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/

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.

Crossing the Threshold

Why the picture of Obama? Because he gives me hope for the future of this country, and right now I'm feeling so good that I'm quite full of hope for my own future so I thought it seemed appropriate.

I've crossed the 6-week threshold. This is about the time when the doctor said I'd be healed up and back to normal. And I have to admit, I'm feeling pretty good. I seem to have gotten the programming figured out much better on this stimulator so I've been doing quite well. I haven't missed any work in the last two weeks and in fact I even earned a couple of extra hours this week! That's the first time that's happened since 2007 so it is kind of a big deal. I must be getting used to the tight wires in my neck because they don't bother me much at all...it's been at least 2 weeks since I've had a freak out about them and had to go lie down. I'll still probably get it fixed this fall if I can, but at least it's not a hugely pressing issue at the moment, which is a relief. Most of my surgical pain is gone. I have a few random pangs here and there but if I press on the incisions, they don't hurt. I rarely notice the battery in my way anymore either, I guess I'm getting used to that too. Sometimes I touch it for some reason and it surprises me because I forget it's there. I still have hematomas on each side of my head, which is getting annoying, but I figured I'd give those at least 2 more weeks before I really start to worry about them enough to call a doctor. I'm kind of over seeing doctors constantly. I'm enjoying the break from them.

I said I would give myself at least 6 weeks before I started riding my horses. Since the farrier is coming this weekend to trim their hooves, they should be good to go this weekend just like me. So maybe I'll take the old mare out and give her a go and see how everything feels. I don't know that I'm quite ready to take the mustang out yet but that has to do with more than just my surgery...he needs a little tuning up as well!

So all is good. I have a few more ideas for posts but I'm afraid that soon I'll be feeling so normal that I won't have anything left to write about!

Three Weeks Post-Surgery

Today is officially three weeks since surgery. I started back to work this week--jumped right in and started going full time. Monday was a bit rough. My head really started hurting in the afternoon and I had to crank up the stimulator, but I still had a bit of a hard time keeping the pain controlled. I'm sure it was just the massive stress of coming back after being away since February. I was fine the next morning. I was also really tired when I got home that evening. I guess I'm not used to doing anything productive for that span of time!

Wednesday was rather warm, and I was driving around in a truck most of the day for work, and for some reason I had another day where I could feel the wire in my neck a lot. Mostly on the right...it's definitely tighter on that side. It doesn't restrict my movement or anything...it just feels kind of weird. I thought I'd be used to it by now, but I'm not, which makes me think it's a little tighter than it should be. I think the next time I go to Chicago (which won't be anytime soon) I might ask about getting a wire extender put in on that wire. I'm afraid that if it's too tight I may over time end up compensating for that and screwing up my neck or posture or something dumb.

"I may walk around looking like this, but at least I don't have headaches anymore!"

Yeah...not so much.

My scalp is still a bit more sensitive than I'd expect, but only really on the left side (the side I had the trial wires put in on). And the battery site is still a bit tender too. Sometimes I forget about it and do something that hurts it a bit, which is annoying. BUT I don't seem to feel it as much as I used to...I'm definitely getting used to it, which is positive. I'm not taking the painkillers anymore...I weaned myself off them during the week as I hated that "junkie" feeling I had this weekend and I seem to be fine now.

All in all, things are going well. Sometimes I feel like I'm not as far along in my healing as I wish I was, but at least I'm back to a sense of normalcy. I even have social plans for the weekend for the first time in months. Yep, I'm just that popular.

I Can Feel It

Today was a rough day. I'm still exhausted for no apparent reason, which is not good because I have only a week before I go back to work. But worse than that, I seem to be very aware of my neurostimulator. This morning it kind of freaked me out. I could feel all the wires coming down the sides of my neck and felt like they were just closing in on me. I wanted to rip them out but of course I couldn't. And I'm always aware of the giant battery in my chest. It makes me wonder if I will ever get used to it. I can just feel it in there, pressing against my skin on one side, and my chest muscles on the other. It doesn't inhibit my movement much, but I'm more aware of it when moving that arm, and it does inhibit movement a little bit, which I notice particularly in the shower for some reason or when I try to turn my head really far to the right. I'm not sure if that's something that will change since I'm still healing or if I'm stuck with what I've got. The whole thing freaked me out and I had to take an anti-anxiety pill...glad I have those. I cut back on my painkillers quite a bit this weekend so I bet the increased awareness of everything is due to my nerves not being so de-sensitized by Vicodin. But still, I can't take Vicodin for ever so I'd better get used to this. It's just weird to be so aware of a foreign object that's in your body all the time and you can't get rid of. I should probably try not to think about it too much!

Post-Surgery

I got home from the hospital on Friday afternoon. The first couple days were a bit rough, although not as painful as I expected. I had laproscopic surgery on my abdomen a few years back, and that was much more painful than this procedure. Then again, I have stronger painkillers this time and the incisions aren't as deep or in an area that moves all that much. But it's a pleasant surprise when you end up being in less pain than expected!

I felt really good on Sunday...good enough to get on the computer, although the angle of my arm when I'm moving the mouse doesn't feel great so I was not on there very long. But of course I think I overdid it that day because on Monday I slept most of the day and was in noticeably more pain. Oops.

Sleeping is difficult because it's hard to find a comfortable position for my head since there are incisions/staples on both sides. I also tend to not sleep well on pain meds. They knock most people out but they get me all crazy, and they make me itch. With all the tape and bandages, it's hard to get at those itches so it's kind of a never-ending cycle of craziness. I'm still taking the pain pills regularly but the pain isn't bad at all. The incision sites are more achy than sharp now. Where the leads were tunneled under the skin just feels like a bruise (it felt like that from the beginning, there was never sharp pain there). I just have to remember to take it easy or my shoulder starts to hurt because I think I'm moving it too much.

I'm a bit worried that the wires on the left side of my head are not in the right place. The front wire seems to be about an inch too far forward, and the back wire seems both too far up and too far to the left. I can't tell if they will work where they are or not because during surgery the doctor put a lot of local anesthetic in my head, and it hasn't worn off yet...my scalp is still numb. So I haven't had the headache pain come back yet to be able to try the stimulator out. In fact, I really haven't even had the stimulator on at all since I had the surgery. Between the pain pills and anesthetic, I haven't needed it yet. Keep your fingers crossed that I'm wrong about the wire placement because if they do need to be moved, that means opening my head up again on that side...something I will not be happy about. I'm ready to be done with surgery, pain, and medications and move on with my life!

I haven't been able to shower yet, which is kind of gross since my hair is crusted with blood, but the doctor told me not to shower until after I'd seen him on Friday to get my stitches/staples out. I think that's a bit ridiculous but I guess I better listen to him. I had a bit of a sponge bath yesterday but my hair is starting to drive me nuts. I've been camping for periods longer than this without a shower but I think it's just the idea that there is all that blood on my hair that's driving me crazy. A bit of dirt and grease is one thing, blood is another. Yuck.

Implantation Complete!

My cyborganization is complete...I had my permanent nerve stimulator implanted on June 4, 2009. Surgery was schedule for 3pm, which was a terrible time because then I had all day to worry and be anxious...plus I couldn't eat or drink at all after midnight so it made for a long day. All went well though, as far as I can tell. I had wires put in on both sides of my head this time (there were only on the left for the trial). I had to have some hair shaved off near my ears on both sides but my surgeon was as conservative as he could be about that. Both of those wounds have 7 staples holding them closed. I'll get some photos up here soon. There is also a small wound on each side of my neck, kind of in the front so more on my throat than neck. I think that is where the wire extenders were put in. Then of course there is the huge incision where my battery is. I'm just supposed to leave it all alone until I go in on Friday to get the stitches and staples out, but some of the adhesives were irritating my skin so I changed the bandages. Shh, don't tell! My sister is a nurse, and she did it for me and said it would be okay so I'm not worried about it.

The procedure was supposed to be outpatient, but I was in too much pain that night to go home. The worst pain was on the left side of my head...the side I'd had wires in and out of just a few weeks ago for the trial. The doctor only prescribed Vicodin for me, and it just wasn't strong enough. So while I was in the hospital he gave me something strong via IV...one of the good ones where you get to press the button whenever you need it. And he prescribed stronger drugs for when I went home too. Once I left the hospital, the pain has been manageable...that first 24 hours was just a bit rough.

A Medtronics rep was also present during my surgery (apparently I talked to him during the surgery, although I don't recall that at all. I thought I was fully knocked out, but he said I was under conscious sedation for the first part of the surgery, just like I was for the trial, so they could talk to me when they turned the stimulator on to make sure I felt it. I have zero recollection of any of this. I don't even recall seeing him in that surgical room! I hope he didn't ask me to reveal my deepest darkest secrets because he could have some really good blackmail info right now and I'd be none the wiser!), and visited me in the recovery room to make sure I was doing okay and to see if I had any questions. He sent me home with a bag full of info and gear related to my neurostimulator.

I will take some photos of the incisions later this week when I get a chance so you can have an idea of where everything is and what the surgical process entails. Typing is still a bit hard though, the angle bothers my shoulder, so that's all for now.

What IS an Occipital Nerve Stimulator?

I guess I haven't given a very good explanation of what an occipital nerve stimulator is. I'm going to try to do that, but pictures are worth a thousand words, or so they say, so I'm going to put a few pictures with this too for all you visual learners.

The word "occipital" refers to a nerve in your head. It controls sensation in the scalp. The "nerve stimulator" obviously refers to the device put in you and what it does. Therefore there are more than one type of nerve stimulator. There are peripheral nerve stimulators, spinal stimulators, trigeminal stimulators, etc. They are all basically the same device...they are just named for the nerve they work on.

The nerve stimulator is made up of a battery and some long wires (called "leads"). The battery is 2" x 2", and about half an inch thick. So it's about the size of an Oreo cookie (well, the cookie part anyway, not all the filling and the other cookie). The battery is implanted somewhere in your body. For occipital nerve stimulators, it's usually implanted in the pocket of fat right below your collarbone, so that you're really lucky and get to be a 28 year old with a pacemaker-type scar. Oh wait, that's just me. They can be put in your back, but the chance of lead displacement is higher then because there is a higher amount of movement through your back. Personally, I'd rather not have the leads move and have to deal with that so I'm okay with the pacemaker thing. The battery lasts anywhere from 10 to 25 years, depending on how much you use the stimulator. I figure that by the time I need my battery changed they'll have developed one the size of a paperclip. I wonder where they'll put that. The leads are placed in your head via a small incision, between your scalp and skull. Then they are tunneled under the skin with a hollow needle and adjusted to cross the proper nerves. They send an electrical signal that your nerve senses...it's a tingling sensation. This sensation blocks the nerve from sending a pain signal. Pretty straightforward concept, if you ask me. Apparently the stimulator can have up to 4 leads attached to it. There are two places to connect to the battery, and you can join two wires together via a connector (as shown in the photo at left), for a maximum of 4. From the incision site, the other end of the lead is tunneled under the skin on the neck and shoulder down to the battery in your chest. So everything is just under the surface, and is fully embedded in your body.

To control the stimulator, you have a remote control, which I hear are very expensive to replace if you lose yours. You only get one with your implant. It's a bit bigger than an average cell phone. With this remote you can turn the stimulator on and off, control stimulation strength and speed, and control all these things on the individual wires. Unfortunately you have to hold the remote control right over the battery to get it to function, it's not exactly like a TV remote that you can point and shoot from across the room. But then again maybe that's a good thing, in case it gets in the wrong hands. This is also another reason to have the battery placed in your chest as opposed to your back where it would be quite hard to reach.

The battery is rechargeable. Recharging frequency again depends on how much you use the stimulator, but typically it's a good idea to recharge every other day. The charger has to be held over the battery as well, just like the remote, but only takes about 20 minutes to recharge. So if you just sit/lay and read a book or watch TV while you do it, it's not a big deal. Maybe I can tell my boss I need to "recharge" every day around 2pm and get a nice medically excused nap everyday. Hmm, I might be on to something.

As for restrictions, well, they are about the same as anyone with a pacemaker. You'll set off metal detectors, but they give you a medical card to carry for that reason. You can't go in an MRI. No ultrasounds in the vicinity of the stimulator (my doctor said nothing above the waist), no muscle stimulators (like some chiropractors use). You have to stay away from welding machines (not sure why but my experiences with welding are limited to watching my boss weld together some rebar in a garage about 5 years ago so I'm not exactly a leading expert on the subject). I also know a gal who has a spinal stimulator and says she sets off the burglar alarms in Wal-mart, but I don't think of that as a restriction, I think of it as retribution...a way to annoy Wal-mart the way it annoys me. See, there are many benefits of a nerve stimulator...probably more than you even thought!