Migraine

There has been so much talk about Neurostimulator for cronic migraine treatment. Can you please give me some information. Dose the NHF have a oppinion, or made a statement about it. I kno wthe have said that they do not recomend nerve decompresion. Just wondering what you guys know. From what I see and read the sucess rates are steller! Don't want to go crazy and get my hopes up, I trust you guys to give a balanced and honest oppinion.
Thanks

Hi Cris,

I'm not sure what the NHF has to say about the recent influx of information about this procedure.

This procedure is not FDA approved for chronic, or any type of Migraine. But, if you are TOTALLY out of options, it may be something to look into. The procedure is not yet perfected, but is getting better.


Teri is going to be in soon to give her opinion.

If you haven't already, search YouTube for the videos a few patients getting the Transforma neurostmulator (or "stim", as they often call it) have done recently. Apparently, the process is to have a trial time with leads surgically placed, but the device being on the outside. If it helps you, then you have to fight your insurance for coverage, which some have won. Then, you have the full surgery with everything but the remote inside of you.

There is also an external neurostimulator in the UK (I think it is) that looks interesting, but it is not approved for use in the States. There is also an external magnetic-field device waiting for FDA approval.

A wonderfull person from a FB migraine group sent this my way. As with anything I belive you have to make the choice thats right for you.
http://www.americanheadachesoc..._migraine_treatment/

Cris,

I have a device that's called an occipital nerve stimuator that was surgically implanted for me 3 years or so ago. I received it as part of a clinical trial--as Nancy said, it's not FDA approved yet and I couldn't possibly afford to pay for this surgery out of pocket.

For me, it's brought about a 50% reduction in my constant, daily pain.

It's been a good move for me, but I can't speak for the other patients out there!

Thanks Jamie, The newer procedures have bothe the ocipital and super orbital sits covered . They say thats supposed to give full coverage to the entire head. I assume as time go's on they will be able to focas more spasificly on the diffrent nervs to see if that givs better reslult. WOW 50% thats great. Its nice to hear how it is working over time. At this point I dont even want my old life back. It would just be great to beable to shower daily, cook dinner most night and play with my kids. Hey having a good sex life again sure would be nice. I have not had morning sex sence I went cronic. I have to get up eat something take my meds wait for them to kick in then start the party and hope I can make it through with out total mission failure....sigh. I am not expecting miracles. Just some stability would be great.

Hi, everyone. Sorry I didn't get in here sooner to comment.

Chris, thanks for linking to the AHS statement. That's one thing I wanted to be sure y'all had.

I'm not an expert on these by any means, but I'll share the info I have...

There are several different types at this point. Some are still in clinical trials, some aren't. NONE are FDA approved yet. This means that many insurance companies won't cover them as they deem them to still be "experimental." Sometimes, insurance company appeals are successful, sometimes not. If it was a medication without FDA approval, I could give you some advice on how to fight the insurance companies. Since it's a device, we're pretty much stuck if they won't cover them.

From what I've heard from people who have them, when there are problems, the main problem is lead migraine - the leads slipping out of place. When this happens, the stimulator no longer works.

Hi again, Cris (and my other pals),

I wanted to add some thoughts:

I have the possibility of having frontal leads placed in the future--long story, but, as Teri said, it is currently not FDA approved and likely will not be covered by my insurance. For me, it would involve implanting an entire second battery pack and new wires.

The surgeon who did my initial implant has advised me to wait on the frontal leads til he and his colleagues get better at surgically placing them. He said the leads in the forehead/temple tend to break through the skin. (Eek! ) I followed his advice when he placed the occipital implant for me--I waited a bit to enter into the clinical trial, til the doctors new best how to place and anchor the leads to prevent the "lead migration/slipping" that Teri described.

I think it'll be a while til things are approved. And you'll want to consult with a surgeon who has done lots of them if you're considering the procedure at all...

Remember that if something goes wrong with the implant, it can only be corrected through surgery! That's a big commitment--I had to have a surgery recently to replace my battery. Not fun to go through that!

As with any surgical option, anyone considering these implants should definitely take the decision quite seriously. It's a surgery, and there are risks involved in undertaking the procedure. And certainly, it's important to wait for FDA approval to be sure it looks like a safe alternative in the long run.