Saturday, May 9, 2009

Stimulator Works but Headache Still There

No Indomethacin for Four Days!!!

I think I'm going to be a candidate for surgery. The study coordinator called yesterday to see how I was doing. I told her that the stimulator seems to be 60% to 70% effective. I have had to use some trammadol, phenergan, and Benedryl but not like I have had to in the past, but I have used no indomethacin for four days. The Belly is starting to recover already. Yeah!

I had planned on going to work yesterday, but tornados ripped through our area just as I was planning to leave the house, and work had no electricity. I was fortunate because I recognized the warning signs - ominous purple sky, still silence and intense greens in the landscape and didn't start out on my 45 minute commute. I associate the intensity of the green with the amount of hail in the clouds, and the amount of hail with the possibility of tornados! The day before had been very warm, and when hail drops in quantity it gets cold very fast and tornado rotation starts with the cold air pushing the lighter hot air in front of a fast moving storm. We didn't get a tornado, but one hit just a few miles down the road, and we got terrible straight line winds for several hours. Trucks were blown over on the interstate and it generally wasn't good driving conditions that morning.

I took a nap at noon to early afternoon. For some reason I seem to be sooooo tired with the stimulator on. It may be because I am sleeping very deeply, even dreaming, and not waking up in pain in the middle of the night! I tried grocery shopping in the early evening. Physical exertion is still making The Headache ramp up, but I was able to turn up the juice on the stimulator and partially short circuit it. I had to take some medication later, but The Headache had stopped at an eight and hadn't gone any further.

I find that the most effective settings stimulate the branch of the occipital nerve that circles the side of my head and the ear. After quite a while on high settings I do have to change the program because it seems to fatigue that area and doesn't work so well. After a few hours I can change it back and it does great again. I wish I had a setting that could stimulate the branch that goes up by the center of your head in the back, but none of them seem to hit that one. The coordinator said that the permanent implant will have more complete programming. I only have one lead and they can have two so maybe they could use a second lead???

There is quite a bit of difference in how I am positioning my head/neck as to the degree I can feel the stimulator work. The coordinator said that this gets better with the permanent implant. I am putting on the picture of the battery implant I WISH I get. It is rechargeable and very small. I was told at the beginning of the study that there were 5 or 6 stimulators that could be used, so no telling which one I will get. Rechargeable would be great because that means you don't have to endure battery replacement surgery as often.

I hope hope hope that I don't get the "dud" stimulator (1 out of 3 implants in the study are turned off or just not a working stimulator for the first three months after implant). All stimulators get turned on after the third month, but I have a big work project I am trying to gear up for that will be impossible if I keep going like I am. My luck is that I will get a dud. In reality that means that someone else who is suffering gets a good one, so if I get a bogus stimulator I will try to endure by being happy for the unknown person(s) who got the working ones!

Another silver lined cloud - I haven't heard anything from the oncologist about my MRI's. In my experience you get told bad news very quickly, but good news comes very slowly. Slow is good, no cancer is good (with endometrial cancer you are almost considered cured at 5 years cancer free).


  1. This all sounds like good news!!


  2. Yes - the stimulator seems to being doing the job. And...I am hoping for a cold impersonal form letter from my oncologist telling me my tests were normal!!! Sometimes they put a smiley face :) on these just to reassure you!
    I hope never ever ever to get one with a frowny face. :(

    I'm generally ready for bad news because I haven't gotten much good news for a few years now! Hopefully it is time for a turn around.