Neurostimulator for migraines, Anyone?

I have been wanting to talk to anyone that has had this done or is in the process of getting it done. Or have you thought about it? How safe is it? How do I find someone in my area that does it? Anyone, anything, please.

Hi,

I have an implanted occipital nerve stimulator for migraines. It was originally implanted in 2OO4 at Jefferson in Philadelphia. It has had to be revised 3 times since- in 2OO5, 2OO7, and replaced in september 2O1O. The first surgery was at Jefferson, subsequent revisions in 2OO7, 2O1O by the same neurosurgeon were done in Colorado as he had relocated.

It has helped tremendously. For the first eight months, I went into remission. Now, the headaches respond to medication and I no longer have to take daily opiates, which was all that could be done without the stimulator.

I have a lot more information, but the head is really bad today and I can't finish this post with as much information as I would like to give you. (I hope this helps, even a little bit.} I promise I will write more later or feel free to PM me. I have written about it before if you want to do a search.




Pain free days,
sailingm

does this block the pain? i am also interested in this procedure.

ya, for people with chronic pain that does not really respond to meds, like a last resort thing.

Hi,

I had this device implanted years ago. I had 7 surgeries with this thing. It was done in Fredericksburg, VA. Mine was implanted in my forehead over both eyes, went down behind both ears, under my neck and connected to the battery which was implanted like a pace maker. The kind of battery I had was one that I could recharge myself, meaning it was one that was suppose to last for about 7 to 10 years.

I went through the trial phase first. They implant the wires for about two to three weeks. They do not anchor them inside your body they are hanging down the side of your face. You have the device that you carry around to turn on when you feel a migraine coming on and turn the device on to to see if it helps.

From there, if the device seems to be working, they then implant the whole thing. Mine worked for a little while. Then one of the wires started to erode and started forcing its way out of my head. So, I had to have another surgery to put in a new wire/lead. Now when I turned this device on, you could see my forehead moving depending on how high I had the device set and that was very uncomfortable. So, both wires are working now, and it worked a little better. Then the other wire stopped working, so they had to replace that wire. after that surgery, it was the same thing again, until both wires.

I went through this until I couldn't do it anymore and until the device stopped working again. I told them to take it all out. Then had that huge gaping hole in my chest where the battery was that had to be packed and cut twice and had to heal from inside out on it's own until it closed itself up. It was horrific. The worst part was, I was still on my meds the whole time. And my reason for doing this was to get off all meds.

I know some people have had luck with this, but also some have not. I do know that it is still in the clinical trial phase, or at least it was. That's why it's so hard to get insurances to pay for it.

Good luck to you if you decide to go this route. I don't want to scare you away from it. This was just my experience with it and I'm glad I gave it a try, but also glad that I had it taken out. Oh, and also I still have one of the anchors in my head that they could not get out when they did my last surgery because it was in too deep.

Hugs!!

Hi!
I had a really good experience with my occipital nerve stimulator, though I did choose to have it removed last year as the pain moved to an area in my head that the leads didn't reach.
My battery pack was implanted near my hip. Leads went from this to the middle of my back, where they tied additional leads to that that went up the back of my neck to the occipital region of my head.

I also had the trial, as mentioned above. Leading up to that, I went through several nerve blocks. Radiofrequency was the last step before actually entering the trial, as that was apparently a good indication of whether the stimulator would work.

I wouldn't say it took my pain away. It feels rather like a tens unit 'pinging' my head instead of the usual pain. Sometimes it was uncomfortable, other times it was so welcoming compared to the pain I was in.
I still was under pain management and narcotics whilst on the stimulator. I actually regret having had it removed, as it worked better for me than any other procedures.

I live in San Diego, and had the stimulator implanted down here.

PM me if you have any other questions!

T

I had a TENS unit for sciatic nerve. It has pads that stick to the skin. I tried it on my head for M twice. It hurt badly for two days even on low. But at least the pain was different.

Tanya - I'm gald you had a good experience with yours. Sometimes I wonder if it's where it is implanted. Everyone I have known has had it implanted in the occipital area. But, mine was not going to work there because that is not where my migraines begain.

It's great to know that there are some that have had great experience with then. I just wish that I was one of the,m. I'm not saying that I didn't have a few success, but for me, it was more trouble than it was worth.

Best of luck to those who are willing to go through the trial, then have it actually implanted if the insurance will go along withit. I would love to hear the success stories.

Don't get me wrong, if I knew that some improvements have been made and the device has been fine tuned, and I had insurance, it might possible I would go through it again. But, it would have to be after the clinical trials were over with.

Best of luck. Please keep us posted.

Tanya - please PM me and let me know your experiences when you get a chance or email me on FB. xoxo

HUGS!!

This must be the thread you're talking about, Sailing. I also found an entire facebook group of people with migraines who have or are going to have neuro-stimulator implants. It's pretty informative just reading people's different experiences on there too. I'm suprised at how many surgeries a lot of people seem to need afterwards, but perhaps people that don't have a problem don't ever think about it visit these groups to post anything. I'll have to ask my doctor how often this happens though. Good to know...

Hi,


Yes, there was another thread. I pointed it out because the head has been horrendous lately. I am a member of the facebook group as well.

Now that some of the meds have kicked in, let me tell you about my experience with the stimulator- the good and the bad- what it has helped with and what it hasn't.

As I said before, mine was originally implanted between phase II and III clinical trials in 2004. I experienced 8 glorious months of remission- I went from daily headaches to 1-3/week that responded to medications. The device was originally implanted at Jefferson University Hospital in Philadelphia. I had my first revision in 2005, after a lead broke, with subsequent revisions in 2007 and 2010.

Here is what mine stimulator does:
1. It allows medication to work. Before the stimulator, only very high doses of narcotics and some steroids would touch the pain, with the stimulator medications can be used to help break or lessen the headache. For example, the last time it broke, my pain dr had to put me on a high dose of morphine so I could function. When it works, I take less pain medication- currently on Tylenol 3 and Tramadol for pain.

2. It allows me to function. I don't think I could without it.

3. Mine is on constantly, I have about 3 or 4 programs and I switch them around. I also recharge every two weeks to ten days. I can tell when it is running low as my headache stops res

My implant is made by Medtronic. I am fortunate that my pain dr does some spinal cord stimulators and knows the rep. My pain dr refuses to touch my stimulator as it is out of his experience, but is supportive if needed. I have found the rep to be very helpful.

It doesn't take away all the pain completely, but it does help a great deal.

I think a great deal depends on the surgeon and on the lead placement. Mine are in the back of my head with wires connecting in the shoulder and a battery leading to my hip.

For the most part, it has been a positive thing for me.

Pain free says,
saailing

Thanks for posting your stories about the stimulator. I've had severe migraines for nearly 25 years and constant severe migraine for the past 3 years. I am in pain management, which helps a great deal. However, each day is a struggle to get through with this constant pain.

I've tried and failed hundreds of abortives, preventatives, DHE---you name it.

Just about the only thing that I have NOT tried is the electric stimulator. So sorry to hear how wrong it can go---that hole in the chest sounds like a nightmare. I'm really sorry that you had to go through that, on top of the constant migraine pain. Sorry to hear about the high number of surgeries that are sometimes required for this device.

Does insurance pay for the electric stimulator? A couple of years ago I saw a pain doctor who mentioned the stimulator, but it sounded like it would be a fairly high out-of-pocket cost, since the stimulator is still considered "experimental" by insurance plans. Thanks and good luck.

Brenda

I just had a trial done recently, without relief. My pain doctor could only get my insurance to approve it for "neck pain", using C1/C2 cervical epidural placement. No idea how other doctors get peripheral nerve stimulation for headache approved by insurance, as it isn't FDA approved (ex. occipital and/or supraorbital nerve placement).

Different placements and doctor expertise can definitely affect the outcome. My doctor wouldn't have wanted to try occipital, supraorbital, or temporal placement though, as he isn't convinced it would be any different than nerve blocks, which I failed. I'm not so sure though. I think nerve stimulation has a better success rate than most of the treatments we try, but it seems to be quick finicky, with a very high rate of repeat surgery. Best wishes.

Does anyone know of a doctor in the South Jersey/Philadelphia metro area that does the neurostimulator implant for migraines and if insurance will cover it? I have been suffering with almost constant migraines for a few year now. None of the prescription meds have helped at all, or the sumatriptan shots. Have been in the hospital several times over the last year, and all that does is make them less intense. Getting infusions now and they basically do the same thing.

This is very good information. I'm curious though if anyone considered nerve decompression surgery before trying the implant? Was there a reason you chose an implantable device which seems to require multiple surgical maintenance over a one time surgical procedure?

I haven't tried anything surgical yet, but my neurologist suggested that I look into this, as nothing he has tried has worked. He does not do this procedure, so I am looking for some information. Last time I had an MRI, I had no compressed nerves in my neck though. I also have MS, and my neurologist thinks my migraines stem from that.

lepoppet wrote:This is very good information. I'm curious though if anyone considered nerve decompression surgery before trying the implant? Was there a reason you chose an implantable device which seems to require multiple surgical maintenance over a one time surgical procedure?

I personally haven't pursued decompression surgery as there seems to be a greater risk of potentially even increasing pain, cost (travel plus I don't have good out of network coverage), and I'd like to see more data on it first.  Before the trial I hadn't made up my mind; even if I got more than 50% relief I wasn't sure if I'd want to go through with the permanent stim.

I didn't get any relief though (pain was actually worse by the stim at the locations they tried), so I didn't have to make that decision.  I knew I couldn't pass up the chance to have a stim trial when it was so easy for me (done by my pain doctor so no travelling, and no out of pocket cost; plus I got to sit at home for a week instead of going in to work, so besides the discomfort, it was fun).

Yes if you look at it as multiple surgeries vs. one time it seems silly.  However, its apparently quite common to need more than one decompression surgery.  Also, by the time someone getting a nerve stim now needs a battery replacement, the life should be expended quite a bit more.

Battery replacement isn't as major of a surgery as the initial placement (leads, including tunneling to reach the battery) or nerve decompression surgery too.  However, there is an almost 100% chance of revision surgery for nerve stim devices according to a lot of the data.  That has been drastically improving though, and has a lot to do with doctor selection.  Best wishes.