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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


  • TerriPTTerriP Posts: 303
    edited 07/20/2012 - 11:53 AM
    WOW, you did a lot during the trial! I was wiped and had a lot more procedure pain than I expected, he gave me 6 stitches. Just very uncomfortable. Im impressed! So I too will have Medronic. The trial came out June 16th and eveyrbody said YEAH, lets do this! I havent heard a word. I read that your rep. was helpful with getting a surgeon for you, right? How long from trial to consult with neurosurgeon for you? My rep told me call the PM. I did. No return call. Rep is out of town till the 24th. Just wondering who was your best advocate?
  • My pain management doc did the trial. Once the trial was over, he did whatever paperwork that needed to be done to get the final process approved but he turned the rest over to my primary Medtronic rep, Cathy. I wasn't required to see my neurosurgeon again since I saw him less than 3 months before my test. Cathy knows my neurosurgeon and his head nurse very well so she called the head nurse to get it all set up. The nurse called me within the week and set up surgery for the end of July (1st available). The procedure has had to be moved to August 3rd because of a scheduling problem with the doc. Anyway, my rep has been the one cutting through all the red tape to get me scheduled. She has been great. But still it will end up taking me from mid-June to the beginning of August.

    Are you getting the adaptive stimulator??? Just curious.
  • MelWMMelW Posts: 427
    edited 07/23/2012 - 11:46 AM
    Thanks a ton!!! this is very helpful and informative. Keep us posted as you get closer and closer to having your implant put in. I bet you just can't wait!
  • kathyykkathyy Posts: 580
    edited 07/23/2012 - 1:44 PM
    Went to my hospital in downtown Atlanta for my pre-op testing. The testing was a breeze and I passed hands down. The parking garage was a parking garage FROM H++L!!!! My sweet hub drove us down since it is about an hour from our home and of course we hit rush hour heading back north to Cartersville!!!!! OMG, thought we'd never find a way out of the garage! We drove around and around until we finally found our way out! Anyway, a bit off subject but thought I'd lighten it up for a moment. We survived the parking gargage and I am scheduled for 8/3. I will be starting a new "topic" which will contain my day-to-day recovery notes. I will do my best to keep them as candid as possible. PS, any prayers will be welcomed! Kathy

  • Great news about your pain coverage. What a great success to go down to a level 2-3 . Saying a prayer now for a successful surgery and healing and a more pain free life. Hugs. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Adaptive Stimulator??????????????????? There really is a lack of 411 here. I did ask that that if possible I get the 1 kind that last 9 years with out further surgery. OK, please if you get a chance, what is the adaptive stim? My rep is "going to touch base" with my PM tomorrow, so maybe we will be ready to roll.
  • Adaptive Stimulator??????????????????? There really is a lack of 411 here. I did ask that that if possible I get the 1 kind that last 9 years with out further surgery. OK, please if you get a chance, what is the adaptive stim? My rep is "going to touch base" with my PM tomorrow, so maybe we will be ready to roll.
  • TerriPTTerriP Posts: 303
    edited 07/24/2012 - 11:47 AM
    Please be candid and honest. Although, you sound like a tough cookie! Im not even going to schedule mine until your 2 weeks post opt, the more I know the better prepared I will be. Im here for you all the way, albeit in cyberspace.
  • Kathy thank you for your journal of your experience! So helpful for so many! We will be praying for God to guide the surgeon's hands and for quick healing, too!
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