Neurostimulation for Occipital Headaches

[staypoz]

brp51d,

I know that neurostimulation has been around a long time for back pain, but its use is still fairly new for head pain.  My doctor didn't think I would have any problems getting my insurance company to pay for it, but I wondered if you have encountered any problems with your insurer?

staypoz

[Jim Scott]

Just throwing this in as a point of information and for what it's worth: My wife suffers from spine-related leg pains and the doctors said more surgery wouldn't help.  She went through the nerve blocks and other therapies and the pain, often near-debilitating, persisted.  She flatly refused to take narcotic medicines because, as she put it, "I don't want to spend my life in a fog".  I agreed. 

Her pain management doctor suggested an implanted nurostimulator to counteract the leg pain, which was nerve-related.   She opted for the device.  It was surgically installed by the pain management doctor in the hospital, as an outpatient.  She was given a programmer that she uses to adjust the stimulation as needed.  The battery is supposed to last about 2 years, then a new stimulator will have to be implanted (just above the buttocks) .  Although the operation is relatively minor she was given an anesthetic and was unconscious during the 1 hour surgery.  The stimulator works well and her pain has been reduced approximately 70%, for which she is grateful.  The MedTronics rep was extremely helpful and solicitous and is always available via her cell phone.  Medicare and Blue Cross paid for the device and the surgery, which was billed at approximately $30,000. total although Medicare and BC paid about 25% of that.

Here is a link to the Medtronic web page and a photo of the 'Patient Programmer' that she uses to adjust the device's nerve stimulation.  http://www.medtronic.com/your-health/chronic-back-and-leg-pain/device/neurostimulators/our-neurostimulators-for-pain/mystim-programmer/index.htm

Of course, I have no idea whether this device (or one like it) will be efficacious in reducing headache pain, but the device has worked well for my wife, so far.   

Jim

[Mei Mei]

Thank you for this story, Jim.  Like the DVD the doctor gave me, this link says that the device is intended for trunk and leg pain and not targeted for our headaches:

http://www.medtronic.com/your-health/chronic-back-and-leg-pain/device/neurostimulators/questions-answers/index.htm

I'm wondering if it should be used for our occpipital headaches, if the supplier says upfront that it is not intended for this.

Mei Mei

[brp51d]

My insurance company approved the procedure within about three weeks. I believe siutability is determined based on various factors includind attempts to treat with medication.Although, these devices have been used promarily for back pain, experimentation to use neurostimulators for severe headache pain [usually migrain, cluster or similar resulting from trauma or surgery] for about six years. The sample of cases is still comparatively small buut the success rate is at about 70%.

[brp51d]

I read the medtronics link. The ns implanted to treat back pain will not help the other listed sources of pain. The device used to treat headache pain is implanted in the chest with leeds running to the occipital nerves, not the spine or nerves connected to the spine. The very helpful medtronics rep explained all of this to me in detail.

[staypoz]

Thanks for all the helpful information, brp51d.  I have read most of the studies and to the extent I can understand them, am encouraged that another option may be available to those of us with with post-op headaches.  I hope the "permanent" implant is as successful as the trial one was.  Keep us posted.

staypoz 

[Mei Mei]

Dear brp51d,
I also am encouraged by your results.   I had a very upsetting headache last night and am having coincidentally an appointment with my neurologist this Thursday.   I wanted to ask you if your headaches are constant and occur on a daily and nightly basis.   Mine usually occur at night and sometimes in the daytime.   I don't know if this is enough to warrant having a Neurostimulator implanted.   I've already had several nerve blocks that do nothing to prevent the headaches and have yet to find someone to give me Botox so don't know if that will work for me.

How do you know it is right for you?   Is it continuous pain?

Mei Mei

[Larry]

Interesting thread.

I like the idea of the stimulus but not for having surgery again. The fact that its an implant - would that affect having future MRI's.


laz

[leapyrtwins]

Good question, Laz.

I read the info on the link, but it didn't say what the stimulus is made out of.

If it's titanium, like the BAHA implant, MRIs aren't an issue.  But if it's made out of something else, they may be.

Jan

[staypoz]

From everything I have read, MRIs are out if you have one of these implants.

staypoz

[Larry]

I'd think really hard about this procedure if MRI's are out of the question.

Whilst I'm dreading my next MRI (not sure on what is still there) it is still the best measurement tool we have.

A real dilemna this one.


Laz

[staypoz]

brp51d,
Have you had the permanent implant done yet?  How are things going?  On Friday, I am meeting with my doc and the company representative to talk about the procedure and look at the device.  If you are around, please let us know how you are progressing and I'll post after my appointment on Friday. 

staypoz 

[dally1932]

I considered the neuromodular system about 16 months ago. This was the 4th pain managemnt doctor I had been to in 7 years. He gave me two series of 4 nerve block injections over a two week period and indicated if the last series didn't work he wanted me to try this system which threaded several wires from my lower back up through my spinal column with leeds into my cervical vertbrae. The power pack would be implanted above my waist with a charger that I would place over it to charge the battery. When I questioned them intensley about this procedure they had me contact a patient advocate who worked for the company producing the system. I asked her what the track record was for post operative AN pain. She told me that it wasn't FDA approved for head pain however was approved for trunk and limb pain. I weighed the possible side effects in the phamplet and DVD and decided to hold off until there was more of a track record. It may work, I just wasn't prepared to go through what I felt would be invasive surgery, at least yet. Good luck in overcoming your pain.

[Captain Deb]

I saw a news article on one of these stimulators used for migraine on CNN or ABC or something a few years ago and the woman, who had had migraines all her life, had a great deal of relief. Personally, I would not go to this length without trying Botox first--and I am not talking about Botox once or twice, but at least three to 4 times of at least a dozen to 16 injections.  I had my third round, three months apart-- about a month ago and I have not been this headache-free since I woke up from surgery 7 1/2 years ago.  I seem to even have less headaches than I did BEFORE surgery.  Not to say that I am entirely headache-free.  I still get an occasional occipital headache which I can stop in a few hours with 2 Fioricet, an ice pack, and rest. I cannot take NSAIDS like ibuprophen or aleve at all any more due to tummy issues, hence the Fioricet, which is Tylenol with a mild dose of valium-like stuff in it.  Nothing like the rolling-around-crying holding my head and wanting to DIE ones I was getting before, and I had about a hundred or so of those in the past 7 1/2 years.  I spent tens of thousands of $ on expensive meds--injectable Imitrex, Topamax, even with insurance.

The funny thing is that Botox is what my neurologist mentioned to me on my second visit to him, but my insurance co refused to pay for it.  It was $1200 a visit. But that was almost 8 years ago and with new information and studies some insurance cos. may have changed their tune.  When I got approved for disability, I got Medicare with it and as soon as I found out that Medicare would pay for it, I scheduled the injections.

Sorry to hijack this thread, but I think that this treatment should be tried before you go planting weird things in your insides! I'm copying this post to the Botox thread as well.

Happy International Talk Like a Pirate Day to you wicked Wenches and swashbucklin' scallywags!

Capt Deb

[cin605]

Good to know Medicare covers Botox.I will be using medicare come Dec