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my pain journal from my SCS trial
Here is pain journal that I kept after I had my spinal cord implant test. I hope it will help those of you who have asked me to transcribe it so you could read it.
The procedure was completed on Wednesday, 6/13, in the afternoon. It took about 2 hours because my pain doc changed lead placement a couple of times to get coverage on my low back. It was an uncomfortable but productive process. The Medtronic people (2) were there to help and to cheer me on. I was hooked up to an IV but was alert and walked out on my own “steam.” I was given 4 programs to work with by my Medtronic reps. That was GREAT! I eventually used them all to experiment with. I got up from the procedure table and was asked how I felt. 2 hours on my tummy and I felt no lower back pain! Pretty neat. I didn’t feel the stimulation in my lower back. I felt it in my thighs. But my back pain was gone. Not unusual, I was told. My lower back nerves were so badly damaged from surgery that I couldn’t “feel” the buzzing in that area but it still blocked the pain signals.
I went to work the next day for part of the day Thursday and just kinda got used to having the stimulator. Went back to the doc for a bit of an adjustment. Not painful. One of the leads had slipped a bit. I was tired but didn’t particularly feel bad. Hub and I went to the Varsity for a great lunch after seeing doc. Up to this point I didn’t start recording in my pain journal because I wanted to get used to the feeling of stimulation. It was a much deeper stimulation than my tens unit.
Friday-2nd full day into test…Woke up in the wee hours in tons of pain. Probably a reaction to messing with the leads. Could barely walk to bathroom. Back in bed, I turned on my stimulator on a low setting and went back to sleep. Got up later in the morning and felt much better. Went to Walmart to grocery shop since my doc told me to give the test a good try. What better than shopping at Walmart??? I did fine; very little pain so I decided to go to work half a day. Still felt good so I came home and tidied up a bit. So far only took 20 mgs hydrocodone. Back really held up. Pain levels mostly a 2.
Saturday-Worked on my stained glass while standing the entire time for 3 hours! Only needed 1-10mg tab of hydro. Back was tired by 4:30 and began to hurt (level at a 3) so I sat down and changed my programs for more pain coverage.
Sunday-Feeling pretty good all day. So far getting GOOD pain coverage but the not being able to bathe was a drag. Learned to do it in stages. First took a sitz bath for the waist down. Then out of the tub and sponged waist up. Then to the kitchen sink where I used sprayer to wash hair so I didn’t have to bend too much. Decided to put stimulator to ultimate test and turned it off. Felt fine for about 45 minutes then went to a level 9. Apparently the stimulator has some residual effect, according to my Medtronic person.
Monday-I woke after midnight and turned on stimulator and guess what? No pain when I got up later. I worked ALL day sitting and standing and felt good. By around 4:45 my back started hurting and I took meds. At 6 I decided to give my back a break and turned the stim off. At 7 the pain started coming back and by 7:30 I really remembered how bad it could be!!! It was awful so I put stimulator back on. Better now.
Tuesday-once again I turned on the stimulator around midnight or 1 am and could get out of bed feeling good. What a wonderful thing! Not just the back pain but the hip pain was gone too. I went right out and worked in my garden for awhile then went to work. Worked all day, went out for lunch, walked in the neighborhood. Pain at about a 3 whereas I’m used to 8/9 levels. For some reason I did get better coverage (70-80% relief) on my left side. Right side was always a little less (50-60%) coverage.
Wednesday-stimulator out. It didn’t hurt to remove it but I sure do miss it. Back to my old self.
All in all, the stim kept my pain at around level 2 or 3. For some people that may not be much but I went from a 8/10 to a 2/3 and was very happy. Able to reduce meds by 25% conservatively. Now I have to wait for the surgery but I believe that it will help me a lot! My neurosurgeon said that if the test helped even a little, the final product was like comparing a 1960 Corvair (not corvette, lol) to a 2013 Lamborghini. Bring it on! Zoom zoom.
I will keep an account of my actual implant as well. Hope it will be helpful. We are all in this journey together. Kathy