Back to Cleveland

At Least the NBA Playoffs are Away this week

I'm not a follower of professional or college basketball, although most of the guys at work are, so I was surprised last week when all the flights were overbooked to and from Cleveland. A taxi driver had to tell me that the NBA playoffs were going on, and that the Cavaliers were on a winning streak. So back again I go, but the Cavaliers are playing in Atlanta I think this week, so the plane rides should be a little less crowded (I hope!).

I talked with the study coordinator and she asked that I think about when to have the surgery. I told her - at the earliest opportunity! No telling what that date will be. I fly out tomorrow (luckily got a cheap local flight so no drive to/from St. Louis!) very early and fly back Wednesday in the evening. Wednesday morning I have to be at the Cleveland Clinic to fill out what I think is their on-line general anesthesia questionnaire, and then have an appointment at 2:00 to have my stimulator pulled out by the roots.

My hair is getting icky - I want to wash it sooooooooooo badly. It is getting flatter and flatter and flatter every day. I bought some waterless shampoo type things at the local drug store and am debating about trying one. I don't know if it will just make my hair yet flatter and skankier! eeeeeeew Yuck!!!!

Today I turned on the stimulator whether I was supposed to or not: I wanted to give it a drug free try out at work. Not as good a result as I had at home, probably because I was much more active and also was overdue for a bad day on my own headache cycle. I could turn up the voltage and I could ignore The Headache - not sure if it covered up the pain or just allowed me to focus past it, but the minute I let the voltage drop The Headache was back. The Headache has stalled out at about a 7 to 8 on my personal headache scale which is good - generally it would just keep going on up to a 10 and an ER visit! I will be medicating in some form tonight

My bosses are so nice about the absences - we are gearing up for several installs/projects and they really need my man hours but are being patient about the "I don't know" factor of this.

I'm going by myself this time. I was told there was no need for a "companion" to accompany me for removal of the stimulator trial. Personally, I would have taxis and planes - don't have to drive even when you go by yourself but I guess they want someone there if something goes wrong????

With my luck the timing of the surgery will be during the NBA finals with The Cavaliers playing in Cleveland and it will be extremely costly to have two people there and I won't be able to book a flight. I guess I can always drive!

I've Been Sneaking Voltage

Shhhhhh - Don't Tell!

The official trial of the implant was supposed to be over last night, and I guess I was supposed to disconnect everything. But I have to confess I have been sneaking me some voltage today. I haven't been doing heavy duty voltage like all day like yesterday, but it was Mother's Day, and my sister had a lovely shindig at her house for our Mom, and I wanted to go and not have to worry about The Headache.

The Headache is still ever present. I turn down the voltage, turn off the machine and The Headache pops right back up. If the machine is off too much, The Headache goes back to its old tricks and starts hopping up the pain scale. I am going to be very sad Wednesday when they remove this dealybob of an occipital stimulator. I actually read the manual and was able to turn the average gain up on certain settings and ones that didn't work day 1 started to work when I had the amperage hiked.

The best part - my medication usage has been waaaaaay down, and my pain levels (still spiking throughout the day) seem to be under my control for once. Biofeedback didn't give me that, accupuncture didn't give me that, medication didn't give me that, chiropractic treatment didn't give me that, massage therapy didn't give me that, nor did nerve blocks or trigger point injections. Two hospitalizations and uncounted emergency room visits didn't give me that. Thank heaven for electricity!! Thank heaven for the stimulator trial!! Thank heaven for St. Jude Medical!!! Thank heaven for Cleveland Clinic!!! And most of all Thank Heaven for Dr. Mekhail and the Pain Management Department, because without he and his crew deciding I was a candidate for this trial I wouldn't have been able to afford this device.

I've done all this thanking ahead of time and may still be premature. I am hoping that I will be a candidate for surgery. That is still up to the study sponsors. I hope my insurance company cooperates some with the surgical expense, but they have basically told me that this is considered investigational and they will not pay.

I also hope that I am just not wanting help so badly that I am imagining the results. When you have been in pain long enough sometimes you grasp at straws, and although I have been in pain a lot shorter period than some folks its been plenty long enough. I have tried to be extremely careful with myself - letting The Headache take over and then trying to knock it back with the stimulator and then turning the stimulator off to see if the pain comes back - to eliminate wishful thinking. I also did some activities I knew would wake The Headache and then tried the stimulator during the activity to see if it would make any difference, then turned it off to see if The Headache was still there. I'll have the say this, The Headache is extremely persistant! As objectively as I can be, I think the stimulator is doing the job.

One of the strangest side effects is I have been dreaming a lot. I suspect I have not been hitting REM sleep as often as I should because The Headache likes to wake me up at night or not let me sleep until exhausted. Perhaps the amount of medication I was taking was changing my sleep cycles also. I guess its like the title of the Philip K. Dick novel - Do Androids Dream of Electric Sheep? : Do Electronic Stimulator Users Dream of Electric Zaps??

There is a blog of another headache sufferer that tried the trial and convinced herself that it did work when it didn't. The surgery was a great disappointment to her, and reading of her experience I definitely have tried to be objective. For me there has to be a good reason for going under general anesthesia. If The Headache quit tomorrow I would be grateful, but realistically I don't think it is going to do that.

The stimulator doesn't kill all the pain. The stimulator doesn't cure The Headache. If The Headache decided to go full force, I think I would still end up in the emergency room even with the stimulator. What I want would be less medication, fewer exacerbations, and a reduction of my overall pain levels. If I can accomplish those three goals I would be very grateful.

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).

I'm Wired!!! (Only temporarily)

The Trial has started!

Yesterday had my "wiring" installed. Got home in the wee hours of the morning today. Still working with the 7 programs that were installed. Some work much better than others, and some eat up more battery than others. The picture is of the control unit where programming is done for different uses of the stimulator lead. The white wire is connected to a smaller lead wire which is installed under the skin at the back of my head (where the occipital nerve is located)

I have not taken any indomethacin for the last 36 hours. I have a noticeable headache, but it's not at the point I feel I have to medicate. Some of the programs actually seem to knock The Headache back several notches. I am having some post surgical pain, but it really is just an annoyance at this time. Yesterday I took some medication for the pain, but today I haven't.

The settings that seem to help me the most are the ones that seem to stimulate the nerve branches that go towards my ear and the top of my head. Ones that go down my neck don't seem to do anything at all except make my neck tingle. There is one that doesn't seem to do anything even tingle. I can tell differences in the angle I hold my head as to the degree of tingle or snapping/tingle I am getting besides the intensity level I have set on the stimulator.

If you have used a tens unit or muscle stimulator the feeling is very similar, but less "surface" sensation.

The stimulator representatives said the study has shown so far that you should try to use it as much as possible - preferrably 24 hours a day. Since The Headache is there 24 hours a day I have no problem with this. I used it all night and had no problem sleeping.

I am including a picture of the dressing on the back of my neck. This is kinda yucky looking and the tape is sticking to my hair that hasn't been shaved off.

I was supposed to get a "get out of being patted down at the airport" free card saying I had an implant, but I think they forgot to give it to me. I have instructions on how to use the stimulator and I have a card from the stimulator rep, but I ended up having to be patted and swiped down at the airport just to make sure I wasn't a crazy terrorist. At least they checked! I am not looking forward to the return trip but will just allow extra time for pat down.

I didn't make it to work today because I got home way too late. I didn't go to sleep until around 4 AM. I feel frisky enough to go tomorrow though!!

The connection from the stimulator to the leads is kinda flimsy and has already disconnected 2 times - once on the plane going back to my seat on boarding (got caught on someone's stuff and disconnected) and once at home where my puppy jumped up to see me and got tangled. It wasn't hard to put back.

I am going through batteries (9 volts) but the reps warned me of this. They also asked if there was any precipitating event to make The Headache start, and I said yes, it was a week after I had an ERCP under general anesthesia. They didn't seem surprised. Hmmm, wonder if that is a factor that should be studied.

I've Consulted the Magic 8 Ball

MRI Jitters

My doctor had appealed Anthem's decision to not authorize a PET scan, I followed up this week with Anthem since the appeal was mailed to them April 2nd. The appeal is nowhere to be found. I had a denial of an appeal letter sent to me, but it could have been from the peer to peer review. I left voice mail with the appeal department and no-one ever got back with me. I talked to customer service and they didn't know what to do. I spoke with radiology precertification and they couldn't find it. No one at Anthem could tell me what the denial of appeal letter was denying - the peer to peer appeal, or the doctor's appeal. I think the appeal got sucked down into that giant black hole where all unpaid claims go.

I then called my oncologist because my GI doc had already ordered and completed an abdominal MRI because of the pancreatitis. I was hoping I wouldn't have to have any more testing and they could use this instead of a PET scan. They would use it, but I then needed to have a pelvis scan. I had that done yesterday. I had a tremendous headache but I got my brother to go with me to the MRI center so someone could drive.

Got the pelvic MRI done, and now the MRI center has called me asking me to come in first thing Monday (like 6:30 AM) to have some additional studies done by the request of the radiologist. When you have had cancer just having the radiologist need extra studies is anxiety provoking. I am trying to not panic (Serenity Now!) and have consulted the Magic 8 Ball on the internet, and the answer was encouraging.

The Headache is fairly bad today. I delayed taking some medication so I could make sure I could fill in at work for a gal who is off today. I'm paying for that delay this evening. I am sure that hearing from the MRI folks this evening is helping The Headache along. I threw up twice at work and there is nothing worse than puking in a toilet that your co-workers asses have been sitting on. That alone makes me nauseous thinking about it - and I'm full of phenergan!

The Belly is complaining also. It didn't like emptying in the work toilet either!

I am resolving not to obsess about the new studies at the MRI center. What will be will be, and what is already is, and worrying about things that may never happen is counter productive.

In one of the internet groups I belong to someone with the same headache type as I have said a combination of drugs is finally working for her - time release morphine and baclofen and parafon forte. She said her headache specialist thought that the baclofen and parafon forte would change the brain reaction to pain (sorta short circuit it) and it seems to be doing the job. She is young and has had this headache for years and years. I'm so happy she found some combination to help the pain!