Well, it's been just shy of 12 weeks since my SCS implant surgery, on December 3, 2008. I was really hoping that I'd have stellar results like so many people have reported, but that's not happening. I'm disappointed and trying very hard not to get discouraged. Here's my "War and Peace"-length update...
General whining: The post-op pain from the surgery itself was really harsh, much worse than I expected. The worst pain was from where the wires tunneled, second-worst was the "pocket" for the implant. One of my doc's nurses had told me I didn't need to bother with my employer's Short-Term Disability paperwork, as I'd "be fine in a couple of days" - I'm glad I ignored her (and the crack pipe she was obviously smoking). I was in enough discomfort even at 2 weeks post-surgery that I found it impossible to drive, even though they told me I could. I spent almost 3 weeks lying on my right side or standing. So not amused. (end General Whining Session)
I've had 4 programming sessions so far, all in the first 6 weeks post-implant. (I had a LOT of inflammation that took a while to calm down - they had a great deal of trouble placing one of the wires - so the doc says that it's not out of the question to have had radical changes in stim coverage/perception and need to re-program that many times.) Last programming session was Feb. 14th. I decided at that point to just try to work with the programs they'd given me, and let myself finish healing.
So now it's almost 12 weeks post-implant. I'm pretty much healed, except for some incision itching (still! lol) and soreness around the "pocket" when I have to lean back in a chair. The implant didn't seat evenly, one corner is closer to the skin than the other 3, and it gets very tender very fast with any pressure on it. That, I can live with. But the biggest thing that's going on is that the stim doesn't seem to be working for me. Yep, I'm still in pain. Fabulous!
I have a call in to my rep, to go in and talk to him & my doc again, try reprogramming again, and discuss next steps. Because it doesn't make sense. The trial was great, I got major pain relief. With the perm implant, some of the programs are at least in the right place - I can feel the buzzing is covering the areas where the pain is - but I'm just feeling the buzzing on top of the pain. Some of the other programs are now hitting me in the torso, and they are actively uncomfortable, so obviously those aren't the right programs. And all of the programs give me *awful* muscle cramps, for HOURS after the unit is turned off. *sigh*
The doc had talked about possibly needing to replace 1 of the wires, but I am strongly against doing this - I don't want to have to go through the surgery again, or the nightmare that was the insurance approval process. I'm also worried about losing my job if I take more time off. And still there's no guarantee that replacing the wire will make this thing work the way the trial did.
I'm really hoping it's just a case of needing to monkey with the programming some more. But I'm not feeling confident about the possibility of success. I still hurt, I'm still taking just as many pain meds as I was before the surgery, I'm still not sleeping more than an hour or 2 at a time, and now the bills are starting to roll in.
Speaking of the bills: St. Jude Medical - formerly ANS - is charging $44,800 for the whole setup of implant, wires, charger, etc. FORTY-FOUR THOUSAND, EIGHT HUNDRED DOLLARS. WTF?!?!? Total medical bills so far, between the trial and the perm implant surgery, are already at $150K, and I still don't know how much of it my insurance will actually cover. I'm so stressed.
If I had to do it over again, I don't know what I'd do. And I don't know what I'm *going* to do if this doesn't wind up working for me. I'm hanging on by my fingernails as far as being able to keep getting up & going to work every day. And yeah, I'm depressed, too. No wonder.
So to make a long story short: So far, it's not working for me. I still have some hope it will, but less every day. I'd love to be able to post much better news than this in another month. Think good thoughts my way, hmmm?