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!

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 onstim@gmail.com.

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.

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:

onstim@gmail.com

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!

My First Error Message

I know I've been lax about writing lately but it hasn't been because I've forgotten this blog...it'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!

*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!

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!

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!