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  The leads were fed through the hollow needles for placement and then the needles were withdrawn.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.