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.

THE RETURN OF PAIN

I had friends sign up on a calendar to help me out during the trial, and even though I scheduled for a 7 day trial, my doctor only had me complete a 5-day trial. I didn't cancel those people for help with dinner, etc. for fear that I might need help if my headache returned quickly. I'm glad I didn't.

After my appointment, the friend who had driven me stopped to pick up the next volunteer and she offered to take the three of us to lunch. I was still feeling ok at that point, sans a slight headache above my right eye, so I agreed. As we headed out, my first sign of the impending headache was the return of my usual nausea. It came in a pretty strong wave before the worsening of any pain. I thought eating something might help, so we continued to the restaurant. We had a great lunch and as we were paying the bill, the headache started to get worse.

The pain didn't hit my like a ton of bricks as a feared, but rather slowly crept back and increased gradually and by the time I got home, it was back full force. I settled onto the couch and my friend stroked my head and kept me comfortable until I was able to relax there for a few hours. By dinner time, I was able to sit up and eat, but I was still in quite a bit of pain. I'm still not sure if it was any worse than it usually is, but after the 5 day break, it sure seemed like it.

Wednesday morning, I woke with the standard morning headache, and took a couple of hours and a cup of coffee to acclimate and sit up to have some conversation time with my friend who had taken the morning shift.
I spent most of the day on the couch and that evening had a difficult time eating dinner. The chewing of my salad increased my pain and I decided the entree would have to go into the refrigerator.

Thursday morning was pretty much the same, and I started to feel more normal by the evening. I think I just needed to regain the coping skills I've used over the past few years to function through the pain.

Today I am back to my basic operation. Wake up in pain, made some coffee, took a few hours in front of the television to get going and now, I'm finally comfortable enough to get this blog written. So, I'm pretty sure I just needed to get used to the headache again...well, as much as one can anyway.

On Monday, I'll call the doctor's office and see what progress has been made and where I stand on getting an appointment with the neurosurgeon. I'll post once I find out.

I am grateful for a super successful trial, and as Aaron said, I know the light at the end of the tunnel isn't a train.

I'm also so thankful to my friends and family who have been there for love, support, meal preparation, sponge baths, dishes, laundry, and stroking my head. I can't tell you how nice the additional assistance was...I'm a bit spoiled I think. And everyone let me know they will be back to help after the permanent procedure, for which I am additionally thankful.

I was also happy to see other successful trials which were pretty concurrent with my own of people in the Facebook group. I wish all of them speedy permanent procedures and the best of luck in their search for relief.