Part 3 of 2
I should probably start by explaining why this update has taken so long, shouldnt I? Yeah, I think that would be a good place to start.
Around the time I started writing this update I had a major falling out with Dr. S. MAJOR falling out. And were going into the part where she runs in and saves the day; I could not bring myself to write one positive word about her at that time (to be honest, I still cant). I worried, too
would GAF believe Dr. Ss interpretation to be accurate? What happens to this thread when I reach that point of the story? How many doctors am I allowed to have a disagreement with before it starts to seem that the bad doctors were right all along? Surely, some will think this way. It wasnt something I wanted to face. The past six months have been an extremely delicate period.
Reason two is, Ive given you guys a lot more detail than Ive given to most of my extended family and Im starting to feel pretty shitty about that. I felt like I needed a way to tell them all of this (beyond simply linking here). I still havent found it, and I still feel pretty shitty about it. But, I enjoy the anonymity I am afforded in this setting. It makes it much easier to talk; Ive missed it.
Much has happened between now and then, so lets not pretend that Im going to be able to provide a satisfying conclusion to this story. Probably ever. The fact is that I live with a disorder that is incredibly complex and unpredictable see my last couple of posts about my new leg pain. I have yet to find that ending, happy or sad, which will allow me to move beyond this and focus on the parts of my life I enjoy. I wont attempt to create the illusion of one here, and to suggest that I would be able to do so was a mistake. Im sorry.
On that note, Im not going to try to spin this yarn in a way that sets up cliffhangers and whatnot. That was dirty pool. It wont happen again. Ill certainly continue updating this thread whenever anything interesting happens
and Ill warn you right now that Im not going to be able to catch us up completely to present day in this post. I will endeavor to return sooner, though.
Now then. Where was I
oh right! Lets talk about paddle leads, and hope my fuzzy brain can remember how this all went down.
This is a paddle lead:
And this a description from Medtronics website:
Medtronic said:
Designed to improve the effect of neurostimulation therapy on low back pain, the Specify 5-6-5 surgical lead features 16 electrodes arrayed in three columns on a durable, flexible, curved paddle that conforms to the anatomy of the epidural space. The electrodes six in the middle column and five in each of the outside columns are securely embedded in the paddle with patent-pending DuraLoc electrode technology. They are arranged in a diamond pattern that is intended to maximize therapeutic effectiveness while minimizing energy consumption. Each electrode can be activated and programmed independently, which enables customization and adjustment of neurostimulation therapy based on individual patient needs.
The difference between a standard lead and a paddle lead is substantial. Where the standard lead is simply a wire that is tethered to one spot on the spine, the paddle lead is a long strip of plastic that rests on
top of the affected area. It covers a much larger area and the greater number of contact points allows for highly customizable programming. With the standard leads, all I could change on my own was the type and intensity of sensation, even if it had worked properly. Medtronic technicians could change other things within the field, but the effective range was always limited by the placement of theleads. It seems rudimentary, archaic even, when contrasted with the paddle.
As you can imagine, sitting in my new neurosurgeons office, reading the pamphlet about the paddles consumed me. What the hell was I doing with two shitty points of contact that didnt even work properly when I could be flying in style with 16 electrodes? I put this question to each of my doctors as we went through the peripheral lead test, and while they each believed I may have been a good candidate for paddle leads when my SCS was first implanted (I have never been able to confirm if they were even in use at OHSU at the time), they maintained that it was just too late to take the old leads out and start over. The risk was too great.
ARGH.
After the peripheral test went poorly, though, they began to soften on the issue, and I made sure to press it at every appointment. I didnt care about the increased risk
I wanted my stimulator to work the way the first test unit had worked (I will never forget that incredible day, documented earlier in the thread). I wanted to be able to walk more than fifty feet without collapsing, I wanted to be able to use a flight of stairs without spending an hour recovering from the ordeal, I wanted to be able to vacuum the fucking floor! This was the promise of that first test unit two years ago. It never claimed to be a perfect solution
nothing is. But it seemed on that day that these things could be within my reach, which was why the actual unit was such a disappointment. Sure, it provided some low-grade pain relief, but it didnt seem to be improving my actual day-to-day functioning at all.
This was the point on which I eventually convinced Dr. B and Dr. S to move forward with the lead replacement surgery; Dr. B was especially pivotal in this decision. His philosophy in my treatment has always been centered on the practical; if a particular treatment is relieving 10/20/30% of my pain, but failing to get me out of the chair any more often, he considers the treatment strategy ineffective. This is a stark contrast to Dr. Stacey, for whom the 10-point pain scale was the only important measurement of a treatments efficacy. This can be seen in his reliance on potent narcotics: doesnt matter how foggy the patient feels, as long as his pain is lessening. It was an approach I appreciated at the time
I didnt care much about my activity level either! But there comes a point where you realize that what Dr. B is pushing is a much more sensible approach as I noted in part 2 of this update, he helped wake me up to the fact that Im not dying (well, not immediately. He seems to delight in reminding me of my shortened life expectancy, the old bastard). The focus should not be on making me as comfortable as possible, it should be on allowing me to LIVE as freely as I possibly can. It took awhile to come around to this (there was much whining on my part about Dr. Bs reluctance to prescribe potent drugs in several categories), but the contrast in my quality of life since starting up with Dr. B vs. my quality of life under Dr. Staceys care is hard to miss.
We never really brought Dr. H, the neurosurgeon, around on the decision to open me back up. Lemme tell ya
.not so comforting, when the guy who is going to be fiddling around with your spinal cord is grumbling right up to the last minute about what a terrible idea this is and that Im so totally asking to be paralyzed from the waist down for life. My wife kept reminding me that this is a guy who cracks skulls and mends brains for a living. From her viewpoint, he was probably covering his ass in the event anything went wrong, and nobody seemed to think that was actually likely. Except, ya know. The guy who was actually going to be doing it. Never before had I so thoroughly researched a doctors reputation and body of work; I found that Dr. H is well respected and he seemed competent my only issue being that he appears to be roughly 95 years old. At this point, though, the paddles seemed like my best shot at improvement, and with the support of Dr. S and Dr. B , we rolled the dice.
So, now Im paralyzed. Son of a bitch.
Kidding.
The paddle installation went just fine, and they are awesome.
Awesome. Whereas I used to be limited to two aspects per program (one per lead), I could now have anywhere from one to three, and I had sixteen points of contact to choose from in designing those programs. Although I still need to see my buddy Andrew periodically to make adjustments, I possess much more personal freedom in adjusting my programs. In fairness, I would have had
some additional leeway had my first set of leads been implanted properly, but nothing like what I have now. The sensation, the size of the field, the intensity
I can make these changes with a program Im currently using without fear of zaps! on the fly. It typically only takes a couple of minutes.
It took awhile to trust the new lead; I kept waiting for that inevitable ZZZZAAPPP when I shifted just a bit or used the wrong program in the wrong position, but it never came, and almost a year later, it still hasnt. It really got to a point with the first set of leads where it felt like I had allowed something invasive and terrible into my body
that I now had two monsters to deal with instead of one. There were nights when I wished I could have reached back and clawed it back out myself. I have never experienced this sensation with the paddle leads. They feel like a part of me now in a way the old leads never did.
It still isnt that miracle cure I thought it would be after the first test, but it does allow for the kind of activity described above. The best part is the freedom; if I know Im going to need to lean on it a lot on a particular day, I can crank it without having to worry about discharge issues. Its hard to maintain at an extremely high level for more than a couple of hours for some weird reason it always reminds me of those classic comic book scenes with characters like Invisible Woman or Dr. Strange, when theyre trying with all their might to keep the
.shield
up
.just a bit
longer! Its only a matter of time before the intensity becomes too uncomfortable and I need to turn it down, or even completely off for a little while, and it leaves me feeling completely physically and mentally drained. Still! The fact that I have the freedom to do that is
amazing. It granted me more freedom to actually live my life than I had had in quite some time. I could go out with friends every once in awhile. I could help around the house. I could attend a wedding, or a funeral (which is good, I suppose, as my best friend was to die mere months after my surgery). Its an ongoing fight, but the SCS with paddle leads has finally become the asset in that fight that I always wanted it to be.
So, this is about where I intended to stop my last update, and it still seems like a good stopping point for now. Id still like to discuss the fight for SSD, the fallout with Dr. S, to detail my new pain area and to talk about the treatment approaches Im working on now
but theres no way I can cover all that here. Again, I will try not to leave this thread twisting in the wind for quite so long in the future. As always, your interest, support and encouragement go a long way. Thanks, GAF. I hope this was worth the wait.
edit: Oh right, I totally forgot I said I'd throw this up here:
My crappy art skills aside, this has turned out to be an extremely helpful diagram. Every new doc I see asks for a copy. If you or someone you know is going in for pain treatment...do this. It makes a big difference in that initial meeting.