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/

Tips and Tricks

I wanted to share a few tips and tricks I've learned over the past 6 weeks to get the best function out of my nerve stimulator . Hopefully I'll keep adding to this as I learn more so don't forget to check back.

• A lower pulse rate (i.e. a thumping sensation rather than a buzzing sensation) gives the best pain relief. Mine is usually kept around 25-40.
  

• If you have the proper pulse rate to deal with pain, you don't need the amplitude set as high.
  

• There is less break through pain if you keep the stimulator on all the time. At first I would turn mine off when I was feeling good. But then suddenly the pain would catch up with me and I'd be laid out at least for a few hours with a headache. Now, when I'm feeling good, if I keep it on but at a low amplitude, I don't have those breakthrough headaches.
  

• You can overstimulate an area which therefore causes pain, so if you aren't in pain at the moment it's good to change your stimulation to another location. If you are in pain and turning the stimulator up or changing the pulse rate doesn't help, the pain is probably from overstimulation so it's good to either turn it off for awhile or stimulate another area.
  
  

• If you let the battery on your implant get down too low, it takes a long time (hours) to charge. It's best to just charge it a little here and a little there as you have time so you don't end up having to spend 5 hours just sitting on the couch some day re-charging yourself.

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!

Grrr!!

I'm having problems getting the programming/options on this thing figured out. Saturday I felt fantastic. Didn't have the stimulator on all day. It was the best I've felt since I've had the thing in. But Sunday I woke up with a headache and couldn't get it to go away. It was painful enough to lay me out for a good part of the day and make me nauseous. I was really frustrated. I finally got the programming tweaked properly and started feeling better around 6:30 pm...just in time for the day to be over. I went to bed with the stimulator turned on, and feeling decent, but then was awoken by the pain at about 2 am. I tried to tweak the settings as much as I could but I just couldn't seem to get it right. I ended up having to get up for about an hour in the middle of the night to play with it and whatnot because the pain was too bad to just lay there. The pain lessened for a little while from 3:30 until 4:30, then I had to change the programming again. Got back to sleep, but was awakened around 6:30 (time to get up anyway) with pain. I got up and changed settings one more time. I guess I finally got it right because then the pain started to ease up (slowly) and I was able to get to work, albeit a few hours late. And as of right now, I'm pretty much pain free. Go figure.

I haven't figured out what types/levels/locations of pain call for which settings yet. I didn't realize this stimulator would be so complicated. But, the good news is that when you do get it right, it does work. It just takes some figuring out, which is frustrating.

The other thing I'm grumpy about today is that my battery incision site has been hurting the last couple days. Not a lot, but more than it did last week, for whatever reason. It's not infected or anything like that, just a bit sensitive. And the hematomas by my head incisions are still there. I think they are a bit smaller but I'm not really sure. I think I'll give them another week and if they are still there I'll go to my GP and see what he has to say. Maybe if I'm really lucky he'll stick a needle in them and suck all the blood out. *shudder*

Set-Backs and Tweaking

Yesterday was 3 weeks post-surgery...and I had a bit of a set-back, I suppose you could say. It seemed like this week I felt pretty good in the mornings, then in the afternoons my head would start to hurt. I'd turn on the stimulator but it wasn't helping as much as I hoped. I was starting to get nervous and really disappointed because I thought this stimulator was so great and then it began failing me. So Thursday morning I woke up with the most pain I've had since this thing was implanted...enough pain that I kind of just wanted to stay in bed. So I got out the remote and turned up the juice. It didn't help. Then, being the genius that I am, I remembered that the wire actually crosses the main nerve in my head in 3 places, and that when the Medtronic rep programmed my unit for me, she made it so that I could change where the stimulation is, not just how strong it is. Since she programmed it for me 2 weeks ago, I'd never changed anything but the stimulation strength (they call it "amplitude" in their fancy scientist terms). So I changed it to a different setting and voila, it hit the exact spot where the pain was coming from. It still took about 2 hours for the pain to really go down to an acceptable level for long enough that I was comfortable going into work. But in the afternoon and evening I felt really good. And today I don't even have my stimulator on, so I must have done things right yesterday.

Unfortunately it looks like I have a lot to learn about my stimulator and its capabilities still. I think part of the problem is that I had it stimulating the same area for too long. Sometimes I think this irritates the nerve. When you are over-stimulating, it causes pain, just like a headache but there's also a bit of a different element to the pain, which I'm starting to discover. I hope that someday I will be able to accurately tell the difference between pain and over-stimulation and get the stimulator turned off or switced to a different area before I actually cause myself pain. So I guess there is still a lot of operator error involved and the learning curve is still rather high.

One Week Post-Surgery

It's been a week since surgery. Well, actually a tad more but close enough. I went to the doctor today and thought he was going to take my staples and stitches out but he decided to leave them in a few more days and I have to go back on Tuesday to get them removed. Which is fine with me. I'd rather make sure everything is closed up tight before all that stuff comes out. He said everything looks to be healing well though. He also gave me the g0-ahead to have a shower and wash my hair! WOOHOO! I'd had a couple baths this week, so I wouldn't completely stink, but my hair hadn't been washed since the morning of my surgery. It was dirty and had all the blood from the surgery still crusted in it. My scalp was really starting to itch terribly too...I wouldn't have been surprised to find some bugs hiding in that mess. Not really, but it sure felt that way.

A Medtronic rep was also at my appointment to help program my stimulator. I felt like one of the wires wasn't in the right spot, but she reprogrammed it so that the stimulation came a bit further down on the wire and it seemed to work like a charm. I didn't know they could do that, but apparently they can, which is good to know. She also gave me a few other things to tweak on my own remote, like pulse width, which can give me better coverage as well. They didn't have all that kind of stuff available on the trial stimulator so it was a learning experience for me. They are also going to set me up with a Medtronic rep in either Wyoming or Montana to help me out when I am back home, if I need it. Glad I won't have to travel to Chicago any time I need anything adjusted. If it's surgical I will, but not for adjustments to the stimulator programming.

I'm still tired, my head is still sensitive to sleep on, and I'm still taking my pain meds. But every day seems to get a little easier. Hopefully in another week I'll be able to go home! *Cross your fingers!*