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 restrictions...at 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 all...it's been at least 2 weeks since I've had a freak out about them and had to go lie down. I'll still probably get it fixed this fall if I can, but at least it's not a hugely pressing issue at the moment, which is a relief. Most of my surgical pain is gone. I have a few random pangs here and there but if I press on the incisions, they don't hurt. I rarely notice the battery in my way anymore either, I guess I'm getting used to that too. Sometimes I touch it for some reason and it surprises me because I forget it's there. I still have hematomas on each side of my head, which is getting annoying, but I figured I'd give those at least 2 more weeks before I really start to worry about them enough to call a doctor. I'm kind of over seeing doctors constantly. I'm enjoying the break from them.

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

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

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!)