Week Two Post-Op

At the beginning of week 2, I had my first post-op appointment. A St. Jude rep met me at the doctor to reprogram the stimulator (a different rep from the one who programmed me in the hospital after surgery) and a nurse examined my incisions.

The St. Jude rep was able to explain why it was so painful to turn the stimulator on. There are 8 contact points on each lead, and with each program you can specify which contact points get stimulation. The programs I was set up with in the hospital only used one contact point on each lead - which was the equivalent of someone just poking me hard in one spot on my head according to the rep. I was pretty irritated with that information because it didn't make sense. My head was already very sensitive from the surgery, so this type of stimulation was just downright painful.

The rep gave me 4 more programs to use. One issue we kept running into when programming the left lead (over my AT nerve) was that the contact points at the top of the lead cause my jaw to spasm when turned on. This irritates the trigeminal nerve and causes quite a bit of pain. Unfortunately, it's these contact points that enable the stimulation to cover my most sensitive area - my temple in front of the ear. As I continue to heal, it's slightly possible that this will stop happening. The trauma from the surgery causes fluid build up around the leads. Fluid is a conductor, so the stimulation you feel after surgery is more intense.

The rep also showed me how to charge the battery and advised that I charge it fully at least once a week.  I can charge it all at once or in several small increments of time. The first time I charged I had about a 1/3 of the battery power left, and it took me 50 minutes to fully charge it.  

The nurse that examined my incisions said everything was healing well. When I asked about the bump that formed under the top part of the right lead, she was encouraged that I had noticed some reduction in size throughout the first week. She told me to continue monitoring it and that they would check it again in 4 weeks. When I inquired about the tightness of the wires, which by that point had become very uncomfortable, she attributed it to swelling and asked if I had been wearing my cervical collar. I was nonplussed by this question. When I told her that I didn't know what she was talking about, she informed me that the hospital was supposed to give me a cervical collar when I left and that I was supposed to be wearing it during my recovery. After doing some digging of my own, it turns out my doctor never put in a request for the collar, so the hospital didn't give me one. I was incensed by this oversight and when I tried to contact the hospital to pick one up, they didn't know what to give me and couldn't get my doctor on the phone. Luckily, a friend of mine had one and let me borrow it.

Once I put it on, my neck pain immediately reduced and I no longer had the tugging pain on the leads. Because I've had several years of a mostly "bed rest" life, my neck muscles are very weak. After the surgery, I was sitting upright 24/7 trying to support my head. I have a natural forward head posture, and this posture put strain on the wires which in turn tugged on the leads, further irritating the discomfort there. So the cervical collar gave my neck muscles a much needed break and allowed me to hold my head in the correct position.

This is pretty much what I looked like sitting on 

the couch in my PJs with my cervical collar on. ;)

Even with the cervical collar and reprogramming, I still had a rough week with terrible headaches most of the time. I kept the stimulator on all the time and even though the stimulation was pleasant, it still didn't seem to be helping enough because I wasn't getting sufficient coverage. The doctor and St. Jude reps all stress that as I heal, I will start feeling better coverage because I'll be able to turn the unit up higher and they'll be able to program the stim better.

During week 2 I also had to start a mostly liquid diet. The left lead that covers the AT nerve is on the side of my head, just above my ear. That whole area was super sensitive, and when I chewed it irritated it more and caused headaches. So, from that moment on until today as I write this (almost 4 weeks post-op), I've been living on smoothies, creamy soups, and pureed foods. Here is my favorite smoothie recipe. It helps me get sufficient protein on this restricted diet.

Like in week one, I spent the whole time on the couch watching movies or on the massage table. Friends continued to visit bringing meals, which always helped take my mind off the pain. I still took my pain meds around the clock and used ice packs religiously.

Week One Post-Op

I'm breaking my recovery experience into blog posts by week.  This first post covers week 1 starting from the night I got home from the hospital.

The first night, I was pretty woozy from the anesthesia. I ate a little chicken noodle soup, took some pain medicine, and got set up on the couch. I stayed on the couch 24/7. I had to sit up when I slept, because lying down was impossible with the pain from the leads. I couldn't take any pressure on my head. The first 4 days went pretty well. I took my pain meds around the clock and the post-surgical pain was well-managed. My back and neck were sore from the tunneling of the wires, and my low back/hip was very sore and swollen. I kept ice packs on these areas regularly throughout each day which seemed to help with the discomfort. I didn't have any headache pain but did feel sore and tight where the incisions were. I didn't use the stimulator much because when I turned it on, I got very intense pain at one spot on each lead. On the end of the right lead, a bump formed underneath that was very sore to the touch. It seemed to be caused by post-op swelling.

I was able to shower and wash my hair after 48 hours, but washing my hair was very difficult. I gently squeezed shampoo into my hair - there was no scrubbing of the scalp. The dermabond used on the incisions kept them completely dry and protected.

By day 5, the numbness in my head had totally worn off and the swelling from the leads really started to hurt. On top of that, I got a headache. I still couldn't stand to have the stimulator on very high at all, but I kept it on as much as I could in hopes it would help the pain. The rep warned me that the stimulator would not help with post-op pain, so I figured I shouldn't worry that it didn't seem to be very effective.

The wires also seemed to tighten up around day 5 (which turned out to be due to the swelling around them). When I moved my head, the wires would pull on the leads. This really hurt, so I tried to stay as still as possible. I started spending a couple of hours a day face down on a massage table each day that a friend let me borrow. It was nice to be able to give my neck a break and to lie down. I usually dozed while on the massage table, a lucky break since I was sleeping so poorly.

I had quite a few visitors during that week. My boyfriend and I started a care calendar through Lotsa Helping Hands. This site is free and enables you to set up a calendar through which your friends and family can sign up to help with meals, visits, rides, errands, cleaning, etc. We were well fed during week 1 - a welcome break to my boyfriend who was taking care of me on his own while working full time. It was also nice for me to have visitors to break up the monotonous hours on the couch. I highly recommend using a site like this because your friends and family want to help, they just don't know what to do. Also it takes the pressure off of you to come up with ideas of how they can help by allowing them to sign up for what they want to do and when.

Bionic Powers Activate!

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I'm finally feeling up to posting about my experience during surgery, but I'll have to save my recovery experience for another day.  Today is 3 weeks since my permanent implant surgery was performed, and I'm still waiting for my Bionic Woman super powers to kick in.

On the day of the surgery, I was supposed to arrive at 2:30 with a surgery time of 4:00.  My doctor, however, is notoriously late so I figured it would be running an hour behind.  I was in for a surprise - I didn't actually go back to the OR until after 6 and the actual surgery didn't start until about 6:30. I was pretty stressed by that point because I was hungry and had way too much time by myself in pre-op to worry about the surgery.

I was given fentanyl (a powerful pain killer) in my IV before they wheeled me back to help begin the sedation process. I was put on a bed face-down that had a large hump in the middle, so that my stomach rested on it elevating my low back where the battery pack was being placed. My head rested in a face-cradle that was pretty uncomfortable, but I knew I would soon be in la-la-land, so I didn't mind much. They had to tape the nasal cannula to my face because it kept slipping out at that angle and they did a double prep (meaning they covered me in that iodine soap twice - it was so damn cold). They shaved some hair at the center and left side, but left enough on top so that it would cover the bald spots. But to be honest, at that point they could have shaved my whole head if they thought it would help my headaches. I had lost all sense of vanity.

After I was prepped, I was given Versed to augment the sedation, IV antibiotics, and lidocaine injections into my scalp to numb the area for the lead placement.  Hollow needles were driven under the scalp to place the leads much like the trial surgery. The battery pack can handle up to 4 leads and 16 contact points (each lead has either 4 or 8 contact points). The doc planned on using 3 leads - one 4 contact point (quatrode) near the left AT nerve, one 8 contact point (octrode) to cover the left occipital nerve (greater and lesser), and one 4 wide-placed contact point lead to cover the right occipital nerve (see diagram of nerves here). The St. Jude rep with us in the OR didn't have the 4 wide-placed lead, so he opted to use two octrodes instead. One octrode covers the left AT nerve and left lesser occipital nerve. The other octrode covers the left greater occipital nerve and right greater occipital nerve. I'm still not sure that this placement will cover all of my pain, a frustration I will discuss later.

Close-up picture of percutaneous octrode

After the leads were placed, the St. Jude rep turned on the stimulator to make sure I felt the stimulation in my head. After that, I was put under using propofol to implant the wires and battery pack. The good news is that the lead placement didn't hurt nearly as bad as it did during the trial, proving that I was not given enough sedation during the trial surgery. In fact, I barely remember the lead placement during the permanent surgery. The original plan was to make one incision on my head for lead placement, one small incision on my neck to help tunnel the wires down (no wire extender was needed because they make super long leads now that go down to your neck), and one incision on my low back/hip for battery placement. However, I'm a thin person and the doctor warned me that getting the wires down my back would be difficult because the skin doesn't have a lot of give, so additional "nicks" might be needed to give my skin more stretch. They use a hollow plastic tube to tunnel the wires from your neck to the low back. I ended up with two incisions on my head to place the leads, one incision at the base of my head and one on my neck to help get the wires down, a "nick" on my mid back, and the incision on my low back for the battery pack.

Comparison of battery pack to silver dollar

Battery pack features

I woke up as they wheeled me back to recovery. It was almost 8:00 by then. The nurse told me they had washed my hair because it was full of blood - something for which I was very grateful! The St. Jude rep walked me through using the remote for my stimulator, showed me briefly how to recharge my battery, and told me there was a magnet I could use to turn the unit on and off if I didn't have my remote. He also programmed the stimulator with 3 programs, but told me that they would be insufficient because I was still numb from surgery and they program based on your feedback. For example, he would turn on one lead and slowly increase the power until I felt the stimulation. He would continue to increase it until I told him what level was comfortable and then when it became uncomfortable. The rep also gave me my post-op instructions and told me they had used dermabond - a surgical glue - instead of bandages and stitches to close up my wounds. This meant I could take a shower and wash my hair as soon as 48 hours post-op and sponge baths on the front only until then! Also no bandages with surgical tape, which was fantastic because I'm allergic to the adhesive on surgical tape. I was warned not to bend, twist, lift anything over 5 pounds, reach, or move my neck around too much for 4-6 weeks. I made sure my boyfriend was present during all of this because I knew I wouldn't remember much due to the anesthesia-induced wooziness. I strongly suggest to anyone having this surgery that you have someone with you for this part as well. I was sent home with an antibiotic prescription and a prescription for additional pain medication for 2 weeks.

If you click here, you can see pictures of my incisions at 2 days post-op. Warning - if you have a weak stomach for incisions, you might not want to look. They are pretty benign considering there are no staples, but there is dried blood under the dermabond. Next up, I will discuss my recovery experience. It might take me a few days to get it all documented. I want to be very thorough. I also plan to create a list of supplies I found important to have on hand during my recovery for those planning to undergo ONS implantation. Until then, wishing everyone relief from their pain.

Healing Humor

I'm still healing and not ready to blog, but I wanted to share a Tumblr site I found that has provided some much needed humor during my recovery.  It's called Laughter is the Best Medicine.  It provides you with a template with a picture of a cat and allows you to add your own caption regarding chronic illness. Here is one submission that is very applicable today.

Enjoy your weekend.  Hoping to post about the surgery soon.

Post-Op Update

I just wanted to write a short post to report that the surgery went ok.  I'm still in pain and not up for blogging a full account of the procedure. The incisions are healing very well and I just got a good report from my doctor at my wound check appointment.  The stimulator is not programmed very well because we have to wait for the swelling to subside, so I'm still having headaches.  I'm hoping that in a few weeks I'll be healed enough to get the stimulator programmed to give me better coverage and pain relief.

Trial Stimulator

My trial was pretty miserable.  The lead implantation was very painful and I didn't have strong enough pain medication to deal with the post-surgical pain.  I'm not sure how typical my experience is - I have read other accounts where people had fairly comfortable and successful trials. I will describe my experience as candidly as possible, but remember that it is just my own unique set of circumstances.

First, I was not asleep when they implanted the leads.  I was given an injection of local anesthetic in my head and light sedation with IV Versed (anti-anxiety) and fentanyl (fast acting pain med), but I was still very aware.  None of my hair was shaved, and a very small incision was made at about left center of my head - around the occipital ridge.  Hollow needles were inserted into the incision and were driven under my scalp to make room for the leads.  The leads were fed through the hollow needles for placement and then the needles were withdrawn.  Two leads were placed - one on the left to cover my occipital and auriculotemporal (AT) nerve and one on the right to just cover the occipital nerve.  The needle placement under my scalp was incredibly painful.  I can't even imagine how bad it would have been if they had not given me fentanyl. I've had many conscious sedation surgeries where needles were poked all over my head and neck, and this was by far the worst.

The leads were attached to wires, which came out of the small incision in my head.  The wires were secured with stitches in my scalp so that they could not be easily displaced. The wires were then attached to a wire extender (small plastic box). The wire extender and wire slack was taped to my back. Almost half of my back was covered in bandages and tape to keep this area secure and dry.  I was left a little slack in the wires between my head and back so that I could move my head without displacing the leads.

Two small lengths of wire (resembling CAT-5 cables) emerged from my bandages to be plugged into the stimulator unit with battery source that clipped onto my waistband.  I was given 3 programs to start out with which I could adjust the amplitude and the balance of amplitude between the left and right leads.

The first 3 days were rough.  I didn't ask for additional pain meds (very bad idea - don't try this at home!) and what I did have on hand was barely making it manageable.  The post-surgical pain was so intense that I couldn't tell if the stimulator was helping.  I kept it on almost all the time, though, because I did prefer having it on rather than off.  I think it did help distract my brain from the post-surgical pain. An important fact to keep in mind is that the area of lead placement and stimulation are the same.  So, it's hard to tell how much relief you are getting from your headache after needles have been tunneled under your scalp.

This is the new pain schedule I had to adopt during the trial.
Courtesy of Hyperbole and a Half

My head hurt a lot - and it was difficult the first 3-4 days to determine whether I had a headache or just post-surgical inflammation pain.  Luckily, on day 4 I met with my rep from St. Jude (stimulator manufacturer) and she was able to add a few new programs that were more helpful for my pain patterns.   They activated other contact points on the leads that were not activated with the other programs, thus the stimulation coverage improved. (Note: Each trial lead has 8 contact points.) I then started to notice some pain relief.  It wasn't until the last 3 days of my trial that I was able to take a headache, apply a stimulator program, and see good results.

There were a few issues that kept me from satisfactory pain relief.  First, the lead placement did not effectively reach my AT nerves.  My pain there is very significant (around temples, just above the ear), and the lead did not give me relief in the area at all.  Second, the left lead shifted slightly, and began to cause pain if the stimulator amplitude was turned up past a very low level.  Thus, I wasn't able to increase the stimulation enough to tell if I had pain relief at the left occipital nerve. Luckily, the lead placement on the right was done very well and I received effective pain relief on that side.  The St. Jude rep later explained that surgeons sometimes do the lead placement differently on each side during the trial to find out which placement works best.

A couple of other things made the trial uncomfortable.  First, I couldn't sleep.  Any pressure on my scalp was unbearable, so I had to sleep sitting straight up.  This is not something I do well and I already suffer from insomnia, so I only got a few hours of displaced sleep throughout each night.  Sleeping on the couch also caused a lot of tension and pain in my neck.  It was hard to move my neck and head around because of the wires coming out of the open wound - any slight tug on them was painful. Additionally, because you have an open wound, they gave me antibiotics to take for 10 days.  They caused horrendous acid reflux - so much so that it became painful to even drink water.  Finally, I have a slight allergy to the adhesive used on bandages and medical tape.  That allergy turned out to not be so slight when half my back was covered in medical tape. The next morning after my trial implantation, my entire neck, shoulders, and upper back broke out into a rash and there was nothing I could do about it except to take Benadryl consistently until it was removed. So I was itchy and couldn't eat, sleep, or move much -all of which made me cranky.

I feel very lucky that I had my boyfriend to help care for me and that several friends came to visit with stacks of DVD's, magazines, flowers, and cards to keep me occupied. I spent almost every second of that week on the couch unable to move around, so the entertainment made it much more bearable.

By the end of the trial, I knew I wanted the permanent unit.  Even though the trial was imperfect, my surgeon discussed a few things with me before surgery that put my mind at ease. First, the permanent stimulator allows for 4 leads instead of 2, thus he could get better AT nerve coverage with the permanent unit.  Second, the wound on my head will be sewn up with the permanent and I won't have to contend with wires and open wounds that keep the post-surgical pain alive and well.  I could also tell that where the coverage was working with the trial implant (right occipital area), I was getting 60-70% pain relief.

After the trial leads were removed, I had the most blissful shower and washed my hair gently.  I was only allowed shallow baths during the trial so it was heaven.  The lead removal was not painful at all. It took about 2 weeks before my scalp began to lose its tenderness where the leads were. The surgery activated a flare of my chronic Epstein-Barr, so I had mild fevers for a few days after the trial and reduced energy for about 2 weeks.  My headaches came back with a vengeance about 3 days after the leads were removed and were much worse for  2 1/2 weeks.  My theory is that they were enhanced by the scalp tenderness from the trial surgery.

My permanent implant is scheduled for tomorrow, August 3.  I'm excited, nervous, and just ready to get it over with.  I'm having the battery pack implanted in my low back just above the buttocks.  I will have 3 incisions - one on my head for the leads, one in my neck to put in a wire extender, and one in my low back to put in the battery pack.  The recovery time is estimated at 4-6 weeks, but with my other health ailments I know it will take longer.  I'm ready for it, though.  My life has been on hold for over 2 years because of these headaches - I can take a couple of months of convalescence.

A Restricted Life - Part 2

As much as I hate not being able to do many of the things that I love, I work on being in a place of acceptance with those restrictions. I try to accept that for this period in my life, there are many things I can't do. I also have worked to find appreciation in other activities that I can perform. I can pet my cats, watch a DVD with my boyfriend in bed, go to the movies with a friend, meditate, read for short periods of time, and write this blog.

Acceptance and gratitude are major players in the management of my chronic illnesses.  Acceptance does not mean resignation - I still fight to get better all of the time. It just means being okay with where you're at right now.  As Buddhist author Pema Chodron writes in Talking to Ourselves, "It isn't the things that are happening to us that cause us to suffer, it's what we say to ourselves about the things that are happening." If I spend every minute of the day angry about the pain and my restrictions, all I do is cause more pain. Pain begets pain.

Gratitude doesn't take my headache away, but it keeps me from wallowing in the pain and increasing my suffering. I can be grateful for what I do have - a roof over my head, disability and Medicare, a wonderful boyfriend and caregiver, and some friends and family that help the best way that they can. It also involves looking at some of the wonderful things that have happened in my life because of my illness. I got to leave a job that made me miserable, I have met amazing women through support groups that make my life better just by being in their presence, I have developed deeper empathy and compassion for others, I have been able to explore other interests I never had time for before, and I have learned that I can be a human "being" and not a human "doing."

If I seem nonchalant about this practice, please believe that it's the hardest thing I've ever undertaken. It's hard to feel accepting or grateful stuck in a dark room most of the time curled up in bed with pain. Some days I can't get to that peaceful place; some days I can. When someone first told me I should be accepting and grateful of my life as a sick person, I kind of wanted to smack them. The phrase "Attitude of gratitude" made me throw up a little in my mouth. I wanted to scream, "What is good about being sick? Couldn't I have learned these lessons in another, less life-altering way?" But then I realized, this is my life whether I like it or not.  Why not make it easier by learning to accept that for today, I am sick. I might not always be sick, but for today I am and that's ok.

A Restricted Life - Part 1

I've spent most of my time blogging about the technical aspects of my headaches. The point I've really wanted to convey is the impact they have on my life.  This part is difficult, because I don't want to seem ungrateful for what I do have.  I'm not in any way trying to convey a "woe is me" message, because I know things could be worse.  I just want to describe what the pain has done to my life in a way that helps me reach out to other people dealing with this pain themselves.

If I had to describe the effect the headaches have had on my life in a nutshell, I'd say that they take away my choices. For example, I can't drive anymore.  The pain and medications make driving unsafe, so I only reserve it for going to doctor's appointments.  When I ride in the car, I get a terrible headache that lasts for days after only 15-20 minutes.   So, I feel kind of trapped.  I was used to the freedom to go anywhere I wanted and the adjustment has been tough.

Other activities that I used to do that are no longer on my list of possibilities (unless I want a headache):

• Knitting and crocheting - This one breaks my heart. It was one of the few hobbies I was able to retain after contracting CEBV.  I can no longer look down at my work without getting a headache.
• Sitting in uncomfortable chairs - This pretty much rules out hanging out with friends at a coffee shop, bar, or restaurant.  We pretty much just eat take-out.
• Yoga - Another heartbreaker.  Gentle hatha yoga was one of my respites from the pain of fibro.  I've tried kundalini, hatha, restorative, and yoga nidra and every time I get a headache.
• Talking on the phone - I do ok with a hands-free, but holding the phone to my face aggravates the trigeminal and occipital nerves.
• Sitting on the couch - After about 20 minutes on the couch, a headaches starts to form.
• Working at a computer - I can handle short bursts.  It takes me a couple of days to write and edit a post.
• Looking down to read a book
• Resting my head on a pillow or back of chair
• Anything that rattles the body - extended car rides, boat rides, etc.
• House cleaning - Ok, I never really liked doing this, but it's a necessity and I like a clean house.  Thankfully I live with a wonderful man that takes care of this now

I'm sure I will think of other things as time goes on, but this is the best I can come up with right now. I'm excited about the possibilities that await me with ONS.  Maybe I can knit my niece something beautiful for her first birthday and actually drive to her party 90 miles away without a headache. :)