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.

Success:

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.

Medications:

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.

Activities:

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.

Surgery:

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).

Reprogramming:

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.

https://www.facebook.com/groups/232392623486874/

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 RahulGladwin.com

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.

Battery Placement

I want to talk a little bit about battery placement as I've had quite a few discussions with people about that recently.

My battery is in the right side of my chest, just below my collarbone.  When I was discussing the stimulator with my surgeon we talked about battery placement.  I didn't really want it in my chest, as I thought the battery would be very obvious and the scar would be more visible.  I suppose this is true, but he told me that having it in my chest is better than having it in my low back/upper buttocks where a lot of surgeons place them for the following reasons, which all made sense to me:

1. It takes about 3 times more wire to run the battery down to your lower back, as opposed to your chest.  More wire means a longer surgery, more disturbance to your body, and a longer healing time.
2. When they put the wires down your back, they go through muscle.  When they go do your chest, they don't go into the muscle, or if they do, it's very minimally.  If you know anything about muscle, it takes a long time to heal, which means having wires runs through it increases your recovery time substantially.
3. There is a lot more movement through your back than there is through your shoulders/chest so with the rear battery placement, the potential to pull your wires loose is much greater, which of course leads to one (or more) revision surgery(s).
4. Charging the battery and using your remote is awkward as it is...having that battery in a place that is hard to reach and hard to see makes using it that much harder (in my opinion).

Speaking to people that have had their batteries placed in their lower backs, I find all these things to be true.  Yes, I have a more visible scar but my recovery was easy compared to what some others have been through.  I've also heard of doctors wanting to put the battery under your arm, but that was a discussion I never had...it was never brought up as an option for me.  I can't imagine having it there...I think it would be terribly annoying!  Therefore I think discussing battery placement options with your doctor is very important.  And if the scar on your chest is the biggest thing holding you back, just remember that it becomes a conversation piece, a way to educate others about headaches and the available treatment options.  Or it can make you look like a badass if you make up a story about how you got in a wicked bar fight.

In the Meantime...

Originally, I was told that my permanent stimulator would go in a week after the trial, which sounded great because I could get on with my life, and because I wouldn't have much time between the two to worry about pain. Unfortunately, my doctor scheduled my permanent installation (ha, sounds like I'm getting new kitchen cabinets or something...I wish!) for June 4. That made a 3 week gap between one stimulator being taken out, and the other put in. Ugh.

Lucky for me, the results of my trial lasted nearly 10 days. I was really surprised by that, but in a good way. I felt great for about a week in there. Then I felt the pain coming back slowly, and then suddenly I was hit with the worst headache I think I've ever had. Bedridden, puking, the whole deal. I thought I was gonna die. I couldn't even get up long enough to go to the doctor, but it wouldn't have helped anyway. They didn't want to give me another nerve block before the surgery...something to do with bleeding risks (I dunno, I don't exactly understand how a lot of those medications work). So I suffered. That initial horrible pain lessened after about 2 days and since then I've just been taking Tylenol like there's no tomorrow (no aspirin products because, again, increased bleeding risk at surgery time).

I'm now actually excited about getting the permanent implant. I was scared for a long time, but after going through the trial, and after going through that excruciating headache following the trial, I can't wait to have the implant in me. I know it won't be a walk in the park but at least it everyday the pain gets less as I heal (unlike with the headaches) and that there is an end in sight to that pain. Now if June 4 would just hurry up and get here...