Wednesday, September 12, 2012

146 Days- Is my head under warranty?

It has been a couple of months since my last update... And there is some reason to post now, so here it goes.

Since my last update, things had been going fairly well. And before I get to the issues, A couple of positive highlights...

The Good

* I have been able to sit at the computer for a few hours and test drive my ability to function as an artist again. It has helped me feel a hell of a lot more like myself. I quickly realized I still have limitations, but it was a start.

* I have been able to start reading books again! So many in the backlog. I get pretty bad nausea and vertigo when I turn the pages or my eyes jump from the bottom of one page to the top of the other, so I am not reading quite as fast as I used to...but if I pace myself, I can get through it without the extreme pain I was in before.

*If all goes well regarding "The Ugly" section...I'm looking forward to attempting additional daily exercise in an attempt to regain a level of health I'm more comfortable with.

The Bad

So, starting around the 4th of July... Monsoon season hit pretty hard here in the desert. It was around that time I discovered that my Stimulation was no match for Barometric pressure. I had some of the most brutal headaches of the past few years, and definitely the worst since surgery. Basically, storms put me on my ass and there was nothing that could be done about it. So, as long as the weather was clear, I was doing alright.

As I mentioned...aside from storms, I also learned that the stim doesn't help when a good ol' fashioned Migraine headache hits. The ones I've known since my teen years. The no lights, no sound, no movement, no talking type. Just a dark room, an ice-pack, and my pain. I get one every few weeks and they don't respond to abortive drugs. The good news is,  I had luck in the past with a preventive drug which I plan on possibly resuming given the H.C. was being fairly well controlled by my stim. The only reason this hasn't happened yet is because scheduling with him is currently a couple of months out, and I had to cancel my last appointment at the last minute due to scheduling conflicts and transportation.

The Ugly

For a couple of weeks, the leads in the back of my head started feeling...odd. There was a very obvious coil that suddenly starting feeling bulging and uncomfortable.

This past Saturday, I was hanging some clothes in my closet when I felt a very slight popping sensation in the back of my head and suddenly my stimulation was in a different location (At the base of my head near my neck at the exact center of my head under the original incision spot) and it was very painful with every movement of my head akin to a tattoo machine. So, I quickly retrieved my programmer and began testing and to the best of my knowledge, the bottom lead (The most effective one recently) has dislodged and migrated. I switched to a program utilizing the top lead only (Which is neither all that effective or pleasant) and contacted my St. Jude rep.

She suggested the first step should be an appointment with her to reprogram and see if we can "recover the stimulation" by I'm assuming moving the stimulation to points on a different area of the lead that may still be in a good spot.

She said they would probably order and X-ray and go from there.

From the folks I've talked to, it doesn't seem likely that this can be remedied non-surgically, but I'm trying to stay positive. Considering how happy I was, I can't even entertain at this point the prospect that 4 months is all I'm going to get before things go south.

So, I'll know tomorrow. Wish me luck, and I'll post once I know more.

[Heavy Exhale]

Wednesday, July 4, 2012

Almost Two Months since surgery!

And boy has time flown!

So, turns out I'm one of those slacker bloggers that starts out with the best intentions in the world but then life gets going and the posts stop. My most sincere apologies. [Note: You may have noticed that during recovery, I attempted to do mobile updates to the blog, but due to a change in programming on the Blogger site, those appeared as gibberish, adding to the frustration and guilt of not blogging]

But the difference here is the mere fact that life was able to get going! My stimulation was turned on one week after surgery and my life seemed to change overnight.

As I've explained to people...this isn't a cure. BUT...and that is a big but, it is a treatment that allows me pain vacations. I have anywhere from 40%-100% relief from the stimulation. So, I'm doing pretty damn good...most of the time.

Since I have neglected the blog for so long...there are so many things I wanted to explain and recount in detail that I just won't be able to now. But I'd like to occasionally post now when items of importance arise or when things I feel may be helpful to others come up.

Here's a short list of things I wanted to post about in detail and didn't have an opportunity to. I eventually decided I would not have a chance to retro-actively post two months of info and just had to suck it up and update you lovely people! So, if anyone wants/needs more information on any of these topics. Just ask, and I'll expound on it in a later post.

1. Surgery Day Experience/Lead and IPG placement
2. Amazing friends, family and support system who helped me during recovery
3. A heartfelt thank you to those who contributed financially
4. Minor post-surgical infection
5. Programming appointments and fine tuning my stimulation with St. Jude folks

And now the present. As I said, I consider myself to be doing pretty good. I am healing well (Sans some hypertrophic scarring on my chest incision) and I think I'm where I should be in my post-surgical timeline.

I will be seeing my headache specialist and/or pain management doc soon to discuss resuming a drug to prevent my true migraine headaches (Which are much more noticeable now that the constant HC headache is being somewhat controlled) I am getting one every week to two weeks and pre-HC had good results with Topamax. Hopefully it will work for me again.

I am able to socialize with friends over dinner and the like without needing two days recovery on the couch. I  have more energy...not as much as pre-HC, but I'll take it! And I can only think that can improve with time.
I can be a bit more liberal with my spoons/marbles.

I've already lost about 15 pounds since surgery simply from being more active in daily activities. I hope this continues and I look forward to being able to get more exercise in the future, as I gained 80+ pounds since the headache began.

The computer still gives me some trouble after a while, but I've more than doubled the amount of time I can look at the monitor. I can read for a bit at a time too! I'm so excited to catch up on my to-read list.

I can drive for short distances now (That was a recovery milestone I was very happy about) Since I have to turn off the stim to drive, the headache doesn't take long to return and about an hour or two to get under control again, so I keep the trips short.

Basically, I'm starting to feel more like myself again. Or at least feel like I have the opportunity to evolve into a me again. I enviously read on other blogs a few months this point, I'm so happy I was able to do this, and I'd do it again in an instant.

Again, I apologize for the lapse in posts. I hope I didn't worry/disappoint anyone too much.

The above pics are things friends/family shared with me on social media or purchased for me after surgery. I loved them and wanted to share them here. Below you'll find my immediately post-operative pictures (My incisions were closed with dissolving stitches and surgical glue). I'll try to post some current ones soon so you can see the progression. Thank you for reading, and good luck to you all.

Tuesday, May 8, 2012

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Wednesday, April 25, 2012

Six Days since surgery. Scheduled to have stim turned on tomorrow. Hoping to feel well enough to blog everyone up to date soon.

Thursday, April 19, 2012

Amy's surgery started @ 1:34 and I just got a beep she's headed to recovery... So 1:22 worth of surgery

Friday, April 6, 2012

Permanent surgery scheduled!

On Wednesday the 4th,  I had my consult with the neurosurgeon who will be performing the permanent implant procedure. My wonderful St. Jude rep met me at the appointment and we talked with the surgeon together. She was very helpful in the discussion regarding number and placement of leads and pulse generator as well as providing excellent moral support.

The appointment started with a medical assistant taking vitals. I was then met by the Nurse Practitioner who did a basic physical exam and took a bit of medical history in regards to my headaches. The surgeon then came in and after a couple of questions, we were discussing the details of the surgery. I was so relieved there was no hesitation on his part as to whether or not to proceed.

He let me know that he would be out of the office for a couple of weeks for a conference (Otherwise we could have scheduled it sooner) Although the 51 days since my trial was removed has seemed to last far longer, I'm not complaining about the fact that I only have to wait two more weeks!

The plan is for two leads on the right side, one above and one at the level of the mastoid. The pulse generator will be placed on the right side in the infraclavicular area. He explained to me that a day or two before the surgery, I would be scheduled for a final pre-op appointment for last minute blood work, chest x-ray, etc. He let me know that he was sending the request to his surgical scheduling person and that she would be contacting me to finalize the date.

I picked up my visit summary paperwork at the desk on the way out, and they informed me that I should be hearing from the scheduler by the following Tuesday. She called me the following day! My surgery is officially scheduled for April 19th at 9:30am. My pre-op visit is the day before at 11:00.

It doesn't quite feel real yet. But, I'm sure that it won't for a few more days. My plans over the next couple of weeks include slowly getting my house cleaned for the recovery period, Gathering volunteers to help out after surgery, Stocking the house with groceries, and general pre-cuperation.

I can't help but feel that the support of everyone in my life has played a major role in getting to this point. So, a sincere thank you to all.

I'll post again after the pre-op visit.

Wednesday, March 21, 2012

Pre-Op Consultation Postponed

So, the Friday before my consult was scheduled, I received a call from the surgeon's office requesting that I obtain copies of the images from my previous Brain and Neck MRIs. Even though they are over three years old, and the surgeon will be sending me for a recent MRI as part of my pre-op testing, they let me know that he would want to look at them prior to my surgery to get a better plan of action for the lead placement planning. So, if you are in this process, you may want to do the same to be prepared and avoid last minute requests and driving.

I got everything on CD that afternoon and was prepared for my Monday morning consult...

On the day of my appointment I received a call that my surgeon had been called in for an emergency surgery, and I have had to reschedule for April 4th. Though I have to admit, I was pretty disappointed (That morning's pain level didn't help any), I quickly had to focus on the fact that 1. Someone needed him more than I did at that moment, and I hope they had the best outcome possible in their situation. 2. I am not dealing with the unfortunate insurance denial issues I see every day with other folks in my situation. and 3. I've dealt with this for years, what is a few more weeks for the possibility of lifelong relief and improvement.

So, keeping my head to speak...and I'll let you all know what happens in April.

Wednesday, February 29, 2012

Awaiting my consult appointment

After my successful trial, I have an appointment on March 19th with the neurosurgeon who will be performing the permanent implant. My surgery will be scheduled at that appointment for sometime within the two weeks following.

I apologize for not posting very often. I've been at an increased pain level since the trial was removed and haven't been in front of the computer much.

I received a packet of information from the surgeon that I've been asked to fill out and hand carry to my appointment. Other than that, not much information.

I'll post again after my appointment unless something of note comes up.


Wrote this little piece with homage to Iron Maiden's "Number of the Beast"...

Gnome who stabs and pokes at me
for the gnomies stab the head with wrath
because they know their time is short.
Let him who hath understanding deaden the nerves of my 'ead
for it is a burning bundle
a bundle of sick, hurty, and sicky sick.

Saturday, February 18, 2012

Trial - afternoon of day 5 and the aftermath

It has been a few days since the removal of my trial, so I apologize if I leave anything out.

My appointment was Tuesday at 11:15am. The trial removal really was a simple procedure. I arrived at the doctor's office and was escorted to a standard visit room. The St. Jude rep was there to download my program data and we discussed my journal a bit and he collected it. The doctor came in a few moments later and we discussed the success of my experience and he explained the next steps toward my permanent implant.

He explained that after his office completes the dictation and notes of my trial, they will be sent to the neurosurgeon he is referring me to. As soon as they can, they will schedule me for the consult, and then we can schedule a surgical date. This surgeon is extremely busy, so I am probably looking at about a month wait.

The doctor began the removal. He un-taped everything (this was probably the worst part) he cleansed the area with Betadine solution and with gloved hands, held the leads, placed one hand on the back of my head and asked me to take a deep breath and hold it. He pulled the leads free. There really wasn't any pain to speak of and only about a second of discomfort. It just felt odd. My friend who had driven me to the appointment asked what it felt like, and there was really no explanation better than, "It felt like wires being pulled out of my head." So, I know that isn't helpful...but it felt as I expected it to.

He placed a piece of gauze dressing over the site, and taped it in place. He gave me a prescription for antibiotic ointment which I was supposed to apply  3 times a day for 5 days... I was not able to do this, as the ointment is in a mineral/petroleum base which I am allergic to. But it seems to be doing fine without it.

I asked when I could shower...he told me I needed to finish my antibiotics (I had 2 days remaining) and wait for the site to fully scab. So, I finally got to shower last night... It was probably the only plus side to giving up the trial unit.

The day after the leads were removed, my boyfriend changed the dressing and snapped a photo. As you can see, the "vampire bite" as we are calling it, had not quite scabbed enough for a shower, but in the second picture, taken today, you can see the punctures are barely visible and I no longer need a dressing. The purple lines you see are leftover marker from the procedure.

Tuesday, February 14, 2012

Trial Day Three, Four, and the morning of Five

I'm sorry I didn't post sooner, but I was busy enjoying my week with reduced pain!
I've been surrounded by my friends who have been here to help me out with meals, etc. and I'm glad that I felt so good they were mostly social visits with a few tasks here and there. My cheeks actually got a bit sore from smiling yesterday.

As far as the details of the trial...I know that it isn't placebo because of Sunday morning. I woke up about 6am to use the bathroom, and went back to bed because I was still a bit tired. I woke up around 10am with my usual headache at about a 4-5 on the pain scale. I didn't know if it was because of the program I was using so I pulled the control out of my waist pack (which I forgot to mention was another item my St. Jude rep gave me for the trial to hold everything comfortably) when I checked it, I realized the battery had died while I was sleeping! I changed the battery, and about an hour later, I was good again.

I've had some mild (2-3) headache pain on the right side above my eye, which changing the occipital stimulation would help sometimes and not really help other times. This may also be rebound headache from the narcotic painkillers I'm taking for surgical discomfort. Either way, I'll take it gladly over what I was dealing with before.


I was given homework by my rep, to do a few things that would normally exacerbate my headache. One task Aaron and I chose, was to go to our local pub for a drink (non-alcoholic of course) and conversation with friends for about an hour...with live, albeit acoustic, music in the background. This experiment went well, as we left because of somewhere else we needed to be and not because I was in too much pain to stay!

The second test was one about which I am very excited...I was able to read a couple of chapters in a book! "Makers" by Cory Doctorow for anyone interested. I only had the slightest bit of eye strain headache, which a friend pointed out could even be lack of practice. :) I was so happy to be curled up on my couch with a cup of hot tea, a blanket, and a book.

Today is trial removal day. Not looking to forward to saying goodbye. Specifically, I've gotten spoiled to waking up in the morning without a headache. I just have to focus on the fact that it puts me one step closer the the permanent.

Wish me luck.

Saturday, February 11, 2012

Trial Day Two

This morning...

Well, let me start instead with my usual mornings. They suck. Big time. Regardless of whether or not I had a good night's sleep...or a bad headache day the night before...mornings are painful. I wake up with a 10. It takes a while each day for me to overcome and function with a headache that I can get to a 3 or 4 baseline of operation. And on days where I am awakened before I'm ready...say, by a phonecall or something...I'm pretty much at a 6 or worse for the rest of the day. But not today...

After an amazingly restful sleep...
This morning, I was awakened by the doorbell. It was the Jehova's Witnesses. When the doorbell rang, I quickly got up off of the couch (Which would have normally caused a pain and dizziness that would have put me right back down...) And this pain would have put whoever was on the other side of that door immediately on my bad side. I answered the door.  The ladies were quite apologetic for waking me up, and said they would only take a moment since I wasn't expecting them. She proceeded to hand me this pamphlet, and she shared a Bible verse with me. Now, I'm not Christian, but I thought the theme of her visit, the elimination of pain and suffering, and the related verse humorously appropriate.

Though I feel that a certain amount of pain is a necessary element of life, she then asked me if I thought I could foresee a world without pain...I answered simply, "I sure hope so."

It was just amazing to wake up without feeling like I was just hit in the head with a cinder block. When I woke up, the only issue was a bit of swelling. (I am prone to waking up puffy anyway, so with the added issue of yesterday's prodding, this was to be expected) The swelling had caused a bit of tension on the small amount of slack in the lead wires when it was taped at the hospital. So, when my St. Jude rep called to check in on me, I asked her about this. We gently lifted the tape on my chest where the additional lead wire was coiled up and pulled out another inch of slack and re-taped it and all was good. The longer I was awake, the more the swelling receded. And there was no fever or any other signs of infection with the swelling, so I wasn't concerned about it. This was discussed when my doctor also called to check in on me and my progress. 

The rest of the day has been really good. I'm getting about a 80-90% reduction in my headache pain overall. Large portions of my day have actually been headache-free! I often, with a dark sense of humor, turn to Aaron and tell him, "I have a headache." to which he responds, "Amy, you always have a headache." We both got a bit emotional today when I said, "Aaron...I don't have a headache."

I didn't need to take a painkiller for surgical discomfort until about 6:30pm. And even then, it was just starting to get tender and I didn't want it to get worse before I had a handle on it. I'm getting used to the different stimulation channels which they programmed, which ones I like, ones I don't care for as much. I've noticed that if my headache starts to break through, I just have to change the channel and I'm good.

So far, the reduced pain has helped reduce my standard nausea, but I am still getting the HC related tearing in my right eye. (I don't think anyone told my eye that I don't have a headache atm and it doesn't have to be so sad.)

I'm pretty mobile today. Aside from the limited mobility from the cumbersome wires, tape, etc. and not wanting to dislodge the leads, I feel wonderful. Earlier today, I even would have loved to go for a short walk. A friend stopped by who had volunteered to make us dinner this evening, and brought us a lovely meal. I'm now sated, out of pain, and this evening like last night, I am feeling like I could lie down and easily find sleep. I think my body is like, "Oh, we don't have a headache...whew...let's relax!" I'm so not looking forward to the end of this trial and the wait on the road to permanence.

So end of day 2, So far so good. :)

Oh yeah..took a sponge bath earlier so I feel a bit more refreshed. I think not being able to get wet is something I underestimated the impact of during the trial.

Assimilation Successful- Trial Day One

Yesterday I received my trial leads and device.

I arrived at the Surgical Center with my mother about 9:45am for a 10:00am check-in. A few minutes after signing in at the window, they called my name to come back. I was sent for a urine pregnancy test (standard for women of childbearing age) and shown to my bed. I was then asked to change into a hospital gown (Everything off except the underwear outfit) and given a bin to place my personal belongings in. The RN started my IV and added antibiotics. A blood-pressure cuff was placed on my arm and pulse oximeter on my finger. The RN periodically took my temperature and checked other vital signs. Each team member individually introduced themselves as they asked me the standard questions and explained their role in the procedure as I signed release forms.

A few of these folks were: The Anesthesia Nurse, who explained what medications they would be giving me and how I would be partially sedated, yet alert enough to answer questions and be aware of voices and activities in the room. Her job would be to keep me as comfortable as possible. (at which she did an amazing job). The Doctor himself, went over the procedure again and allowed me to ask any questions I had. My St. Jude representative and her colleague both explained the equipment, showed me examples of what they'd be using, how it would all come together, and gave me my goals for the trial. (To read a bit, walk around somewhere...things that would usually exacerbate my headache.) The X-ray tech, a few other nurses, and even the recovery nurse. Overall, a fabulous team of folks who were no less than awesome at every step of the way. (Even went out to the waiting room and relayed messages to my mother for me when I was concerned she might be worrying if I was in surgery yet.)

Once all of the actors were in place, they show began. The  Anesthesia Nurse added some Versed to my IV to relax me for the ride into the O.R. and we were off. We pretty much all entered the operating room as a group and they all went about to buzzing around like bees in a busy hive.

I was asked to lie face down on a table with a large wedge shaped cushion and a massage table-like headrest. *My only issue and my biggest discomfort during the procedure was being just a bit too short for this setup, and the fact that I have ample breasts which refused to cooperate and find a comfortable place to hang out. So, they were a bit squished and causing discomfort, but I pretty much had to ignore it so I could remain still and calm.

A nasal cannula was placed for oxygen, and the doctor then started feeling for landmarks around my head and drawing guidelines with a marker. He called someone with clippers over to shave a small area around the occipital ridge. (So, that meant losing the bottom of my mohawk...looks like once this comes out, I'll be shaving my head completely...which doesn't bother me at all, but they still apologized to me afterward.) He removed the clippered hair with tape like a lint roller.

Next, they placed towels around my face and put cotton into my ears so the Betadine solution wouldn't run into my face (They were so considerate and often checked in to make sure I was doing ok) They then cleaned the entire workspace on the back of my head down to my shoulder blade area...even warning, "This is going to be cold."

The next thing I was aware of was just some fuzzy discussion among the team and some slight pressure here and there, but I was perfectly comfortable aside from my squished chest. Then the doctor and St. Jude rep were asking me where I felt the stimulation of the first lead and if it was in the headache area. Then they went about the business of inserting the second lead and repeated the questions for the second. They were both placed on the right side, one more occipital and one slightly higher behind my ear. Then they placed steri strips to hold the leads in place, and taped everything down. The leads were connected to the small boxes which connect the cables for the control unit leaving a small amount of slack for head movement and everything was taped in a package near my shoulder with the cables exiting the bottom to plug into the controller.

I was transferred back to the bed and wheeled into recovery. I was alert fairly quickly and I was told I had made it look easy and everything had gone smoothly.

The St. Jude representatives came to my bedside and began programming the unit, making sure to discuss each sensation and amplitude with me to ensure I'd have good options to play with when I got home. During this process, my mother was able to come in and watch. I was given a box which contained a cheat sheet for the controls, extra batteries, (The trial system uses 9-volts) a journal to record my progress for later discussions at my follow up, and a booklet about the system with dos and don'ts and a DVD. The materials that accompany the system are obviously aimed at back and other pain patients, but the info is fairly adaptable. My rep gave me her card with contact info (We'd already been texting and staying in touch, but just in case...) and let me know she'd call to check in with me but if I had any questions to call her and not wait for her call.

The recovery nurse allowed me to sit up and got me a juice of choice, which I appreciated because I had a pretty strong medicine aftertaste in my mouth from the IV meds.

The doctor came in to check on me, gave me my prescriptions, (Antibiotics, pain killers for surgical pain) a card for my removal appointment and follow-up (Which is Tuesday, making this a 5 day trial) He gave me his weekend contact info and let me know he'd be in touch to check in on me.

The nurse came back and gave me discharge instructions (basic things like don't get things wet, return to normal medications, etc.) and began the process of disconnecting my vitals equipment and removing my IV so I could get dressed. My mother assisted me in getting my shirt and pants on (I had worn a tank and yoga pants to make things easy) and I was discharged to leave. My mom brought the car around and the nurse walked me out.

The drive to my Mom's house wasn't bad at all. I was ok with bumps and turns. I only asked that she avoid braking hard as it caused me to tense up and hurt a bit.

The headache relief was pretty much instant. I played around with the programs and found one that I liked... I have noticed that when I change the program and turn up the amplitude to where I would like it...I can feel the stimulation (The tingling or massaging sensation...which is quite pleasant) for about 5 minutes and even tough I acclimate to it and it seems to not be as evident of a sensation, it still provides relief. I like this because then it isn't a distracting replacement for pain, but truly a relief.

My mom got me some lunch and picked up my RXs. I took a Percocet, my usual nausea medication, and an antibiotic. The Percocet for surgical discomfort (I would say pain...but in comparison to everyday, this doesn't deserve that title). Lucky for me, the use of painkillers doesn't interfere with my trial, since narcotic pain relievers don't touch my HC headaches.

So, with medication alleviating the surgical discomfort and the stimulation handling the headache...I felt WAY TO GOOD to be encumbered by all of these wires and tape. :)

Aaron picked me up from my Mom's house when he got off of work, and we headed home. I was smiling and we both got a bit emotional at the words "I don't have a headache." We sat on the couch to watch The Big Bang Theory on DVR and after one episode, I let him know I wanted to go to sleep....BUT for the first time in longer than I can remember...I didn't want to sleep to escape my headache, or because pain had kept me up to the point of exhaustion. I wanted to sleep because I didn't have a headache, and I was calm, blissful, and more relaxed than I could remember being in the past three years.

I'm so optimistic for the future. I had to get up early in the morning for a surgical procedure...and it was one of the best days ever! :)

Friday, February 10, 2012

This is Aaron, just got word from Amy, all went well in recovery

Tuesday, February 7, 2012

3 Days to go

Yesterday I had my pre-op blood-work drawn thanks to a friend who was able to take time out of his day to be my chauffeur.

When I got home, I thought it would be a good idea to call the Doctor's office and request that any prescriptions I'll be receiving for the trial, antibiotics, painkillers, etc. might be called in to the pharmacy in advance so I can have them ready to go as opposed to adding another errand that day. The Doctor was out of the office yesterday, so his medical assistant said she would get back to me.

Later in the day, when my phone rang and I saw it was the Doctor's office, I assumed it would be regarding my earlier call. But, it wasn't. She told me there was a scheduling issue with the anesthesia nurses, and they would have to reschedule my...(At this point full panic started to set in and my heart began to sink)...procedure "time". WHEW, not the date. And it turns out, it is now in the morning instead of the afternoon. I'm completely OK with that. It also means less hours I have to go awake without eating beforehand. I sent a quick text to confirm the time change with my St. Jude rep and all was good there. She let me know she'd be arriving early to talk to me about a few things before the procedure.

As I was typing this, the MA called and let me know the Doctor would prefer to give me the prescriptions the day of the procedure. - Oh well, not that big of a deal, I was really just trying to avoid that stop on the way home. My Mom and sister are driving me that day, and I had hoped to make it as streamline as possible.

So, the next three days will be spent spending some quality pre-cuperating time with those close to me and some last minute grocery shopping.

Still excited/nervous/excited/nervous/excited.

On the headache front- The past month has been worse than usual. More couch days per week than I've had in a while (With a menstrual migraine tossed into the mix for added fun). There are a few things I can attribute this to...but I've also noticed it is somewhat of a pre-stim trend. I think the head gnomes know what's coming and they're not happy about it. Laughter, physical activity, and high emotion can exacerbate my headache, so I'm sure one factor here is the stress, anxiety, hope, and roller-coaster of other feelings that go along with the possibility of effective treatment. Either way, it is making the time crawl... Friday can't arrive soon enough for me.

I've joined and have been following posts in the Occipital Nerve Stimulation group on Facebook. Great group of like-situation folks for Q&A, sharing, and general support. It is bittersweet as well, with the common thread of insurance denials, appeals, and hope of eventual approvals and pain, recovery, and relief. But, nevertheless, another great resource for which I'm grateful.

Saturday, February 4, 2012

This is a test mobile post to ensure Aaron will be able to post updates about my condition if I'm not up to it.

Tuesday, January 24, 2012

Seventeen Days to go until the Trial

and... It almost seems real. I am rapidly cycling between Disneyland-level excitement and Internally lecturing myself on not getting my hopes up. Trying to remember there is a reason we do a trial. But, I'm naturally a realistic optimist and after so many failed treatments, it is tough.

Real world preparation has begun. I've made the appointment for my pre-op blood work, and over the course of the past few days, I've tackled groceries, house-cleaning, and laundry... early nesting. These things are usually difficult tasks for me anyway, but I fought extra hard through the pain and nausea because I know it will make things easier for me and the folks who will be helping me out during the trial. Speaking of help...

I took the advice of a fellow blogger, and have set up a site here to allow my friends and family to help out with meal preparation, general assistance, and visits during the trial. I'm not sure how I will feel, and I know I'll probably need more assistance after a permanent implant surgery...But I figure if nothing else, we'll just have quality time if I'm more self sufficient than not. So I guess it is a trial run for ONS and this system. I'm overwhelmed by the absolutely fantabulous people who surround me and continue to support and rally around me through this craziness. I couldn't be luckier when it comes to mah peeps.

So, there probably won't be much more to post until February 10th...I'll just be here waiting impatiently. Feel free to bug me with comments, questions, suggestions, etc.

Wednesday, January 11, 2012


From reading blogs, taking notes, talking with people, and from that moment right before you think you can sleep that your brain decides it is going to start making lists and being inquisitive...I have made a list of questions to ask the professionals. Some have been answered by my St. Jude rep. Others will have to wait for the doctor, and then some yet will wait for the neurosurgeon performing the permanent implant if the trial works out. I wanted to post them here for both the purpose of helping future recipients, as well as to get feedback from stim veterans who may have additional questions I should look into.
* Those applicable to the trial

  • * What is the name/model of the stimulator I will be receiving and how will it differ from the trial?
  • * Will a representative be present during the procedure?
    I was told my rep would be at my appointment, though I was made aware they work as a team and only differ in personality not skill and if she couldn't make it for any reason, a colleague would be there in her stead.
  • Details of surgeon who will perform the permanent implantation and how far out are they scheduling?
    I was able to find out this info. Currently, his scheduling is a few months out.
  • Where will the IPG be placed and why? (Abdomen, Chest, Buttock, etc)
    This is something I will discuss with the neurosurgeon. Though there are equally good/neg points for each location, and I'm finding a lot of this decision comes down to personal choice.
  • Will the battery be rechargeable or non-rechargeable and what is the expected lifespan?
    The battery will require regular charging depending on usage and last anywhere from 5-10 years based on how much stimulation is required on a regular basis.
  • Will there be stress loops added in the wire slack for the leads?
  • Will Round or Paddle leads be used?
    For the trial the leads will be round, as they are inserted via a needle delivery system. The type may change for the final procedure.
  • * What type of anasthesia/twilight sedation will be used during trial and/or implant surgery?
    (Basically, what will I be on, aware of, and why.)
    I was told Propofol would be used during the trial. I'll find out more that morning.
  • * Post surgical pain control?
    (Making sure this is something that is A.Effective and B.I can tolerate as well as when I will receive the RX to possibly have it ahead of time)
  • *  Will I be given prophylactic antibiotics?
    (again checking whether this can be filled ahead of time)
  • *  Wound care?
    (Including obtaining supplies and what can be provided as opposed to purchased)
  • * What will my physical limitations be?
  • * What is my expected healing as well as recovery time?
  • Has the doctor/should the doctor have ordered anything that I need to be sure I have before leaving the hospital?
  • * Will any/all questions regarding programming of the unit and how to change it/turn stim on-off or similar items are covered, understood, or written down before leaving?
    (Also including what actions, security gates, microwaves, etc., should I be concerned about)
    The rep from St. Jude will make sure there is sufficient working knowledge for the trial period.
I will revisit this list of questions later to fill in the blanks.

On a sidenote: Though I initially would have liked my trial sooner, I'm glad I have a few weeks yet. I have developed the sniffles and a sore throat. (Probably because the only think I really need to do between now and then is NOT GET SICK) Here's hoping it is just a cold that passes quickly.

Head Gnomes: The Origin Story - or - The boring background of my endless headache

This post can be skipped. It is simply a history of how my headaches started and how I came to my decision to try ONSTIM.

In 2008, these gnomes armed with pickaxes and ice-picks took up residence in my head (Or at least that is what I thought...) Doctors didn't completely agree with my self-diagnosis.

Tuesday, January 10, 2012

From Discussion to Decision

After my headache specialist and I exhausted all other options and added the tag "drug resistant" to my diagnosis, we discussed the possibility of Occipital Nerve Stimulation again. I personally didn't want to succumb to surgical intervention, but never ruled it out as a possibility. I knew it was out there, but definitely wanted to try everything else first. The time came when the "We can't promise anything", "Not a cure.", "Not 100% relief", "May not work for you" surgical option sounded like a damn fine idea.

At that point, my doctor arranged for me to meet a previous ONSTIM recipient as well as a representative from St. Jude Medical for education and Q&A time. Both of these encounters almost immediately cemented my choice to proceed.

The next step was to meet with the Pain Management specialist within the practice. I had an appointment with his colleague and after that appointment it was determined I would be a good candidate and we moved on to the next step...Psychiatric Evaluation.

Luckily, the Psychologist is also a member of the same Institution so scheduling wasn't difficult and he knew exactly what test to perform and why. That visit consisted of some one on one Q&A and an electronically administered test based on the Minnesota Multiphasic Personality Inventory or MMPI. It had a little over 300 questions and was made up of short True or False statements (whether you agree with the statement or disagree). I took about 25 minutes to complete this (It can take up to three hours) I think a history of online quizzes helped me to finish a little quicker...

After the Pain Mgt. Doctor, Dr. P, received the results of the test, he and I had an appointment to discuss the trial. He informed me that I was psychologically cleared, (Apparently, I'm just crazy enough to have wires in my head), gave me pre-op instructions (Mostly what drugs I couldn't take prior and when I needed to stop food intake) He also gave me my pre-op blood work order which I will need to complete a couple of days prior to my appointment and we talked about my new haircut. He explained how they would need to shave a small section of my hair, and he let me know how a short haircut would be helpful (but not necessary). I let him know that it was my intention to make his job easier by preparing with a mohawk. I figured since I'll have sutures and wires and I won't be able to shower for a few days, that I might as well make it more convenient and have fun with it at the same time. I left my orders and his staff was going to make sure all of the insurance requirements were taken care of.

That night, Aaron helped me with my hair...



That day, I also spoke to my St. Jude rep and talked about where we were in the process.

Over the last few days, in addition to them being worse than usual headache days, they were full of anxiousness knowing I'd soon have a date scheduled. I've spent this time reading blogs from other people who have had a simulator and learning from their experiences. I am so grateful to them, as this isn't commonplace yet, there aren't official resources for patients outside of reading studies and marketing materials. I hope that my experience can help others as much as others have helped me thus far.

So today, I was scheduled. February 10th is when I will have my trial performed. I called and had a short conversation with my St. Jude Rep Jill and she answered questions I had compiled from reading blogs and jotting them down. I still have a few questions left for the doctor(s) but she helped out quite a bit. Now I'm just impatient (Trying to keep my hopes of success at bay) which is easier said than done. I have to have enough faith in this to continue but not so much that I inadvertently convince myself that the trial does something it doesn't (I've seen where that ends, and it isn't good) 

I'm excited, a bit nervous (more of the outcome of the trial than the procedure), anxious, impatient, and hopeful, which is really the most important part...because it is nice to have something to be hopeful about.

So, I'll update as often as ONSTIM related events occur, or when I think of pertinent info to share. 

Monday, January 9, 2012

How my Head Gnomes attack

I know everyone's pain is different. If you are reading this because you are someone looking into ONSTIM, I thought it might help to explain my headache for comparison purposes. Or if you know me and are just curious.

My headache condition is unremitting Hemicrania Continua.
It is constant. My baseline of pain is a 3 or 4 on the 1-10 scale with exacerbation periods ranging from 6-10. My pain is on the right side of my head with the very rare left side referred pain. It shifts between the Occipital area on the back of my head to the supraorbital area above my eye with the most common manifestation being in the auriculotemporal area near my ear/temple. It is difficult to describe the pain. I guess the easiest would be with words like achy, tight, diffused, pressing, and occasionally burning.

In addition to the base headache, I have intermittent jabbing, stabbing, poking pain which is common with HC. This pain is where the Head Gnomes with Pickaxes and Ice-picks analogy originated.

My headache is a 10 the moment I wake. It takes anywhere from 15 minutes to 2 hours for it to slowly subside to its usual 4. My right eyelid droops and that eye sometimes feels like there is sand in it and is often sealed shut when I wake due to the eye watering associated with HC. (We like to say my right eye is sad.) I also get nasal congestion on the affected side at times when the headache is worse. Having a daily headache has caused neck issues, and often the pain in my head can travel from the worst point, down my neck, and into my shoulder blade.

A Bad Day

(I'm going to try to focus more on the headache itself and not the related cognitive difficulties is causes)

Things that make my headache worse include being overheated, (summers are worse for me) being tired, (which is easy to do considering the headache has caused horrible insomnia and an inability to sleep well from the pain itself), any physical activities from getting groceries to yoga (which has caused quite a lot of weight gain due to the sedentary lifestyle chronic pain causes), stress and anxiety, sound and lighting conditions can but rarely affect the severity of my headache. Doing too much of anything in a day, week, the biggest factor in my pain level. I have seen this explained in books and websites using analogies of allotted items such as "energy marbles" you have for a specific only have a finite number and each activity you do reduces that number and your recovery or payback for using them is determined by how many you have left. Other times, the pain is more severe for no apparent reason and can stay that way for days... Basically, I have bad days, and better days, and I try my best to keep the bad days to a minimum by controlling what I can.