, but they responded to medication and I would only have 2-3 a week, rather than 24/7 pain. After I had the first lead replacement in 2005, the headache became again. However, they did respond to medication- even medications that did nothing for me before the stimulator. This has greatly increased my quality of life. Now, IV Depakan will break or at least greatly reduce the migraine. Before the device, it did nothing. I also respond better to some preventatives and definitely reduce the amount of pain medication I needed.

I am not sure why some doctors use the occipital and others the trigeminal- I guess it depends on where pain is located and what works for you. I had a very positive response to radiofrequency and occipital blocks, so mine was placed in that location. At that time, the dctors at Jefferson were doing a trial on occipital stimulators. Though I chose not to be part of the trial (I believe it was done between Phase II and Phase III clinical trials), I chose to go ahead and do it. I am very glad I did.

As others have said, Insurance is the biggest hurdle. I have had three revisions to the stimulator- the original implant was completely covered by insurance, so was the first replacement. The last two have not been covered by insurance, but my n-surg worked with me and we got it done. My dr. says that he and others have been trying to get approval from fda and insurance for this to be used as a migraine treatment for years. It is a good device, it works for many and in the long run, it is probably cheaper than the cost of migraine meds and lost work due to migraine. I really wish it was avaliable to more people.

I did not have to get off any pain meds before the device was implanted. I just didn't need them anymore.

It is hard to find a doctor who has enough experience to do this. But I say go for it right now. I hope you are able to get the trial done soon.

If you like, I'll be happy to write more or give you the name of my dr in a PM.

Pain free days,
sailing

Thank you, all of you, for sharing your experiences and other information. When and if I ever get the trial stimulator - I'll let you know how it goes.

I just talked to the Rep. from St. Judes today. She said my paper work just came across her desk, and they never have trouble with my insurance, so I should be hearing from the dr. office to schedule the trial in about a week.

The sooner the better! Especially after the last 2 days I just had.. I seriously feel like I just want to die and my life is worthless!

I will keep you all posted...

I do hope you get some relief! Good luck.

Update: Yay I got word today my doctor will finally submit the pre auth. He spoke with his St. Jude's rep and they decided to change the approach and do an epidural placement for me, at C2/C3, with 4 leads / 16 electrodes. Then a couple days into the trial, if needed, add front leads. I need to get some details. He may have been meaning to use two leads for the trial so he'd have two left to add to the front if needed (I believe the battery only handles 4), but 4 for the surgery if all goes well.

I'm quite skeptical of this placement due to my headache location (all frontal/temple), but will read up more. I was unpleased when he mentioned this placement had an advantage of also helping upper extremity pain (I have fibro), as that is not of concern to me in relation to treating the head pain. He said the main reason to do this is insurance...the C2/C3 placement is FDA approved for neck pain, so it'll supposedly be way easy to get approved compared to trying to get leads for temporal/supraorbital approved.

But he was confident that this was actually more likely to help my pain than doing the front leads by themselves. I assume he'd want to only add the front leads later so we'd know what helped, since I don't think the trial device can turn on/off certain leads like they'd have for the patient control unit for the permanent. Not sure how insurance billing would work if I ended up needing those front ones...maybe they would just bill it as 4 leads as C2/C3.

He said my insurance typically takes 2-3 weeks to respond, so it could be doable to do this year. Thankfully I shouldn't have any out of pocket cost for the trial, and only 20% of the battery cost for the surgery. I'm trying to minimize time off work (I don't want to go in with wires hanging out of my head/neck), so want to fit it in over the holidays somehow.

He wants to do a week long trial and he does it in office (no sedation). He says there shouldn't much discomfort from the trial (I was concerned that a few days wouldn't be enough to decide to add front leads if I was having procedural pain, as I seem to be prone to having more issues with procedures).

Not sure how quickly he does the permanent placement after the trial. I assume not quite immediately as he mentions removing the leads (I've heard of some docs placing permanent leads and then taking the patient immediately to surgery after the trial just to implant the battery). Probably as soon as we could get it scheduled and approved again by the insurance. I haven't got much into the surgery specifics with him as I'm quite doubtful of this working to be honest, and want to take it one thing at a time. I've been exploring this for over a year now I think. Best wishes.

Congratulations. I'd like to know how it goes for you.

I submitted for approval by my insurance company, but was turned down. Highmark Blue Shield didn't find it "medically neccesary." I'm also diabetic and the constant headaches make it extremely hard to manage diabetes. I forget if I took my insulin, take it twice, eat and throw up, etc. But they don't care. It's hard to watch all their stupid commercials around here, talking about how wonderful and caring they are when I have to live with it. I'm in the process of trying to figure out what I can do. Congratulations to those of you who are approved! Some insurance companies care, but not Highmark.

If you go on facebook and search on "occiptal nerve stimulator" you will find a facebook page that has tons of information. At the top there are links and you can do searches on topics. The only problem with the page is that people go on every time they first come on and want everyone to tell all their experiences once again instead of reading through the history. Also, people post a lot more than just about the ons, such as "I have a bad headache" so it has turned into a general migraine page also. But it still has lots of information, pictures of scars, stories of how it goes with the surgery, etc. It's very useful overall.

Good luck with your surgery! It has a very good track record.
-Cathy

Wow Cathy, that's to bad. I wish you could have gotten approved. I also have Highmark, must be a different plan, although I haven't been approved yet, but the girl from St.Judes said they very seldom have trouble with the Highmark Blue Cross/Blue Sheild. Now you got me wondering. She thought I should hear something this week. We'll see. And I'll keep you posted.

Thanks for the information....

Sherri B!

Cathy,

Is there a process in place to make an appeal?

Laura

Cathy, I feel your pain with Highmark. I have shared that pain. If you do an appeal, you may lose. And with our plan, there was only one appeal with them.

I was so determined to get a certain treatment for my daughter (not a stimulator), that I took her to the one doctor who I believed had enough clout to fight them on it. And I prevailed.

After they denied his request for the treatment, he did a "peer to peer" phone call to Highmark. Doctor to doctor. He probably got the denial reversed in about thirty seconds (with his clout). My daughter got the treatment, and it was covered 100% by Highmark. But I had to take her to PA to do this treatment. I would have never gotten them to cover it in MN.

Cheryl

Sherri - My card just says Highmark Blue Shield. Maybe there is a different company that is Highmark Blue Cross/Blue Shield. Since we are both in PA, that's possible because I know there was a split. I may try a different doctor. Sometimes it will go through for one but not another.

Laura - If you go to the facebook page, they have tons of links, information and sample documents on how to appeal. Some of the people posted their actual appeals. It's really a great resource. You have to request to be one, but I think it's just to keep spammers out. They let me on within hours.

Good luck!

Cheryl - Thanks for the advice. I'll have to see if I can get somewhere. I was going through Reed Migraine Center and they were going to start the appeal process for me. I'll have to see how it goes. In the meantime, I've been doing myofascial release and getting some results through that so it's not as intense as it used to be. That's always good. But so many times something works for a while and then stops helping. I'm hoping I keep improving.

Just made it through the hurricane with my head intact so that's good. But I don't react as much to the barometer as I do muscle problems. I had a headache when it was moving in, but once the bad part started it let up. Go figure!

As far as I know, the reason they will say its not medically necessary / experimental is because its not FDA approved for headache, etc. It is FDA approved for neck/back pain, which is what most docs seem to have success with getting approval for. The Reed center has a lot of experience with this since this is a huge part of their practice (most other doctors, even if they do stims nearly full time, only have a small fraction for headache).

So, I am not aware of any better doctor option. I'd love to have the option to go there...but currently I have no out of network coverage, nor do I want to deal with the multiple trips from Seattle to Dallas, and increased cost and time off work. I have heard of patients having to resort to all stages of appeals though. I believe the Reed center will do one appeal on your behalf. Then St. Jude's may do one.

After that is up to you (which may be even better as you can write a statement from the personal side, and also add up how much it will save them vs. your typical medical bills). They often don't offer up how to appeal...you will have to specifically ask how (they don't make it easy). The issue with it being approved for the neck leads can be billing for the front leads (for those who also need supraorbital or temporal leads in addition to occipital). Not sure how they do that.

My doctor is billing mine for neck pain upon guidance from a St. Jude's rep, who said they wouldn't approve for what he wanted to do, especially since I didn't respond to nerve blocks (supraorbital, temporal, and occipital). He wants to initially only trial the back leads, then see if we need the front ones. I'll post back if I get more info on how that will work.

There are often many many version of plans under the same insurer...depending on what options the employer/etc selects. Often there are exclusions for experimental coverage, and then sometimes they go down into specific procedure codes which are excluded. It may get to a point where you want to involve the HR department (assuming this is an employer-provided plan), who can do an appeals of sorts, or sometimes even negotiate exceptions. Peer to peer appeals are a very good idea, but I don't hear of them being used much. I assume insurers aren't so keen on it lol. Good luck! Best wishes.

What is a "peer to peer" appeal?

Anna's mom talked about it...from what I understand, a peer to peer appeal is when your doctor actually talks to someone from the insurance department, instead of just writing letters back and forth.