Thursday, December 31, 2009

Happy New Year...and New Decade!

When I think back to last year at this time, the difference is amazing. I was hopeless this time last year...not working, fighting my headaches, spending most days in bed and in pain, and seeing no excitement in another year of the same. I was depressed, negative, and tired. But this year is different. I'm actually excited for the new year. I'm excited to be able to go on trips, to make commitments, to make plans, to return to some of the activities I love that have been put on hold for several years, to be able to look ahead instead of taking life one day at a time. I do not usually subscribe to the idea that a new year is a fresh beginning but this year I have changed my outlook a bit, and I really do contribute that all to the success of my nerve stimulator.

This is also the end of a decade that has been pretty outstanding for me. I graduated college, got my first professional job, bought my first house (and my second), bought my first horse (and my second), got married (only once!), did some exciting travelling including my first trip overseas, and won a war on headaches that I've been fighting for more than a decade. It's funny how things look when you view a bigger picture.

So here's to the new year and the new decade. May they bring more happiness, more fun, more accomplishments, and no more headaches, not only to myself, but to everyone!

Sunday, December 27, 2009

ONS Doctor List--I Need Your Help

Happy holidays! I hope everyone had a wonderful Christmas and is looking forward to a brand new year. I know I am! 2009 was a little rough (at least the first half) but I am so hopeful for the future so I think this New Year's will call for quite a celebration on my part.

In the spirit of giving, I want to be able to give readers a list of doctors that they can go to if they are interested in a nerve stimulator. I'm interested in any doctors/surgeons that use occipital or peripheral nerve stimulators as a treatment for headaches, migraines, occipital neuralgia, etc. .. basically any diagnosis associated with head pain. I get a lot of requests for this information but haven't had much luck putting together more than a handful of names. It would be an invaluable resource for blog readers. So if you would, please send me your doctor's name and/or the name of the medical facility they are associated with, as well as the city they are located in. You can list it in the "comments" section if you are comfortable with that, or email me at

Thanks for your help! The information you give me may serve to help someone else control their pain and that is one of the greatest gifts you can give, in my opinion.

Tuesday, December 15, 2009

I'm here, I promise

I haven't written a lot lately as I don't feel there is much to say since I'm now fully healed and feeling good, but I wanted to remind you to feel free to contact me with any questions, or if you need someone to commiserate with! I wrote this blog as an attempt to help people learn and make decisions about neurostimulation and I am willing to do that any way I can so please do not hesitat to contact me. I still do check this blog and its associated comments and emails. You can email me anytime at:

I'll leave you with a photo of one of my dogs in his Halloween costume (he's a turtle). Random, I know, but I couldn't seem to find an appropriate picture for such a short and subject-less post so this is what you get!

Thursday, December 3, 2009

My First Error Message

I know I've been lax about writing lately but it hasn't been because I've forgotten this's more that I don't feel I have much to say! Things are good...I'm healed up from the revision surgery, things feel great, my pain is very much under control, and life is good. Repeating that over and over doesn't make for a very exciting blog!

I did have one interesting incident this week that I suppose is worth writing about--I got my first error message from my stimulator. I charged it before bed on Monday night and everything was fine. I didn't have it turned up very high, so honestly I couldn't really tell if it was on or off...which is a good thing, in my opinion. It's nice to not be constantly aware of the stimulation. Anyway, on Tuesday night I had a bit of pain and went to turn the stimulator up, but the screen on my remote popped up with a picture of a telephone and a doctor, with the letters "POR" beneath it. It was obvious that it meant to call my doctor but of course it was 10:00 at night so that wasn't a possibility. I busted out the manual (which was still sealed in the plastic...I haven't ever used it) and found that this particular error message means "Power on Reset." I know...not very descriptive. The manual said that this error message means there has been some sort of interference, the stimulator has been reset, and that stimulation was not available. I, of course, thought that meant that all my programming had been deleted, and at the least I'd have to go meet up with my Medtronic rep to get things straightened out. But I don't tend to give up quite that easily. I took the batteries out of the remote for a few minutes, put them back in, poked a bunch of buttons, and wouldn't you know that error message went away and it magically started working again! I spoke to my Medtronic rep the next day and he said that particular error message isn't usually a big deal and can be solved exactly like I solved it. He said that I probably went through some store theft system that caused the interference, although for the life of me I can't figure out where that would be because the only places I went that day besides work were the post office and the bank, neither of which have magnetic theft systems. Who knows...maybe I just stood too close to the microwave at dinnertime! (No really, I've been told that's an actual possibility.)

So that's it. That's the extent of my drama, which is really a good thing. It's so nice to not be constantly dealing with doctors, pain, drugs, side effects, surgery, etc. It's nice for things to be quiet and medically boring. I will not complain about that!

Friday, October 23, 2009

*GASP* Swine Flu!

As I last reported, my recovery from the revision surgery was going smoothly. I spent about 3 days in bed, I was completely exhausted, but came around pretty quickly after that, although I really didn't leave my parents' house all week. I scheduled my plane trip home for Sunday, October 18, and was planning to spend the day with my mom and sister on Saturday. Lo and behold on Saturday morning I woke up with a really dry, scratchy throat, and my lungs felt dry, for lack of a better description. I couldn't quite figure it out but within a few hours the fever hit and I was in bed, miserable. Turns out your truly had contracted the much dreaded swine flu.

Honestly, swine flu doesn't scare me. More people die every year of the regular flu than the swine flu so I'm really not sure what the craziness surrounding it has been about. I just loaded up with Tylenol, Mucinex, and 7-Up and hunkered down. The flu is nasty, I won't lie. I don't remember ever feeling that sick. My temperature got up to 104 degrees at one point. But...such are the symptoms of the flu.

I of course had to stay in Chicago, and call my boss telling him I'd probably be gone another week (thank god for my flexible job and understanding boss). But what really irked me is I couldn't figure out WHERE I'd picked up the flu. The incubation time is 3-5 days. My symptoms started Saturday. I had gone out with my sister on Friday, but there's no way that was the origin. The ONLY other place I'd been all week besides my parents' house was the hospital on Monday, when I had a post-surgical visit with my doctor. I was in the hospital for all for 20 minutes but I guess that was enough. I must have been worn down enough from surgery that I was susceptible.

I know swine flu really has nothing to do with migraines or occipital nerve stimulation, but I do have a point for making this post, so bear with me here. My point is to remind you how much surgery takes out of you physically, that it makes you more susceptible to infections and disease, so remember to take extra precautions to stay healthy while you are recovering, even though it seems hard and might even sound pointless.

I'm healing well from the revision surgery. I'm flying home on Sunday (knock on wood), and I should get my staples out on Monday. My battery incision looks great and I already feel relief from having a looser wire in my neck. Swine flu and all, I still say the revision surgery was worth it. I'll take some pictures when I get home on Sunday...I don't have my digital camera here with me in Chicago and that kind of newfangled technology is beyond my parents. Shh, don't tell them I said that!

Wednesday, October 14, 2009

Revision Surgery

I traveled to Chicago last Thursday as planned, for a minor wire revision scheduled on Saturday. Naively, I scheduled my plane ticket back home for Monday evening.

I had an appointment with my surgeon Friday morning. The good news was that what I thought might be wires protruding from my head are actually just sutures that haven't yet dissolved and my skin is rejecting. So it's pushing them out and I shouldn't worry about them. That's a relief, let me tell ya. Then we talked about my wire revision. At first the doctor wasn't convinced I needed it, said the tightness was just from healing, but I made him really look at and feel the wires and he saw what I was talking about. He said they could take the wire on the right side out and bury it deeper, but that would include re-opening my battery incision, re-tunneling the wire, and opening my head again. I thought about it but I decided that if I'm gonna have this thing for the rest of my life, I want it to be correct and comfortable. While we were talking, we also decided to remove one of the wires on the right...the one that runs across my forehead, because I really don't use it. That means no more bump on my forehead from the end of the wire! Call me vain but that little bump bugged me 100x more than all the other scars, and even the big old battery in my chest. I don't know why. Maybe because it was impossible to cover.

Anyway, surgery was Saturday morning at the hospital. The weird thing is I wasn't nervous, like not at all. I guess surgery has become old hat at this point! That's kind of sad. But everything went smoothly. I was in surgery for two hours, way longer than I anticipated, and was put fully under...breathing tube, the whole deal. Just like last time, I didn't feel like the pain killers prescribed to me after the surgery were sufficient so they had to track my doctor down to ask for more and I didn't leave the hospital until about 8 p.m. I forgot how exhausting surgery is. I didn't really eat or get out of bed for any significant amount of time until Tuesday. I haven't scheduled my flight home yet, but at this rate I might as well stay through the weekend.

Actually, the worst part of the whole thing was that they turned my stimulator off during surgery and never turned it back on. Vicodin and all those narcotic painkillers tend to give me a headache in the first place, but without the stimulator it was even worse. Sunday and Monday mornings I woke up with a raging headache. I got it under control but it was a pain in the butt because my battery, which the remote control has to touch in order to work (I know, not very remote huh?) was buried under a bunch of bandaging so I had to rip through all that and eventually replace it.

I'm back on restricted activity for 8 weeks, which is really lame because I was done healing. I felt really good before this surgery. But I keep telling myself it'll be worth it. I can already tell the wire feels better. It's not perfect, it's still a little tight over my clavicle when I turn my head but I'm sure in another month I probably won't even feel that.

From all the people that I've talked to that have stimulators (any kind...occipital, spinal, etc.), it seems like revision surgery is fairly common. I think it's hard to get things in just the right place when it comes to something as ambiguous as a neurological surgery. But if it makes you feel any better, revision surgery is definitely not as harrowing as the original stimulator surgery.

P.S. My doctor mentioned he's read my blog...imagine that! So if you're reading, Hi Dr. E! And thank you!

Friday, October 2, 2009

Back to Chicago

I've been complaining that the wire in right side of my neck is too tight from the beginning, and I had planned to have it lengthened sometime this fall, probably in November, but it turns out I'm getting it done next Saturday, October 10. About 2 weeks ago I was feeling around on my head, now that the swelling is totally gone, and found that there is a bit of wire sticking out of my head where the connector is on the right, just above my ear. I'm not 100% sure it's wire but I'm not sure what else it would be. I asked my husband to look at it, he even got out a magnifying glass, and said he couldn't tell, it's too small. So I can just feel it, not see it. It doesn't hurt, but if you run your hand over it, it feels different from hair...stiffer, thicker. Kind of like when you have a splinter in your hand, and you can't see it but you can feel it...that's what it's like. I also actually have the same thing on the left side of my head, but not on the connector. That one is just randomly by the crown of my head, but it's right where a wire is so that's why I'm pretty sure they are bits of wire sticking out.

Anyway, I called the doctor and was told to get in there ASAP because if there is wire sticking out, then that means there is an opening in your skin, which makes you much more susceptible to infection. And if this thing gets infected, the whole stimulator has to come out and I have to wait a minimum of 3 months to have another put in. So I figured making the trip to Chicago was worth it!

I'm flying out Thursday evening after work. I have an appointment at 9am to have this all looked at, then they've scheduled me for surgery Saturday morning. It should be pretty minor, I'm really not worried. (It's kind of sad when surgery becomes "no big deal.") Then I hope to fly home Monday. Unless there are complications, or they have to do something drastic to fix the wires in my head, I think that should work out just fine.

On the bright side, I get to see my family, my best friend, and probably eat some sushi!

Thursday, September 17, 2009

Contact Me!

I'm here to help...that's obviously the point of this website. So I've decided to make myself more accessible. If you don't want to post your questions under the comments section, or want to have a more in-depth conversation, I've set up an email account reserved specifically for this blog. Please feel free to contact me at

Wednesday, September 16, 2009

Cindy McCain--Migraine's New Spokeswoman

My boss sent me this article last week and I was really excited about it.

Generally speaking, I'm not a Cindy McCain fan. But in this circumstance, Cindy McCain may actually make a great spokesperson for the cause. She may have enough sway with the powers that be to actually accomplish her goals, which is very exciting. Her goals seem pretty lofty...but in this case I think it's a good thing. We need someone like her to get the word (and the money) to the right people. Migraine research and treatment are long overdue for some more attention. I truly hope Mrs. McCain can be the one to help the cause take that leap.

When I was so disabled by my headaches last year, I talked to several people about the possibility of going on medical disability for them since I could not seem to keep up a full time work schedule. It turns out that unfortunately it's nearly impossible to get disability assistance for simply having migraines. I think it's because unless you have them, most people don't understand the severity of these types of headaches. And because there are so may causes for them. That makes them harder to classifiy that most other medical afflictions. But sufferers know just how dibilitating they can be, how they can affect your life. It's time for the decision-makers to pay attention to that and change accordingly.

So I say "go Cindy!" I only wish it wouldn't have taken you so long to take some action. Oh well, better late than never, I suppose.

Tuesday, September 15, 2009

I Don't Know What To Say!

Well, it's been nearly 14 weeks since my surgery and I guess I haven't written much because there isn't much to say...which is a good thing. I seem to have gotten the programming worked out as best I can, and have been feeling quite good. I usually have a little bit of a headache, and don't therefore feel good enough to often do anything horribly physical like working out, but at least the pain isn't always in the forefront of my consciousness and I am living a normal life.

So normal, in fact, that I actually got married on September 4 and took a vacation that weekend. That's a pretty big step for me, since for the last few years I haven't been able to plan one day in advance, much less weeks or months in advance. It was nothing too exciting...just went to the courthouse and then went to a nice resort and Yellowstone for the weekend but I felt great. I drove a lot, drank some wine, and no headache. Not even a little, which was such a blessing.

I still seem to be getting a migraine about once a month (I've had 3 since my surgery). These are headaches that the stimulator doesn't help...I just have to turn it off an rely on my migraine rescue drugs (i.e. Zomig). And acetominophen (Advil) seems to help a lot too, oddly enough. Sometimes I get upset that I still have headaches at all but once a month is a heck of a lot better than nearly every day.

I'm still fighting with the insurance company, but now for different reasons. There are parts of my surgery that they say weren't "medically necessary." I don't know how some random dude behind a desk in an insurance office gets to decide that, but it's the sad truth of things. There are about $5000 worth of charges that they don't want to cover. Seeing that I've already spent $5000 out of pocket this year, and didn't work or get paid for 4 months, I cannot afford to pay it. I plan to appeal their decision but am still waiting to see if my doctor will just write off the charges. I'm ready to fight them though, I don't care if it's a long haul. Bring it on. I've also heard from several different people that if you pester and annoy them enough, the insurance company will eventually get sick of you and just pay the charges. And if there's one thing in this world that I'm good at, it's being annoying!

P.S. Oh, and wow, over 1000 hits on this blog site! Not too shabby! Thanks for reading!

Tuesday, August 11, 2009

Insurance (insert expletives here)

It's been over 2 months now since my permanent implant was "installed." As of last week, I hadn't seen the final bill yet. I shouldn't have to pay much since I believe I've reached my maximum out-of-pocket for this calendar year ($5,000). Thank goodness for caps on personal insurance expenditures. Anyway, on Thursday I get a call from the billing department of the hospital where the surgery was done. The lady tells me "you have a very large claim with us pending from June."

"Uh, yeah." (ingenious answer, I know.)

"Well your insurance refuses to pay it until they receive a 'Coordination of Benefits' form from you."

"I have no idea what that is."

"It's a piece of paper telling them that you don't have any other insurance coverage, so they are responsible for the entire claim. I tried to tell them that was the case but they won't listen to me. They said they sent you the form..."

"No, I haven't seen anything like that."

"Well, then we have a problem."

Fantastic. I nearly had a heart attack because the bill was $138,000. I don't have that kind of cash just lying around. In fact, I'm pretty sure I've never had that much cash in my life.

Fast forward to Saturday.

Lo and behold, what comes in the mail but the "Coordination of Benefits" form. All I had to do was check a box on there saying that I don't have any other insurance. Really? They couldn't call and ask me that? They couldn't fax me that? But either way, if they had talked to the lady at the hospital on Thursday, and I just got that in the mail on Saturday, I'm pretty sure they didn't even send it to me before they talked to her!

So, I called her back today, told her I had received the form, and put it back in the mail yesterday. Luckily she was very nice and said she'd just put a note on my file to wait on insurance a little longer.

Here's what gets me: part of the reason I spent four months in Chicago trying to get this figured out was becuase I was waiting on insurance approval for this procedure. Did they approve it and forget? Did they approve it and then decide it ended up costing too much? I really thought all this stuff was figured out months ago so it makes me angry to have to deal with it again.

And people think this country's healthcare system doesn't need a kick in the ass...

Tuesday, July 28, 2009

I'm Regressing

I seem to be taking steps backward in my healing. On Friday I noticed a scab on my battery incision, which is weird because it's been smooth and scab-free for weeks now. I cleaned it, put some neosporin on it, and covered it for the night, and lo and behold the next morning I could see it was a hole. How does that happen??? I kept it covered and kept neosporin on it for the weekend but by Monday it was itching, hurting a bit, and another hole had developed on the scar. I went to my GP and she said it's not infected, but could become infected so she put me on antibiotics. Yay. More pills. Apparently if I get an infection, the entire stimulator has to come out. So I guess I shouldn't complain too much about just taking some antibiotics. Anyway, she said she thinks it's irritation from the internal sutures. But why now? Why 7 weeks after surgery??? I have no idea. It's frustrating because I was supposed to be good to go after 6 weeks...and now I have to restrict movement again while those holes are there. No more riding, no lifting heavy things, no repetitive movement of that arm/shoulder. I don't know if I irritated it last week from moving hay and riding...that's the only thing I can think of. What a drag. But at least my head has been feeling good...I haven't even had to have my stimulator on at all for the last 3 days. Gotta count your blessings, I guess.

Friday, July 24, 2009

The Good and the Bad

I'll start with the bad. Saturday night I came down with a MASSIVE headache. It hit me out of the blue. I hadn't been feeling great all day but I had kept things under control well enough. Then at about 7:30pm a headache hit me like a ton of bricks. I was nauseous, I could barely see out of my left eye, it was horrible. I went to bed but nothing helped, not heat, not cold, not even laying very still in the dark. And of course I have no migraine medicine anymore so I am SOL. I took some Vicodin, but it didn't do a damn thing. At about midnight, after puking my guts out, I took some Excedrin Migraine, because it's really all I had that I thought might help me. And amazingly enough, it did end up helping. At about 2:30am the pain was nearly gone, so I could get to sleep. Of course when I woke up the next morning it came back, but I popped Advil and Extra Strength Tylenol all day until I was nauseous and it kept me at a functional level.

First thing Monday morning I called my doctor to get a refill on my "rescue" medication (the one you take only when you actually get a migraine, not as a preventative). I was really bummed about that. But then I thought "if I only get a migraine once every six weeks, that's still a heck of a lot better than it was before." And it's better than having constant pain. So I am still ahead of the game, by my calculations. I can deal with that...the sporadic headache. I just need to be prepared with some medication for when it does happen.

Now for the good news...I finally rode a horse this week! I haven't ridden since January because I just wasn't feeling well enough for it, and then I was gone in Chicago for 4 months, and then I was recovering from surgery. But I got my old mare out this Wednesday and rode her around the pasture. It was great! Nothing hurt, nothing felt like it was moving around, it all just felt good and normal. I also helped get hay this weekend. They were light bales, about 45 pounds, but I was able to help throw them around a bit without too much discomfort. So I think that means I'm officially healed and can move on with my life. No more physical least not when it comes to my shoulder/battery implant site. My head still gets to pounding when I bend over much, like to weed the garden, or if I really do much in the way of getting my blood flowing (i.e. running, working out) which is unfortunate. Only on my really good days can I do that stuff. So it looks like I will not be starting any kind of workout routine and am therefore destined to either 1. be on a perpetual diet or 2. be perpetually chubby. Sigh. Well, I guess you can't expect this nerve stimulator to work complete miracles...

Friday, July 17, 2009

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.

Thursday, July 16, 2009

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'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!

Tuesday, July 14, 2009

Bio-Oil and Swearing

ABC News published a really interesting article today. Apparently scientific research finds that swearing when you hurt yourself can actually act as a natural painkiller. Now I didn't want to give Nate this information, as he already cusses like a sailor when hurts himself in any way, but science is science, right? It's good to know that when I was lying in bed cursing (albeit quietly to myself) when I woke up from surgery and was in enough pain to spend the night in the hospital instead of going home, I was quite justified. Now I better explain that to my mother...and probably a few nurses.

Also, thanks to a friend, I found a really great scar treatment called Bio-Oil this weekend. Now, I can't yet attest to its effectiveness personally, but according to everything I've heard, both online and from friends of mine, it's fabulous stuff. You have to apply it twice a day (which is less than the other scar gel I was using), and it smells good (it has rosemary, lavender, calendula, and chamomile oils in it). It doesn't get your clothes greasy either. The one downside is it seems a bit pricey, but then again you get quite a bit in the bottle and a little goes a long way. I dunno, I just really like it, so far at least. I guess you really have to use it for at least 3 months before you seem much in the way of results but heck, I have a lot of healing to do so that's no big deal. It's not like these are old scars...they are brand new. I'd be putting something on them anyway so I thought I'd put something natural and effective on them. And just FYI, Bio-Oil can be used to treat scars, stretch marks, uneven skin tones, aging skin, and dehydrated skin. Multi-purpose...I like that for sure!

Friday, July 10, 2009

The Other Side of the Coin

I was surfing the net (such a funny term) and came across this fairly recent article regarding ONSTIM research. I was actually surprised that they didn't find the nerve stimulators to be more successful in the trial, but then I also would like to see the full details of the study. I'm curious to know how they picked candidates and what kind of pre-testing they did.

I'm sure occipital nerve stimulation isn't for everyone, just like drugs or hormones or diet changes aren't for everyone. So on the opposite side, I found this account of a woman who tried nerve stimulation and it didn't work for her.

Although to be honest, she was just deceiving herself throughout the process, which probably led to the failure, in a way. If she had been honest in the first place about her pain and results, she probably wouldn't have been chosen as a candidate for nerve stimulation and therefore wouldn't have had the chance to say that it's worthless and a failure. She, of course, failed to post my comments saying that I was "the other side of the coin" and that nerve stimulation worked for me. I hate biased writing like that. Although she does make a living off blogging about her migraines so what would she do if she ever did find a solution to them? I"m a big proponent of taking your medical care into your own hands, not accepting that you just have to live with chronic pain (as so many people do), and the power of a positive attitude.

Anyway, in an attempt to be less like her, I am hoping to post a few links that show that nerve stimulations isn't the God-sent for everyone as it has been for me.

Sorry, I just have to comment...if this took you SEVEN surgeries then your surgeon sucks. Period. That is unacceptable. No wonder the thing didn't work for your headaches.

Okay, so those are really the only negative accounts I can find right now, and unfortunately they are from the same site. I will keep looking though, as I think it's important to have both sides of the story. I can find way more positive stuff on nerver stimulators than I can find negative. I just wanted to attempt to be more balanced in my blog by posting things that differ from my point of view, unlike some other bloggers *cough sounding like "Kerriefromthedailyheadache"*.

Ultimately of course the decision is your and you have to be honest about what you are feeling and use your body to tell you the truth, not your emotions. I would have thought that was obvious but apparently it's a pretty big problem with people that experience failures with occipital nerve stimulation.

Wednesday, July 8, 2009

I'm Gonna Be Famous!

Okay, not really. But my doctor called yesterday to check on me and said that because my stimulator was such a success, and that there are so few of them for headaches, they want to advertise my case and do some articles and whatnot about it. She said I can expect a call from the first reporter some evening this week! I'm excited to get the word out there. Heck, that's why I started this blog. But of course a blog doesn't really reach that many people. I want people who feel a desperate and frustrated as I did to know that there ARE options out there for them so I will talk to anyone and everyone about it. I'm sure some pepole will get sick of hearing about it but if I can help one other person, it's all worth it.

While I had her on the phone, I also asked about getting these wires on the right side of my neck adjusted. She said she was sure something could be done about that...but of course I have to go back to Chicago sometime to do it. So maybe over one of the long weekends this fall I can do that...if I can stand it long enough to make it until the fall. Part of me thinks I should get it adjusted ASAP and move on with my life. But my bank account (and probably my boss, if I'd ask him) argue otherwise.

Tuesday, July 7, 2009

One Month Post-Surgery--Update and Photos

Sorry I've been a bit lax in the last week. There wasn't a whole lot to report, and with the holiday and my birthday, I was busy with other things! Yep, I turned 29...not the perpetual 29 but for real 29. I think 29 is going to be a good year for me. I have high hopes.

Anyway, I took some photos for an update, so you can see how things are healing. These were taken today so it was about 4 1/2 weeks post-surgery.

This first photo shows the battery and the incisions on my neck. As you can see, the battery does stick out quite a bit...more than I had hoped. But it doesn't show through clothing or anything...unless you wear something skin-tight, I suppose but I'm just not that type of girl. The incisions on my neck are still fairly red but they cover up pretty well with a little makeup. They aren't nearly as protruding as the were a few weeks ago. The one on the left hurt last week, I'm not sure why. Any time I turned my head it gave me a sharp pain. So I was back on painkillers for a few days for that but it seems to be fine. Maybe something tore loose a little? I have no idea.

I know this photo is blurry but my digital camera is smarter than me and I just can't get it to focus on things really close sometimes. I took this photo with my head turned, to show you how the wire is tight on my right side like I've been talking about. I spoke to my doctor about it and was assured they can fix that but the problem is that I have to go back to Chicago for that and that won't be happening anytime soon, unfortunately, so for now I just have to deal with it. Thank goodness for my anti-anxiety pills!

This photo is to show you what the incision sites look like. Both side of my head look basically the same. You can see I still have long hair in front of my ears so you really can't see this unless my hair is pulled back. And no, my neck isn't really that fat and bulging, it just looks weird because I have my head turned in this photo. I also don't dye my hair but you wouldn't think it to look at this photo!

And finally, an up-close of a head incision. Again...I have focus issues.

And that's about it. There are no other incisions or anything to show. The incision sites are still a bit tender, and I still have some lumps on my head which I'm assuming are hematomas, but they are getting smaller (very slowly). I tried to photograph those but it didn't work out.

I had a bad headache on Sunday but now that I seem to have most of the programming on this thing figured out, I got rid of it pretty quickly. I'm a bit disappointed that relief isn't immediate when you turn the stimulator on but it's still a million times better than taking a bunch of prescriptions and having all those side effects. I'd say it still takes me a couple hours to really feel truly better, but I think I may get quicker relief as time goes on and I use this stimulator more and as I get other little tricks figured out.

Oh, and I got my official medical card to put in my wallet to warn people that I have an official reason for setting off metal detectors. Watch out Wal-Mart, here I come! Muwahahahaha! (That was my evil laugh, by the way...these things just don't come across so well in writing!)

Monday, June 29, 2009


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*

Friday, June 26, 2009

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.

Thursday, June 25, 2009

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's definitely tighter on that side. It doesn't restrict my movement or 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.

Sunday, June 21, 2009

Home Sweet Home!

I apologize for taking several days to respond to some of your comments...I was traveling back home to Wyoming during that time. It's been 14 1/2 weeks since I've been home and it's good to be back. There was snow on the ground when I left and now the grass is green and the flowers are blooming. It's weird, I feel like I just missed a big chunk of time/life being somewhere outside of my usual daily life.

But I feel good! The last day I took my painkillers was on Thursday. I get a pang of pain here and there but it's not bad...not enough to take the pills. I spent yesterday spraying weeds, grocery shopping, doctoring my horse's eye (he decided to poke it on something just a few days before I was going to be home...big dummy), etc. I got really hot (it was 85 degrees out) and had a small spell where I could really feel those wires in my neck and it made me feel a bit claustrophobic, but as soon as I cooled off a bit I was fine. I think after time I won't even feel those things anymore. The battery may be another story. I'm always kind of aware of it because it just seems so big and so obtrusive. It doesn't bother me very often, it's just sort of an annoyance sometimes, like I want to say to it "will you just go away already?" But of course that's silly...I'd rather have that battery there any day than have the pain.

I have had one issue in the past few days...anxiety. At first I thought it was because I was home and had all this stuff to do to get my life back in order. Friday night I took 2 anti-anxiety pills to be able to sleep. But last night was 10 times worse. Took 2 more anti-anxiety pills and they did nothing. It was one of the most horrible nights ever. Even this morning I couldn't just relax. I feel like I'm breathing really quickly and shallowly. To be honest, I'm having a hard time sitting still to write this right now. Then I realized what it probably is...lack of pain pills. The ones I was taking were morphine based. I was on them for 2 weeks, and then just suddenly quit taking them. I imagine they made me rather calm and now that that's out of my system, I feel like I've got ants in my pants. do I remedy this? I got lots of exercise fact I was rather exhausted last night, but my body just wouldn't cooperate. So now I'm just annoyed. I've taken all these pills over all these years and this is what it all comes down headaches but I'm as jittery as junkie. Awesome.

Tuesday, June 16, 2009

Damage Assessment

Here it of the damage. Today is day 12 after my surgery. My staples were removed from my head, which hurt, but not terribly. Just about as much as you'd think getting staples removed from your head would hurt! I also got the bandage taken off my chest incision (where the battery is). Turns out there aren't any stitches there to remove. He put in some internal stitches and then just used surgical glue so I think it will heal up nicely.

So here you go...the debut of my bare chest on the internet!

Obviously that's where the battery is on my right. It's still bruised and a bit swollen but it really is feeling better every day. I'll take another photo in a couple weeks to show you how it's healing up. Look up on my neck as well. There is a little bump on each side. The one of the right (my right) is kind of high, the one on the left is low. That is where the wire extenders are. There will always be bumps there, because the extenders do stick up a little, but they should get less red and obvious over time. There were little incisions there (no stitches, just glue) but you'll barely be able to see them I'm sure.

Here's another one...a profile shot to show you how the battery sticks out.

I think this picture makes it look worse than it is...but maybe not. It's still a bit swollen and whatnot, but not too much. So yes, you can see it if you look from the side, but you can't see the outline of it or anything from the front. Also, you can't see the bump through clothing or anything like that. I think it'll feel more obvious than it actually is. I'm making sure to keep scar ointment on the scars to help them heal and be less obvious. I know they'll never disappear but I'm sure it won't hurt to minimize them.

So...I don't have much of a swimsuit body anymore, although to be honest, I'm not sure I had one before! And I'll have to chose fancy dresses a bit more carefully in the future to try to de-accentuate (is that a word? I doubt it) the scars and bumps. But it's all worth it. I feel so much better. I don't feel like just laying in bed anymore, I feel like going out and doing things again. I feel like going back to work, having a regular schedule, being a productive member of society again. I feel like riding my horses and going camping. Heck, I even feel like having a drink! I'm not scared of that sending me to bed for the next 3 days. So scars and all, life is good.

I also got the okay from the doctor to go home today! WOOHOO! So I'm headed back to Wyoming at the end of the week, and will be back at work on Monday. It's been 14 weeks now that I've been away (15 by the time I actually really get home) and I am SO glad to be done with all this and get on with my life. The last few months have been a struggle but what is it "they" always say (actually I think it was Thomas Jefferson but whatever)? "Anything worth having is worth fighting for." I've fought for my health and now I have it. Or maybe "what doesn't kill you makes you stronger" fits a little better. Eh, you know what I mean!

Monday, June 15, 2009

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!

Saturday, June 13, 2009

"Comments" tool should be functioning now.

I heard from several people that they were not able to post comment on this blog. I think I fixed it now, so if anyone wants to be the guinea pig, comment away! Sorry about that...I don't really know much about computers, I just pretend.

Take It Easy

On Thursday I was so exhausted that I slept all day. Literally. I didn't get out of bed until 4:00 p.m. and still went to bed that night before midnight...and slept for a good 8 hours. Yesterday (Friday) I took a 4 hour nap in the middle of the day, and last night I slept 12 hours as well. I seem to forget that surgery was only a week ago, and that it really takes it out of your body. I have to keep reminding myself to take it easy. Otherwise I seem to be exhausting myself...apparently. Not a very good idea!

I'm also still taking pain meds. Sometimes I think "I feel so good!" and then I over-do it and end up hurting, or I think I don't need my pain meds anymore, and then once they wear off completely I realize that was stupid. I guess I'm having a hard time realizing that I'm still recovering, but I definitely am still body is telling me so. So, if you have surgery, just remember that it'll probably take a few weeks or a month to be back up to par, even if it is what they call a "simple outpatient procedure." What's simple to the doctor is not simple to your body. Although I find it hard to believe that hooking up all these wires and tunneling them under my skin is a "simple" procedure since it's hard to find a doctor that actually does these ONSTIM implants. I guess it's not as hard as, say, open heart surgery, but I'd say it's a bit more complicated than maybe an appendectomy. But who am I to classify surgeries as simple or hard?

Friday, June 12, 2009

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!*

Tuesday, June 9, 2009

If this doesn't make you feel like Frankenstein...

There's nothing like some good ol' metal staples in your head to make you feel like Frankenstein. I finally took a photo to share. Both sides of my head look virtually the same so I figured I just needed one picture. There are 7 staples on each side of my head. I'm guessing they used staples because it is in an area that doesn't have to be stitched nicely since it will be covered by hair because they used stitches on the incisions in my neck. I've never had staples before...I can only imagine how fun it will be to have them removed on Friday.

I was worried about them shaving off a bunch of my hair. Dumb, I know, but I'm attached to my hair, and with all the other scars I'm going to have, I didn't want to have half my head shaved too. Luckily my surgeon was pretty conservative when it came to shaving my head, as you can see. When I put my hair down (which I haven't done yet since surgery since they won't let me have a shower yet, grr), you probably won't even be able to see the shaved patch, unless you are looking for it. That's what I'm hoping anyway! Cute hair-dos like ponytails and braids and all that fun stuff will be out of the question for probably 6 months but c'est la vie.

Honestly, the whole thing looks worse than it is. When I look at pictures of people with hair shaved off and staples in their head, it freaks me out. This was one of the things that gave me massive anxiety before surgery. But it's really not bad. They don't hurt and I really can't even see them unless I look. So although it looks scary and gross and might make some people run away from the idea of an occipital nerve stimulator, I can tell you that it's not nearly as bad in reality as your imagination makes it out to be. I promise!

I haven't taken photos of the other incisions yet because they still have the steri-strips on them, which I am not allowed to take off until Friday, so taking a picture of them now would be can't see anything. I'll take photos once I get all that junk off them. And if you're really lucky, I'll even let you see the awesome hematoma on my chest incision too.

Monday, June 8, 2009


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 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 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 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.

Wednesday, June 3, 2009

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'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!

Monday, June 1, 2009

Things I Have Tried to Treat These Headaches

I thought it would be good to include a list of things I've tried over the years to treat my headaches...both treatments and tests. When I tell people I suffer from headaches, everyone seems eager to repeat something to me that they've heard about headaches and their "cure." I try to take their comments graciously, even though honestly, when I've suffered this long, I've tried pretty much everything mentioned. I suppose that sounds snotty but it's the sad truth. So anyway, I'll make a list of my trials, in case it might help someone else figure out a new treatment for themselves. This is in no particular order. (This list may be edited in the future as I remember more things.)

  • Diary--tracking foods, weather, hormones in an attempt to define headache triggers
  • Diet changes--reduced or eliminated foods to see if there was any improvement, including caffeine, sugar, wheat, dairy
  • Daily "preventative" drugs--anti-epileptics, anti-depressants, beta blockers, calcium channel blockers, steroids, NSAIDs
  • "Rescue" drugs (i.e. triptans)--tried them all, the only one that worked was Zomig
  • Herbs--I went to an herbalist who recommended things for the particular needs of my body
  • Supplements--potassium, magnesium, lecithin, calcium, vitamin D, vitamin B-12, CoQ10, butterbur, fever few, etc., and a few herbal mixes designed specifically for migraine treatment
  • Biofeedback
  • Chiropractic
  • Cervical traction
  • Massage
  • Acupuncture
  • Oxygen therapy
  • Physical therapy
  • Exercise
  • Wisdom teeth removal
  • Dental biteguard (NTI--supposedly particularly effective on migraneurs)
  • Nerve blocks

  • MRIs--head and neck, on several occasions over the years
  • CT Scans
  • Discography--one of my MRIs showed a bulging disc in my neck; this was to rule it out as a source of pain
  • Blood tests
  • Hormone level tests

Friday, May 29, 2009

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...

Sunday, May 17, 2009

Results of the Trial

The first two days of the trial, I really struggled to distinguish the surgical pain in my head from the headache pain. But on Wednesday the surgical pain diminished and I could tell where I still had pain, and therefore started adjusting the stimulation levels and getting familiar with the ONSTIM unit (that's what Medtronic calls their occipital nerve stimulators). The stimulator replaces pain with a tingling sensation. I thought it would drive me nuts but it was actually fairly pleasant, like a little massage for your head. And once you get the stimulation levels set properly, you pretty much cease to feel the tingling, unless you really concentrate on it. Sometimes, when you move your head or neck a certain way you can feel the stimulation more than at other times, but again, it's not unpleasant.

I found the stimulator to work quite well. I would say my pain reduction was 80%. I could even turn it off for periods of time and residual effects of the stimulation would continue to keep the pain at bay. The funniest thing is that because the nerves being stimulated are responsible for sensation to the scalp, when you have the stimulator on, your scalp is rather numb. That'll take a little getting used to but still, it's a million times better than a headache.

My pain has always been on my left. Unfortunately, once we got rid of that pain via the stimulator, I found that I also have some pain on the must have been masked by the worse pain on the left all these years. I spoke to my doctor on Friday when the trial stimulator was removed, and for the permanent one, he is going to run a set of wires to the right side of my head as well. They will be connected to the same battery, so I won't need two batteries, but unfortunately that means more wires and more tunnelling under my skin when they implant the thing. But again, I'd rather do that than start having to deal with headaches on the right side of my head and go through this all over again in the future.

I've had the stimulator out for 2 days now, and am still not feeling much pain since the stimulation effects can last a few days, although the process of removing the wires was rather unpleasant in itself. It was just done in the doctor's numbing, no nothing. Actually the worse part was having the stitches taken out, as they were still very raw, not having the wires removed. I could barely feel that part of it...luckily. Unfortunately they are waiting two weeks to implant the permanent device. I guess I have to heal up from the trial a bit before they start digging around again. Honestly, I'm ready to have it now. It will be more painful than the trial, as I'll have wires on both sides of my head (I have no idea how I'll lay my head on a pillow to sleep) and because I'll have the battery implanted in my chest. But it's still an outpatient procedure and I definitely think it will all be worth it in the end.

Friday, May 15, 2009

The Trial

My trial stimulator was scheduled to be "installed" on May 11, 2009. It's an outpatient procedure that supposedly only takes about 20 minutes. Nonetheless, I was horribly anxious about having wires put in my head, about the fact that they said I'd be awake for the surgery, and that they'd have to shave off a bit of my hair.

During my surgical consultation the week before, we had decided to put two wires in, both on the left side since that's where my pain has always been. One wire was to cover the occipital nerve, the other was to cover the auriculotemporal nerve (if I remember correctly). Both nerves control sensation to the head. The occipital nerve controls sensation by the base of the skull and the back of the head, while the auriculotemporal nerve controls sensation near the temples and on the top of the head. There are other nerves that may also be targeted with nerve stimulation, but these were the two that were found to be causing my pain.

When the time came, they actually put me under for the surgery. I remember them prepping me, the doctor double checking where my pain was to make sure he was putting the wires in the correct place, and then before I knew it I was asleep. I wasn't even expecting to fall asleep. I had been told they would use a local anesthetic, and would give me some sedation, but that not enough to put me under. I woke up when they were turning the stimulator on. They wanted to make sure I could feel it, that it was covering the proper locations. The whole thing was much less scary than I had anticipated. And they didn't even shave off any hair!

The wires were inserted a bit behind my headed up toward the top of my head, the other headed down toward the base of my skull. They were secured by a few stitches here and there, but the stitches were buried in my hair. I wasn't sure what to expect pain-wise, but I wasn't given any pain medications, just an antibiotic. But the pain was tolerable, I never felt the need for anything stronger than some Tylenol. Sure, my scalp was quite tender because I had just had wires burrowed into it, but I guess the pain was about as would be expected...not as painful and an incision but still tender to the touch.

During the trial period, the wires just come out of your neck and are attached to an external power source which you must carry around with you (it's on a little clip that attaches to your belt). There are also some wire connectors and whatnot that are taped to your neck and shoulder (as you can see in the photo). According to my doctor, the biggest risk during the trial period is infection, because it's considered and open wound where the wires come out of your neck, even though it's stitched up. You cannot shower during the trial period. My doctor decided to leave the trial stimulator in until Friday, so I had 4 full days to decided if it was working for me, and whether I'd want to proceed with having the permanent stimulator installed. I've heard of trial periods lasting up to 10 days but honestly, I had my answer in less than 4 days and was ready to get those connectors un-taped and that battery pack unhooked by Friday so I thought a 4 day trial was sufficient.