Spinal Cord Nightmare

I want to start out by saying that I'm so sorry you are facing such a nightmare. It sounds like every day is agony for you.

I had a L4/L5 spine fusion in 2014 that had me feeling fantastic until I tripped over my beloved dog and face planted 6 weeks into recovery & my L3/L4 disc herniated. I'm going to have a L3/L4 laminectomy in October because my disc is worse and I have severe stenosis. Here's my spinal cord stimulator nightmare, although I will say that my stimulator has allowed me to continue working full-time which would not be possible without it:

I had my stimulator put in in my left buttock April of 2016. By June of 2016 I had to have revision surgery because the stimulator battery had migrated up until it was basically under my love handle and my leads had slipped to where I wasn't getting nearly the coverage I had in the beginning. Walking was agony because the battery was pushing up with every step. During the revision the surgeon put the stimulator battery back in the pocket & he said he "built a dam" using stitches, etc. so the battery would no longer move. I was extremely careful with how much I walked & how I moved during my recovery from the 2nd surgery to be sure that scar tissue formed to keep the battery in place. I never have gotten as good of coverage as I had when my leads were initially placed.

Fast forward to March 2018. Since the stimulator battery couldn't migrate up due to the "dam" the surgeon built, it started to slowly flip outward instead. I could literally grab it when sitting down. I thought walking was agony before, ha! The surgeon said he's never had anyone have this kind of trouble.

So they decided to do yet another revision to move the stimulator battery to my right buttock. That means the scar for my initial surgery & the 1st revision was opened up a 3rd time. The recovery from that surgery was a special kind of hell.

Now the stimulator battery in my right buttock is fine. It migrated a little but it's okay. What I refer to as my "empty pocket" in my left buttock is concave, of course, but that doesn't bother me. What does is the pain I feel after I've walked about 1/4 a mile, even when going at a slow pace like grocery shopping, & still feels hours afterward. I think it's the "dam" he formed and the scar tissue surrounding it that makes it feel like something is still pushing up. Because of this, I can't exercise nearly as much as I would like & I can't enjoy going anywhere that requires alot of walking, like a fair or even a long grocery store visit.

I've been to physical therapy where they use special tools to try to break up the scar tissue but that didn't help. I've honestly considered trying to find a doctor that will clean out that empty pocket and all the scar tissue in & around it. Of course, new scar tissue will form but the surgeon that does those kind of surgeries is suppose to know how to make it work to where it's not right back to how bad it was. I'm sure I can't afford the surgery so it's just a dream right now. Lidoderm patches help a tiny bit.

My mental health has suffered greatly from all this. I'm not bipolar but I suffer from depression, always have from as far back as I can remember and it's so much greater now. This all feels like a terrible roller coaster ride I can't get off of.

I hope you are able to make progress towards getting a normal life back soon.