Aftermarket Defects

Is It Too Late To Ask For An Upgrade?

Today has been better.  My pain is less, I am not taking any pain medication although at this time of night I start wishing to.  I was able to step up my consumption to semisolids, and some diverse liquids.  I was able to finish grocery shopping (tried to do two weeks worth at once since I don't know what the future will bring).  The pancreas pain on movement seems to be calming down, and if I remember correctly from past experience everything else should calm down too.

I think my Mom got supplied with a substandard pancreas for me before I was born.  I blame my Dad's family genes, but really they should have been sent back for rework.  The rest of my body is definitely outlasting some of the parts, maybe I got the durability of general health from my great-grandmother who died at 103, and the frailability of specific parts from the rest of the gang - a defective organ here, cancer there, thyroid dysfunction from them, diabetes from those, etc.  I certainly got short dumpiness from my father's mother's side of the family.  And my really annoying voice.  Heredity - you stink!  However, I have better eyesight than my brothers and sister, so I got lucky there!

I am finding it very hard to sleep.  I dreamed last night all night about going to a hospital in St. Louis with a couple of boys I grew up with - I think they sat in my row in the second grade.  Although we were grown up we were still in school, and the school nurse had sent us to this place. There were very high swingsets in the dark hospital garden and we could swing up up up into the light and then jump off and land in an above ground swimming pool on the other side of the garden wall.  We could see planes from the nearby airport flying overhead, and lots of stars (it was night) and dark green wild pasture all around us.  If we splashed too hard into the above ground swimming pool, it collapsed and let the water out, us with it.  The dream ended with me swooshed out of the pool to the ground.

Hoping to get sleepy soon, am trying my best. Don't want to get days and nights mixed up.  Hope to rest as much as possible tomorrow, so I can work Monday.  Readjusted my head buzzer, as it was getting a tad sore from the buzziness, maybe that will help.

Bleh Bleh Bleh

That Kind of Day

We had good news today that my niece did famously well with her back surgery.  Her husband has stood up to the stress well too.  I'm relieved and glad, and  my sister is much more relieved, and has gotten to talk to her daughter several times today.  We don't think Shelly will remember it, but it sure was nice of her husband to dial the phone for her, as we are certain Shel is a little too drugged to dial it herself!

Not feeling very well today, still can't keep any food down.  It has been several days since I last tried, so I thought maybe today would be the magic day.  Nope.  Just Bleh Bleh Bleh back it came.  I don't think anything is actually digesting, even with the enzyme supplements.  I sure am glad I have fat reserves galore; starvation isn't really an issue as I can melt down quite a bit before you get to skin and bones.  I am still staying at one dilaudid tablet a day, but really could have used more than one today.  I guess I shouldn't force things by eating, but how am I going to know when it is possible or not?  Pancreatitis is just no fun.

Finished my last survey for the occipital stimulator study.  The study coordinator said another participant that finished today had the same excellent results I have had.  Yeah!  The only thing I have left to do is mail back the palm device the electronic headache diary was kept on.

Several people have asked me if I have to have the stimulator removed now.  Nope.  It's mine, all mine!  Permanently implanted with battery replacement surgery guaranteed for life.  Yeah!

Worked some from home today, some tonight.  Everytime I get the VPN up, my regular internet connectivity drops so it is making it hard to work on items that are emailed to me.  I have to write down the data, close the browser and then sign on the VPN.  Very frustrating, but at least I can connect.  Actually did a bit of programming today.  Hopefully it is not drugged programming.

Found an old MetLife ad about stress with Snoopy on it.  I am going to have to try to de-stress and get back on the happy track, maybe a little Snoopy happy thought mojo will kick start the process.  Lack of food is making me pitifully whiney.  The pain meds aren't even making me sleepy either, because the pain is sucking the life out of the medication. Tomorrow will be better - won't it??

Princess of All Things Pancreatic

Pain Pain Go Away Come Again Another Day

I have tried to work the last two days - was able to do 8 hours plus Thursday, but only did around four hours Friday.  I have some work to do this weekend which should more than make up time - I am trying like heck to do eight or more hours a day.  I tried to eat today, and while I am not as shakey the pain has been somewhat overwhelming. 

The oxycontin tablets (10 mg 2x dly) are helping to take the edge off the pain, but I have what I call pancreatic spasms which this dosage just doesn't touch.  I guess I will cut off eating for another couple of days and then see how the pain is when I try to eat again.  At least I have enough pain the oxy is not making me woozey or drugged feeling.  I am delaying the morning dose until I come home from work, then if able I take the second dose around one or two in the morning.  Don't seem to have much luck getting to sleep so that is OK.

On the up side I did get a lot of work done the last couple of days.  I won't have to travel for work until the second week of August which is a big relief for me.  I am hoping the pain will be much less by then.  I may have to break down and go see Dr. Gnome, but just not looking forward to the trip.

My kingdom has shrunken down to what The Belly commands.  The pancreas speaks and I come to attention.  Having trouble sleeping because of pain and also because the pancreas hurts less when I sleep sitting up - a hard trick to do without a hospital bed.  Right now the pain is pretty much on the severe side - I am hoping that it subsides soon.  Maybe the sitting up part is why I have gotten so much done at work the last couple of days.  Feels better than reclining!

I have an appointment with Dr. SassyPants on Monday.  I do hope I don't have to put on the huge pair of paper shorts again.  With all the pancreatic pain going on, I may put my pursuit of leg pain fixes on a back burner for a while.  I am sick enough I don't want to be poked, prodded or exercised at the moment.  I am even thinking of postponing my Cleveland visit for the end of my trial.  Not sure if I can abide the travel.

Going to try to go to sleep soon.  My petunias are blooming, my tomatoes are ripening, and the weekend beckons - needing a good pick me up, so maybe gardening this weekend will do the trick!  I am becoming obsessed with the belly pain and I need to actively distract my mind.  My weekend work project should help also.  Behave Body!!!  Depose the malicious pancreas cartel and get back to normal (as normal as I ever am!).

Home Again

Back from Cleveland

Very tired, legs are protesting, but made it through the trip without too much trauma.  The Headache tried to throw a fit but I managed to stomp it back into it's hidey hole.  The legs have had it, with the cane being totally necessary yesterday and today.

Never try to travel when you have a bad headache trying to worm its way out.  I got on the train system in Cleveland and totally missed my stop.  I got out where I thought I should be, and a very nice young girl directed me down the street where I could catch the bus to the Cleveland Clinic.  The plane schedules were very hectic as some storm had hit the northeast - I never thought I would get on a flight to Milwaukee to get back to KC.  People were very grouchy as flight after flight was delayed or cancelled.  One flight got cancelled because there were no flight attendants for the flight.  Thinking I will drive next time if I can get someone to ride with me.

I actually saw Dr. Mekhail this time, he examined my incisions (which have all healed well) and asked how my headache control was doing.  I told him that once or twice a month The Headache escapes and I was thinking perhaps if I had a pulsating program on the stimulator it might do better for those bad days.  Lilly, the study coordinator, found an ANS rep there at the clinic and she came in and added a couple of programs for me.   I haven't tried them yet, but will if The Headache keeps getting worse.

I am very discouraged about The Legs.  With the therapy and the epidural and the new muscle relaxers I was thinking that I would have less pain with travel and standing, but unfortunately it wasn't so.  Feet and legs are hurting and weak, and the pelvic pain is making me tremble when I try to stand.  I'm OK once I get on my pins, but the action is hard to do.

The client I was going to have to go to for the next install has decided to delay everything for two weeks.  I'm glad I don't have to go so I can maybe try more therapy and get myself in better shape.  Unfortunately I don't think damaged nerves are going to respond to therapy.  Damaged muscle: yes.  Dysfunctional movement: yes.  Nerves that aren't transmitting correctly: no.

I have to go back to Cleveland on July 22nd.  I tried to get out of it, but I have to be there to finish more surveys on their computer system and to have another physical review and to turn in the palm pilot headache diary I picked up this time.  Hoping they are able to publish soon.  Don't know what I will do if the clients try to reschedule to this week.  I have never turned down going to a client even at the worst of times healthwise, but this might be the one time I cannot go.  Hoping luck is with me and the client will delay further.  Not so good for my company, but I am being selfish today.

Maybe I will get to stay home over the 4th of July holiday.  It's my favorite holiday of the year.  I have two nieces born in July and one great nephew born in July, and a step great niece born in July.  A happy time for everyone!  Woo Hoo!!!  I am sure my legs will be better by then and I will be able to enjoy the day.

Doctor SassyPants

We Have a Plan

Saw a new doctor today, the physiologist.  I'm gonna nickname him Dr. SassyPants, because he's the cheerful joking kind of doc that gets down to brass tacks quickly but keeps it light.  Doc SassyPants quickly decided that I didn't have facet joint arthritis problems, and a facet joint injection wouldn't help.  Then I had to do some tricks like walk on my heels, tippy toe forward, and walk flat footed, all the while worrying that my paper exam shorts were going to fall around my ankles and trip me!  Thank God I had on my granny underwear for modesty's sake.

For the exam (I guess because it's of the lower spine) they had me put on a pair of paper shorts that must have been made for Humpty Dumpty.  They were so wide they wouldn't stay up, and so short in the seat that I couldn't get them pulled up to a decent height and the bottoms of the legs were below my knees.  I'd like to know what sort of person they designed those things for - I just can't imagine anyone that wide with so short a straddle region and such long legs.  I'm short and wide myself and I was lost in these things.  They must only come in one size - HUGEMONGOUS.

I came out of the appointment with a plan of action:  a script for a muscle relaxer to help my right piriformis muscle relax (I had to request a different med - the one Dr. SassyPants prescribed wasn't covered by my new insurance and was $300 a month! Waiting on the new script), a referral to pain management to be evaluated for a peripheral nerve stimulator for the pain, a referral to physical therapy for some help with my foot drop and weakness and the piriformis muscle problems, and a referral to a pelvic pain physical therapy group for the pudendal nerve issues.  Per Dr. SassyPants if the muscle relaxer doesn't work, we will then try Botox injections in the Buttocks to get the piriformis muscle to relax.

I don't have much in the way of reflexes left in my knees and none in my ankles.  I know my right leg is worse than my left, and the foot drop is worse on the right foot.  Dr. SassyPants says that radiation induced lumbosacral plexopathy  is the culprit and there really is no fixing it (as I suspected) but we can try and manage it.  I did tell him that I was not sure if I wanted to pursue the pudendal nerve therapy as just about any touch against that nerve sets me into to a world of pain for about a month. I will go to the evaluation and decide after learning what their treatment plan is.  As soon as I get my script for the muscle relaxer, I am to quit taking the Soma - which isn't doing an awful lot anyway. 

I'm thinking the cane is going to be a permanent fixture in my life.  Maybe I will treat myself to an antique cool cane - one with a sword in the handle or a drinking flask under the knob, or mother of pearl inlays with ebony accents.. or maybe I will get one with flames and skulls all over it.  Or how about one of those English Hunting Sticks that turn into a portable seat?? Hmmm, I could have an entire wardrobe of canes!  What a fashion accessory!

On the road tomorrow morning back out to some clients.  Luckily I have a co-worker who is going to drive us - thank heavens for her help, because I don't think The Legs would be able to make it this time.  I am coming back Wednesday, no stay overs this week as I don't believe I will be able to walk more than a couple of days the way The Legs are feeling tonight.

Called Cleveland Clinic, and I will go back there on June 24th, and will return at about the same time in July.  I will have to pick up the electronic headache diary in June and take it back in July after updating it for a month - then I will be through!!!  Hopefully the occipital stimulator results will get published and the device will get FDA approval for migraine headache pain relief.  Too many people are suffering from intractable headaches that are like me - out of medication options.

Beanie the snake bit Boston terrier is doing really well.  His foot is back to normal size and there doesn't seem to be any necrosis in the bite area.  Woo Hoo!

My Yard is in Flower

But my Hives have no Bees

Started hiving today.  Not sure why, but I suspect it is the shot of prednisolone wearing off creating a backlash of hives.  I do that every so often when taking steroids. The nerve pain in my legs and torso was very bad this weekend, and very bad this morning, but a little better this evening because I have sorta just sat around.  Another call in to my PCP to see what next.

The Headache is trying to interfere with this week's work, but I have managed to back that sucker off by changing the stimulator settings.  I am going to have to go back to Cleveland sometime soon to pick up my electronic headache diary again to finish the headache study but haven't heard from them yet.  One of those days at work where I spun my wheels.  Did several productive things, but felt it made no difference.

My boss, The Big Man, is on the road again this week to another prospect.  He's been in super sales mode, and I'm so glad for him and the company, but my body just is not going to be able to keep up.  Wishing I could trade up for a newer model!  It's so frustrating - we are having one of our best years yet as a business and I'm coming up short when I want so much to be pushing forward with all I have.  The new trainer is working out great - she is fantastic!  So I am very much pleased with that.

My cherry trees are blooming, as are the forsythias and my persian lilacs.  This is the first year my wysteria has blossomed so Woo Hoo!!  The yard smells wonderful with all the flowers. A wild turkey went across the backside of the place this weekend and through the neighbor's yard.  The meadow out back is green and shady and it looks like the glade where the deer bed down is doing fine.  We have a pileated woodpecker family back in the woods, but they are pretty shy so no pictures yet.

Going to go to bed pretty soon, after taking quite a bit of benedryl.  Itching all over and hiving.  Just call me Mr. Bumpy or I guess that's Ms. Bumpy to be politically correct.

Headache Better, Belly Worse

More Tests More Waiting

I realized today it has been about 44 days since the last "Bad Headache Day" posting. I've had some flare ups since then, especially when I was in hospital with pancreatitis, but the pain is much less than it was. I still have daily head pain, but now it is around a two on my pain scale most days. Compared to this time last year the pain was staying at about an eight to nine on my pain scale all day and all night. I was contemplating having to quit work because I was so non functional from the pain. Now The Headache has receded to a tolerable level I am optimistically hoping it is whipped. Yeah Occipital Stimulator!

Was able to do a phone interview for the occipital stimulator study intead of flying to Cleveland. Lilly the study coordinator went to bat for me - she's such a nice lady! I have two more visits after this one - the next visit will be in the spring, I will get the headache diary back and keep it for another month. Hopefully by then the ever present nagging headache may have disappeared. I realize that my range of disability from the headache has improved sooooo much since I got my buzzer installed. Now if I can just get The Belly to cooperate.

I have been home sick almost this entire week. I feel like I am letting my bosses and my work mates down because this stinky painful pancreas is flaring up. Dr. Gnome's office called and said I may have to have another ERCP, which I am NOT looking forward to. I am severly allergic to the dye they use with the fluoroscope during these procedures. The only time I had one done, I came out of it with The Headache that never goes away!

Dr. Gnome ordered a bunch of blood tests, which I had done at the lab they faxed the orders to. Several of the tests will need to be sent out to Mayo's (they must be weird ones) so I don't know when the results will come in. The lab techs thought some might be in by Monday. My arms are still bruised up by the blood tests and IV's from being in the hospital and the blood tests I had about a week ago, so the poor lab techs had a hard time finding a vein. I try to be very patient about the blood testing process as my veins seem to know they are being stuck and either dissapear or dry up when a needle gets near. I can't figure out how my body does this. It is extremely frustrating!

The blood tests seemed to be looking for an inflammatory or autoimmune or hereditary cause for the chronic pancreatitis. Dr. Gnome's PA had told me if I have autoimmune pancreatitis they won't need to do an ERCP - that they can treat me with prednisone. I don't like the side effects of prednisone, but would be happy to avoid an ERCP.

I want to get whatever I need done over with, so I can get back to work like a real person and contribute. I have been soooo sick feeling this week and taking pain medication and anti nausea medication that my mind isn't working very well. We are a small company, and right now they need all hands on board. I'm at the point just like last year with The Headache I am almost ready to throw in the towel and quit trying to work. I keep hoping that something will fix The Belly the same way something fixed The Headache.

Well, tomorrow is another day and next week may bring answers to The Belly dilemma or it may just create more questions. I will try and behave myself, and eat very little this weekend so I will be at my best come Monday.

Belly Ache Bungalow

Pancreas Party Time!

Was feeling very sick after the "gastric emptying test". Called the doctor who performed the test, talked with his nurse to ask if I should feel so sick from the EUS or the GET. She couldn't give me any feedback, said first the doctor would need to review my records and THEN she could call me back, but it might be a few hours. In the meantime I just felt sicker and sicker. I called her back and said I was going to go to The Emergency Room or to Urgent Care and not to bother.

I went to the ER, figuring I would get my test results back faster. I then had to explain 3 times that my doctor's practice in Springfield referred me back to Dr. Gnome in St. Louis who then referred me to Dr. Hawkeye in Joplin. The puzzlement on their faces matched mine. They all asked why?? and I replied why indeed?? No answer from me to explain it, it just was.

My lipase was highly elevated again - over 1,000 which for some people can go higher - but that's pretty high for me. That explained the sick feeling, the nausea, and the pain that just won't go away. That was Tuesday afternoon. I got released today, Friday afternoon so a three day stay.

I was admitted to the hospital, and a very good hospitalist over my case, and was given many doses of dilaudid, zofran, and phenergan over the next few days. The first night I had a flare up of The Headache. I am getting used to this as part of the pancreatitis process. I vomit, the pain flares, I get nauseated, vomit again, the pain gets worse until I am so exhausted I can't even go "The Pain The Pain The Pain - bluh bleh blah blub buik" anymore.

This time I had a roommate who had a much worse pancreas condition than mine, and was highly medicated because she had extreme pain and extreme anxiety together. As I was in the head down over the emesis basin mode "I'm sooo sick bug burgh bluk erk" she came over to my bed and rubbed a alcohol swab on my nose, and asked if it was all better now. I told her "No sweetie, go back to your bed and get better" and then started the "buh buck eeeyck hack" back in the basin. I was in so much pain I just bairly noticed nurses aides rushing in and escorting her back to her bed, poor girl. She was trying to help all she could even though she was in awful pain herself. She was so out of it on meds I don't think she remembered doing this.

After about an hour and a half of the moaning and vomiting from me the nurses listened and added phenergan to my mix (I hadn't had any for several hours) which helped calm the throwing up portion. I only had one more episode when they stated I could have some real food like jello and broth - I guess the anticipation sorta started the stomach upset up again! This time my room mate had been transferred to another hospital so I didn't get any alcohol swab on my nose to make it better. I did gain a very nice older lady as my roommate and it was her first goround with pancreatitis. She and her husband were married 58 hears and showed a restored Model A at various car shows, a very interesting lady!

The first night the night nurse came over and had a discusion about my occipital stimulator and migraines. She had 3-4 uncontrolled migraines per week, I said I couldn't see how anyone can work with that many. The next night a different nurse was over my section, and a different person was moaning "I'm so sick" and I heard one nurse say to another - that's room 7xx (my room) she was like that last night, so I stuck my tongue out at them as they marched by. Got a lot better service than the usual 1.5 hour wait from the time you hit the nurse bell until they show up after that, guess they got caught talking out of turn!

The Belly pain has never really stopped for some months now, and it is now pretty severe. The dilaudid just barely controlled it. I'm finally home tonight, off all pain meds for about a day and have eaten some things today. I told the hospital that I was all better (my enzyme levels had fallen) but I just didn't report the pain remainder because there was no purpose to my staying there longer. The Belly just is not behaving properly.

The worst torture they put you through with pancreatitis is that you have to EAT a REAL hospital meal and keep it down before you leave. There are two things I find very difficult to do in a hospital (maybe in my mind they are related??) 1) eat cafeteria food or any food for that matter 2) have a bowel movement in a hospital room bathroom. These may be very strange quirks, but I know I have them - there is no controlling these. I have to just make myself eat that meal and gag it down. The food isn't that bad, its just ...well, wait a minute - the food IS that BAD, not fooling myself there. As to the hospital bathroom, I just have to wait until I get home if that is possible.

I verified with Dr. Gnomes office that I officially have chronic pancreatitis. There it is - a definite diagnosis of a not very good problem. The Occipital Stimulator study coordinator at the Cleveland Clinic called and wants to set a date for me to go back there. I really don't feel well enough to travel, so I will call next Tuesday (when she should be in) and see what we can arrange. The Headache is much better but The Belly is ruling the House of Pain at this moment.

Dr. Gnomes office is going to call back after they talk with Dr. Hawkeye about my gastric emptying test. I don't know if there is anything Dr. Gnome can do from his surgical box of tricks. I don't think there really is - just medicate the durn pancreas for pain and keep the enzymes going, but maybe there is something they can do that is a little less drastic than completely removing my pancreas.

Bad Headache Day #39 2009

Blind Study Portion Over

Back from Cleveland, what a trip this one was! The blind study portion of the test is over, and if you haven't guessed already I have had a working occipital stimulator from day 1. The time frames for pain relief are right in the ballpark for other recipients that had working stimulators also. The nurse from St. Jude said it was a difficult study to "blind" because for ethical reasons the stimulator trial was a real trial, and then if the person got the non-working copy they had to try to persuade them that it was working, and, well, you can feel this so that was pretty hard to do. I am the last person accepted in the study, and they probably will start accumulating data now, before the official finish late 2009. Looking forward to seeing the findings.

My disability scales were much better, showing less disability, and my pain scales were much better on average. I had a very good short visit, and Lilly the Cleveland Clinic study coordinator said she would see if I could just do the last visit over the phone in three months, which would be fantastic so I don't have to go to Cleveland in the middle of the winter. Brrrrrr. Apparently I was one of the only participants who kept up the headache diary daily. I thought that was part of the deal! I was able to hand that sucker back in, thank goodness! I had to use a stylus to type in phenergan, benedryl, and vistaryl over and over and over again, which was a pain in the patootie!

I was at a client hospital working this week, and did pretty good. The Headache was acting up on day two, but it was a short day so that was fortunate.

Traveling back from Cleveland was a nightmare! The Headache decided to flare up during my seven hour wait for my flight. I was already through security so didn't want to go through that again, so I took a combination of drugs to put me out for a few hours while the pain magnified. HOWEVER, the airport only had chairs with arms at the gates in my section, no benches to lay down on or chairs together without arms. I tried sleeping sitting up, I tried sleeping sitting against the wall, and finally gave up and went to sleep on the floor next to the wall - hoping I wouldn't get run over by somebody's rolling luggage. The pain had lowered my body temperature and I had the shakes - part of the process, so no telling what my fellow passengers thought. At least I was able to control the worst of it. I had caused this myself as I took the train to a spot about a mile from the Clinic, and walked to the Clinic, and then back to the train. Physical effort is still causing me problems. I am going to have to relearn where my limits lie. Two miles in the span of a couple of hours must've been too much.

In the interview with the physician, we discussed the fact that I still am having some severe pain plus still having the nausea, eye tearing and light sensitivity when the pain was mostly under control. He asked if I had cluster headaches, and I told him one of my many diagnoses included cluster headaches mixed with migraines and a possible cluster headache variant. I told him that his guess was as good as mine - I could pull any headache diagnosis he wanted to out of the hat and claim it as mine at a point of time. He laughed, and said that my guess was as good as anybody's! Wondering if they see this pain remainder in cluster headache sufferers who receive stimulators. Mine are like swift jabs of a heated icepick stabbing at my brain.

I have an appointment October 6 to see a physician at Washington University in St. Louis concerning radiation after effects. I had emailed a specialist I found in PubMed that had an interest in radiation injury to see if he had any direction to point me in, and bless his heart he booked me an appointment with another specialist. I doubt if I will learn anything new, but if I there is something I can do to be more functional and have less pain I am going to try to pursue it. It goes to show, polite inquiry to unknown specialists can get results! Wash U/Barnes Jewish hospitals in St. Louis are nationally ranked facilities, so I have confidence in their abilities. However, again, they are probably out of network for me. I suspect because of the short time span I will need to gather medical records to take with me. I find this a gesture of futility because with neurologists they never take the time to really review them, but maybe these internal medicine specialists will take the time to look.

Lost day today, as I got home at 5:00 AM - it took me five hours to drive back from Kansas City (normally a three hour drive) because of The Headache - just woke up a little while ago. Took some medication just so I could whip on The Headache again, which contributed to the looooong sleep. Looking forward to a good weekend.

Permanently Electrified

Installation Complete

Have returned from the Cleveland Clinic where I received my new ANS occipital stimulator from St. Jude Medical and their occipital stimulator/migraine study. In keeping with St. Jude's request, I won't say if I got a "real" stimulator program or a "bogus" stimulator program until the logging portion of the trial is complete in 12 weeks. They told me the stimulator is the same, they just give it programs that don't work, or programs that do work. After 12 weeks all the stimulators are programmed to work. Since the stimulator feels "buzzy" when it works, you definitely know if you have a working one or not, but the study coordinator for Cleveland Clinic can't know. I have 4 programs which could or could not work, that I can rotate using the control pad and paddle.

I have to go back again next week on the 9th. This is financially challenging. Not sure what kind of flights, etc., I will be able to find. I definitely didn't feel much like travelling today and had not planned to, but came back a day early because I wanted to save the extra day's hotel money for the trip next week.

According to the St. Jude's representative, the study is now closed to new participants and is in the "wrapping up" phase. They hope that the study will be positive enough that insurance companies will no longer consider it investigational and will pay for it as an alternative for patients with intractible headache conditions.

My brother who went with me said there was a lady there who was finishing up her year of the study. She had gone from multiple disabling headaches a week to three mild headaches a month. Hoping for similar results myself by the time the year is up. I guess you can tell if I have a working model or a non working model by the number of "Bad Headache Days" I have in the next three months!

I have a neck brace to wear for a while to restrict neck movement, and am restricted on movement and what I can pick up, etc. for a while too! The battery pack placement is in my right hip and so far is the most painful part of the operation. My puppy Augie was quite interested in the neck brace - I think he thinks it's some kind of dog collar! I don't recommend travelling so soon after the operation, but I really didn't have much choice. I hope hope hope that this works for my headache and that if it does others will be able to get their insurance companies to pay for the operation because of this study.

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.

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.

It's Now Official

Stimulator Trial OK'd by Study Sponsor

Got a call today from the study coordinator at the Cleveland Clinic. I am officially approved for the temporary stimulator trial. There is one other person that is qualified also at their site. Lilly the coordinator did the interview over the phone (glad The Belly had acted up so I was at home!) mainly just confirming that I had not changed medications or alternative treatments in the last month. Of course I had very carefully not changed anything even toughing out a couple of times when I would have gone to the ER.

Per Lilly she has to write up her notes for the study sponsor and get other paperwork ready which will take approximately 10 days. She said she will schedule me for the trial surgery sometime in early May, and will call back with a date next Monday. Woo Hoo!!! I sure do hope this works. The stimulator in the illustration is the brand for the study, made by St. Jude's Medical, but I'm not sure if the leads are the same or if this one is used for the trial. I was told there were five different stimulators they could use made by the same company so no telling which one will be implanted.

One Less Trip to Cleveland

April 15th appointment to be covered by Phone

Yeah! Score one for me! Lilly the study coordinator checked with the study sponsors and I don't have to travel to Cleveland next week. I am so glad I didn't make plane reservations ahead of time this time.

Lilly said she will give me a call next week and ask some questions, and then review my headache log online. I sure hope I pass! The last few days have been lousy. I am missing work today and have taken a combo of trammadol, benedryl and phenergan so I hopefully can avoid going to the ER.

I setup an appointment with my PCP to get a shot of toradol this Thursday. I hope to hold out until then, because that is my cheapest avenue. I'm on such a tight budget this year since this is year two of only being able to work part time. The Belly does not like the toradol and I think The Headache is not responding to it very well, but I want to give it one more try.....

No WOOHOO for Me

Appointment Cancelled Not Approved Yet

Apparently Cleveland Clinic got its wires crossed. The Ohio Anthem BCBS must have preapproved the stimulator trial. I called this morning and made an appointment to get the stimulator trial installed for next Wednesday, and THEN wah wah wah....the study coordinator called back saying it was not approved by the study and cancelled the appointment.

I'm not sure how they are getting in the insurance company to pay, my understanding is that it is investigational for headaches. Are they using a different diagnosis? Wish I knew! I don't like dicey doctor doings. Of course, I haven't had two specialists agree on my diagnosis since this thing started, so what's one more?

I did ask (AGAIN) if it really was necessary for me to go to Cleveland on April 15th just to hand over my headache diary. After all I am sending it each night and its not like I live very close to Cleveland!

Per the study coordinator (Lilly) the study has not said I am eligible for the implant. They are apparently still debating my overall health. Good Lord, its a wonder we ever get anything past trial stage if this is how clinical trials are performed. I'm OK for the study, I'm maybe not OK for the study, I'm not OK for the study, but then again I am OK for the study. The study sponsors haven't let them know yet. I can already tell that my horoscope probably stinks for today.

I guess this is a study in real-time disappointment (not occipital stimulators). Sigh.