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.