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 recovering...my 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?

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!*

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 pointless...you 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.

Post-Surgery

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

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

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

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

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

Implantation Complete!

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

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

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

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

What IS an Occipital Nerve Stimulator?

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

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

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

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

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

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

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.)

Treatments

• 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
  

Tests

• 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