Tuesday, September 20, 2016

We've Joined Google+

The success of the Facebook group, Occipital and Peripheral Nerve Stimulation, has been great, with a current membership of 1700+. That's way beyond what I ever expected. While I expect that to remain the most popular social media platform, I've also created a Google+ community for those who prefer the Google+ platform or don't want to join Facebook. We'll see how it goes. If it isn't popular, I'll probably shut it down in less thing to keep up with.

So join me at the new Occipital and Peripheral Nerve Stimulation Google+ Community! (Clicking that name will take you there.)

Friday, January 31, 2014

4+ Years With My Peripheral Nerve Stimulator

My stimulator is great. I feel bad that I don't post much anymore, but there's no need to rehash subjects on which I've already written, continuing to say "I'm doing great." I really have no complaints and I forget I have it most of the time, to be honest!

That being said, I figure I might as well give an update as I've now had this thing for over 4 1/2 years.

If I had to give my stim a number, I'd say it has reduced my pain by 80%. I still have a baseline daily pain level of a 2 or 3, but that's completely acceptable. It's small enough that it doesn't slow me down and I can ignore and/or forget about it. Sometimes, my pain is actually gone entirely and that is an amazing thing.

Was the stim worth it? ABSOLUTELY.  My only regret is that I didn't get it sooner!  If I had to go through it all again, I wouldn't change anything.  This has by far been the most successful treatment I've ever tried my pain and it is an overwhelming success.

I'm no longer on any daily preventative medications for headaches.  No more heavy neurological drugs that have terrible side effects and make me feel like a zombie.  No more worrying about if/when my liver and kidneys will be affected. I do still have rescue meds (Zomig and Cambia) for days when the stim doesn't quite cut it but those days are much less often than they were before the stim, and their severity is greatly reduced. I can't tell you the last time I had a headache bad enough to make me vomit or send me to the ER.

Since my leads are fully scarred in, I really do not have any restrictions on my activities.  I've resumed my favorite activities including horseback riding, skiing, and swimming.  I also get weekly chiropractic adjustments and massages.  However, in the spirit of honesty, my doctor does not like that I get adjustments.  She does not recommend it to stim patients and I'm aware of this.  I really shopped around for a chiropractor before choosing one, which was very important. The one I chose is excellent and I trust her absolutely.  That cannot be said of all chiropractors I've ever been to though so if you do choose to risk chiropractic adjustment with a stim, go to the best, not the most convenient or the one you've known the longest.  Personally, the relief I get from the chiropractor (for occipital and neck issues) is worth the risk.  But that's a decision everyone has to make for themselves, of course.

Besides the one optional revision I had several months after the initial implantation, I've had no need for any revision.  All my wires and anchors have stayed in place, which I attribute to my wonderful surgeon but also to giving things a good long time to heal. At this rate, I think the next surgery I'll have for the stim will be to replace its battery, and thankfully that's still quite a few years down the road (knock on wood).

I've not had a lot of need for reprogramming either.  I think I've been reprogrammed three times ever, and I've always waited until I go to Chicago to have it done there.  I've never had to see my rep in Wyoming. To be fair, I'm not sure this is actually normal.  Most people need quite a bit of reprogramming in order to get the most out of their stim. But most of that programming will probably be within the first year or two.  Once you get it set right, you should be able just to leave it alone.

If you have any other questions, drop me an email or a comment on this post and I'm happy to answer.  I think this post covers most of the most frequently asked questions.

I may not update this blog much, but I'm on the PNS/ONS Facebook group daily.  We have over 600 members (!) from around the world.  It has become an amazing resource.  Plus then you can hear experiences and opinions other than mine! If you or someone you know is considering getting a nerve stimulator to treat headaches, I highly suggest you join the group.  It's much more active and comprehensive than this blog. But as always, I'm available via email.  I may not post much on this blog anymore but I still check the email address attached to it regularly.

Friday, August 30, 2013

MRI Compatibility?

I've heard rumors of an MRI compatible battery floating around for awhile now but have not met anyone that has one or been offered one. I was visiting with my Medtronic rep today and decided to ask him about it.  It turns out there are MRI compatible batteries...but they are more for pacemakers or pain pumps. I can get an MRI compatible battery but it won't help because the leads are not MRI compatible. If I were to need an MRI, they'd have to take the entire system out. And there are currently no MRI compatible leads on the market or even in development. This was excellent clarification for me so that I can set the record straight and move past the idea of getting an MRI compatible system.

Tuesday, July 2, 2013

What's in a Name?

As occipital and peripheral nerve stimulation for headaches become more popular, doctors and companies are rushing to put their name on the process.  This can be a bit confusing as it seems some procedures now have several different names.

Technically, an occipital nerve stimulator covers only the occipital nerve.  A peripheral nerve stimulator covers any nerves, particularly smaller unnamed branches.  But doctors are finding that a combination of these seems to be the most successful, placing leads on both the occipital nerve (at the base of the skull) and on the supraorbital nerve (across the forehead).  This particular placement has been coined as the "Reed Procedure," the "Transforma Procedure," and the "Omega Procedure." They are all essentially the same thing.

Hopefully one day a single name will stick and be used to avoid confusion but for now be aware that there are several names floating around which all mean the same thing. 

Tuesday, February 19, 2013

Updated Doctors List

I have finally updated the list of doctors that do ONS.  I've made a "page" out of it.  You can find it by clicking on the page title "List of Doctors" just under the blog title and description.  The list has gotten long (which is a good thing!) so I've divided it up into regions of the United States, as well as a section for Canada and "other," which currently only includes Australia.  If you would  like your doctor added to the list, please email me at or leave a comment for this post.  I spent all day combing my emails and other resources but I'm sure I've missed a few here or there.

I've also updated the links section with a few things people might find helpful.

I'm posting the updated list of doctors below, just because I thought it might be helpful.

Thursday, January 31, 2013

Occipital Nerve Stimulation versus Peripheral Nerve Stimulation

I apologize for not posting on this blog much anymore.  I have been spending most of my time on the Occipital and Peripheral Nerve Stimulation group on Facebook.  We now have almost 250 members, most of them very active and willing to help others.  To me that is a more valuable resource since there are multiple opinions and experiences provided instead of my one-sided story. It is a closed group so any Facebook friends outside the group cannot see what you post (your medical issues are kept private) and the group itself has been amazingly helpful and supportive.

However, I think what I have learned in the past year or so is important to post here for those who stumble across this blog looking for information.  I have always called my stimulator an occipital nerve stimulator.  Turns out, it is really a peripheral nerve stimulator.  Although the terms are often used interchangeably, when it comes to surgery, there is a difference. The difference is in which nerves the leads of the stimulator are placed on.  Everything else is basically the same...the device, choice of battery placement, how the leads are put in etc.

Occipital Nerve Stimulation (ONS):
This is more common.   The surgeon places the leads on the main branch of the occipital nerve, which is located in your neck, around your C1-C2.  This is where the incision will be made.  Also, if necessary, many doctors are finding it more effective to put wires in the front of a patient's head as well, usually on the supraorbital nerve.  This, however, means they often make an incision on your face, usually by the temple.  The idea is that with leads in both the front and back, the whole head will be covered.  For some people this is the case and is great.  For others (like myself), peripheral nerve stimulation is a better option.

Peripheral Nerve Stimulation (PNS):
This is a less common option.  There are fewer surgeons who do this type of surgery because it's tougher.  PNS involves placing the leads on any peripheral nerve...generally any nerve at all that is giving you pain.  This could include the trigeminal, auriculotemporal, or any branch of the occipital nerve, for example.  Incisions are made close to the nerve being stimulated, wherever that may be. Surgeries like this are harder because there are many blood vessels in the head and not a lot of room to work.  So just because a surgeon says he does occipital nerve stimulation does not mean he does peripheral nerve stimulation. I just want to be clear about that.

Image from
This is by no means proved by any research and is nothing other than my opinion, but from talking to people that have many kinds of pain and have had many different surgeries in many different states and countries, I'm comfortable saying that peripheral nerve stimulation seems to be more successful in managing pain than occipital nerve stimulation...if, of course, your pain is not on your occipital nerve.  It really only makes sense.  If you have pain from your trigeminal nerve, put the lead on the trigeminal nerve.

I thought this was a topic worth clarifying for anyone researching surgeons for one of these stimulators.  That was you can use the proper terminology to make sure you and your doctor are on the same page.  If your surgeon only does ONS but you think you'd be better off with PNS, find another surgeon. People seem to have a loyalty to their doctor(s), often based on nothing substantial, and you have to give that up to do what is best for yourself.  If you're going to get something implanted in your body, you might as well get one that does you the most good.

Thursday, January 19, 2012

Tips for insurance appeals

I want to share some tips for insurance appeals. I'm not sure if they all help but I'm sure they can't hurt.

First of all, I don't know if this is true, but it seemed true for me. I was told that an appeal coming from a patient is often more successful than a doctor appeal. Your doctor should be able to appeal 3 times, and if all of those are denied, it becomes the patient's turn to appeal. What I did with mine was just overwhelm them with info. I wrote like a 6 page letter giving them a history of my headaches for the last 15 years, telling them all the things I tried,how it had affected my life, and why the stimulator was the last option. I wrote it as an essay so maybe it would make them think of me as a person instead of a number.

I also included references to current research articles. I suggest using Google Scholar to look for professional articles. I have a list of them that I'd be happy to share but I'm sure there are some more up-to-date articles available as well.

I also did a simple cost-benefit workup. I'm not much with numbers but I basically added up my costs for the past year, and estimated how much of that could be cut out if the stimulator works (75% of prescriptions, ER visits, urgent care visits, etc.) and compared it to the stimulator to show that them paying for the surgery would be to their financial benefit within as short as a year.

And lastly, I'm also it's told the diagnosis and procedure codes are important. For example, if your diagnosis is coded as "migraine" it won't be as successful as if it's coded as something more specific like "occipital neuralgia." I already posted the codes that were successful for me on here somewhere but if you can't find them, I would be happy to post them again.

Those are my tips. I hope they help. If anyone has anything to add, please do!
 Also, as previously posted, we've got a great group going regarding occipital nerve stimulation on Facebook so please join us!