This is from a journal which started to try to document the experiment but didn't have time to write in like 1'D hoped.
December 6, 2010
Here I sit in the family van, being carried closer and closer to a fate which seems less and less certain. Today they put in the trial leads so I can see how the stimulator works and whether it will relieve my pain.
I don't have reservations about the choice to do the trial, but I'm still very nervous. It is hard to think only of the here and now when my brain wants to rush ahead to all of the details of the procedure which I cannot picture.
I am also deeply excited about this procedure because it could really be the first step toward controlling my pain! That hope is almost too wonderful to contemplate, but it's a lot healthier than what-ifs and how-wills.
Ways I know I'm nervous:
1. Butterflies in the stomach.
2. Crazy dreams last night
3. being afraid to reach out to my friends.
4. Huge migraine yesterday.
5. Inability to contract Braille correctly.
Now I wait for my doctor and the Medtronics representative. It's hard because I am alone in a doctor's room and am scared. "Just get it over with," I feel like screaming, but I don't because I try to be a good patient.
I've brought my BrailleNote to take notes and, when possible, write in this journal.
The leads are in. I have pain relief. It's going to take a while to get used to this sensation; my pain has been replaced by this tingly sensation. It does feel quite weird.
Those were my as you get them impressions. I'll try to fill in a bit more now.
The first friendly voice I heard entering the room was the Medtronics rep. She really knew her trade, a nurse by profession, her job was to make the machine work and cover my pain comfortably, teach me about the unit and also provide support before, during and after the procedure. She explained how the device works, just like rubbing a sore spot to make it feel better, but since this is CRPS, the extra stimulation is in the spine to block pain signals.
We spent the time waiting for the doctor talking about the stimulator controls or the patient programmer... I was surprised at how tactile the buttons were, no Braille or other tactile markings were necessary. The representative was patient and helped me greatly.
A nurse hooked me up to an IV and I was given a dose of antibiotics. My doctor went over the benefits and risks of the procedure and I was taken into the procedure room.
I was definitely scared about the procedure, and eventually was given some sedation as well as pain medication to help with the pain of inserting the leads and calm me down. The nurse was wonderful and we talked about various topics to help me stay distracted.
Once the leads were placed, it was time to confirm that the stimulation covered my painful areas. It did, with a bit of adjusting, and then it was time to tape me up so the leads wouldn’t move. Once that was done I was gently guided off the table and into wheeling recliner. The Medtronics representative met with me again and refined the stimulation so it was comfortable. I remember how exciting it was that she could touch my leg without causing me pain. That was truly cool!
Mom came back to the recovery room and we went over the controls again and then it was the moment of truth. Could I really walk with Julio and have the stimulator on? Amazingly, I could, and did. I almost cried at the feeling of not having pain in my feet and leg.
On Tuesday, I had class. I didn’t take my crutch, but I didn’t need it. This was the first time, since 2006 that I could work Julio without a walking aid of some sort. People noticed a huge change in my demeanor, I seemed less anxious and upset. I felt great, with good control of my pain I felt ready to take on the world.
I was so sad to give the unit up. It was really hard to go back to the pain again. I meet with the surgeon who will put the permanent unit in on January 3 so I don’t have a surgery date yet.