Recently completed ST.Jude burst system trial

I had gone through a trial of the Boston Scientific about 5 years ago and rejected a permanent implant because the tingling was OK but the pain remained. Then 2 1/2 years ago I had spinal fusion which halted my worst 100% debilitating level 10 pain that would intermittently occur along with a level 3-5 lower left side back pain that was constant.  In exchange for the occasional level 10 left side lower back pain, the surgery left me with constant 24/7 right side lower back pain along with pelvis, hip, and a bit of groin pain that would elevate or subside depending on the level of my right side lower back pain. No more crossing of feet, or legs when sitting, and absolutely no more normal sleep. No side sleep which is the way I have fallen asleep for 60 years. Now it’s only on my back that I can sleep and not well at all. I sleep in blocks of 3-4 hours then another block of 1-2 more hours always waking in level 8 pain. 

I just finished a trail of the St.Jude Burst system that my pain mgt doc and I have been waiting nearly a year for. The trial was conducted last week with only 1 lead on right side. Since I had already had a trial of an older system years earlier that failed, my Medicare insurance would not cover another trial, so I had to pay for it; one lead was almost half the $2000 cost. Medicare covers only 1 trial per lifetime. The one lead trial was actually all I needed as a trial since all my pain migrated to my right side since my fusion surgery. Anyway as it turned out the trial significantly reduced my pain which, again, was ranging from level 8 right side lower back expanding to pelvis, groin and hip, then later in the day or after sitting long periods the sciatic pain from back of both legs begins in earnest. The stimulator must have helped slightly for my sleep since after my first 3-4 hour block of sleep I was able to fall right back for another 2 1/2 more hours and get 6 - 7 1/2 hours sleep during the 7 day trial. However, I would still wake with a 7 -8 level of pain depending on my body position through my last block of sleep, but my pain would rapidly dissipate within 15-30 minutes after getting out of bed in the morning which was never the case before the trial which required 3 tabs of 5mg oxycodone by noon to do the same or even less pain reduction. Then through the day my pain would reduce to as low as 0-1 if I was not to active but would elevate to nearly a 3 level when I would drop my boat in the water and go fishing and casting lures for 3-4 hours. This I did twice during the trial with good results.  Before my trial the pain would elevate to 5-7 after that kind of activity but with the trial it would never get beyond 3 and the leg and feet pain disappeared almost entirely even with the activity. 

To keep things constant and comparable, I was instructed to continue with my pain meds which are only 5 mg of Oxy 3 times /day. I take no other meds. I was able to extend the time between taking my meds through the entire day and felt that I could have gone completely without them and have little increase in overall pain which is my goal. Getting off the meds is one of my primary concerns in order to get back to flying as a pilot although no longer as a professional airline pilot since I retired. The stimulator power was set to an 8 power setting throughout the trial with the exception of 2 hours at 7 and 2 hours at 10 just to see if there was any detectable difference. No significant difference was detected. Just minutes before removal of the lead after 7 days they x-rayed my back to see if the lead had moved any during the trial and the x-ray showed that there was some lead movement. I believe that I felt that the later days of the trial was a tad bit less effective and now suspect it was due to a bit of lead movement. 

In 3 weeks I am to undergo a permanent implant. Now the major question for me is location of the generator/battery pack. I've been reading and an abdominal placement seems the most reasonable to me especially since weight loss seems to occur in the abdomen the slowest. I intend to shed 10-15 pounds. With the stimulator I was able to get some side sleep which is most relaxing to the rest of my body but slowly builds up back nerve pain. Usually I manage to fall asleep quickly then end up on my back after I have fallen asleep, but never on the stomach anymore.

My Dr. said that I must wear a brace for 6 weeks and 12 weeks would be preferable. The reason for the brace is not to support the back but instead simply to prevent me from over extending my reach, bending and twisting that would cause lead movement since getting the leads to anchor in the correct position from growing scar tissue is paramount to the success of the stimulator.

That's my story, and any input would be appreciated especially about implant surgery and generator/battery pack location and placement. I will not bore anyone with needless personal chit chat. I will stay on point and strictly give accounts of my ordeal in order to enlighten anyone considering stimulator implants so they can make their best possible decisions. 

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