I had no intention of ever even mentioning my assorted medical issues on this blog but, over the course last 6 months, they have sort of been dominating my life. When I can’t think of anything interesting to post here, for example, it’s usually because I’m spending 80-95% of my waking hours sitting in one of my two reclining patio chairs (in my office at work or in my den at home) trying to make my back stop hurting so much. When I haven’t done any super-fun cooking to report on this nominally culinary-themed blog, it’s because I’ve had to cook simple things or order delivery because my back isn’t up to the task of spending any real time in the kitchen. Thus, here I am writing yet another post about medical issues… Sorry about that… and about the epic length of this post/rant.
To summarize what’s been going on: I had a trial (temporary) spinal stimulator implanted in June in hopes that it would help mask some of the pain from the nerve damage in my ankles. It was sort of a miracle how much it helped, and we decided to go ahead with a permanent implant. My surgeon from the MGH Pain Clinic (Dr. Ass-face) installed a single-wire stimulator. Apparently during the surgery they were getting high impedance readings in the place where the (awesome) temporary device had been, so they placed the permanent one a bit lower, and… it didn’t work. We could get coverage on one side or the other, but never both. The solution was to go back in for a more invasive surgery (this time Dr. Ass-face would be accompanied by a neurosurgeon, Dr. Awesome) to place a paddle-shaped lead (with three wires, featuring 18 different electrodes for my programmer to play with) in the proper spot. This surgery was the most painful thing I’ve ever experienced. Brutal.
A few weeks later, after most of the surgical pain had subsided, and after my programmer had given me some programs that did a nice job masking my ankle pain, a stabbing pain at one spot on the left side of my back started getting worse and worse every day, until I couldn’t get out of bed without pain meds and one of the pain clinic doctors made me go to the ER, where they found out that… nothing was physically wrong with me. They suggested turning off the stimulator for 5 minutes or so, which did nothing. They assured me that if the stimulator was related to my pain then I would know the moment I turned it off. I got home from the ER around midnight and was in so much that I could barely breathe. I turned off the stimulator at that point just because I had too much going on to deal with the erratic tingling it generates…. and the next morning was the first morning in a week when I woke up feeling a little better rather than a lot worse.
I ran several experiments over the following weeks and discovered a clear correlation between the stimulator being on and my back pain going crazy. The pain was there all the time, but took on a much more intense quality when the stimulator was on, and quickly got out of control. I talked to Dr. Ass-face about this every time I saw him (about every other week, when I went in to be reprogrammed) and each time he told me “You had a major surgery. Of course there will be some pain…” When I told him I was in so much pain that I hadn’t been able to go to work he prescribed something less effective than ibuprofen. I told him the pain wasn’t getting any better, and he sent me to physical therapy. Three and a half months after surgery, Dr. Ass-face was still giving me the “Well, you had major surgery…” line. My physical therapist was telling me that I should be seeing improvement by now if I was going to see any. My back wasn’t getting any better.
I decided to go see my neurosurgeon, thinking that he probably couldn’t help me but at least I don’t want to punch him in the face every time I see him, which is more than I can say for Dr. Ass-face at this point. The moment I told Dr. Awesome about what was going on with my back, he said “Wow. It sounds like the stimulator must be pushing on an intercostal nerve.” The more symptoms I explained, the more he was convinced that this had to be what was happening. We looked at my CT scan from the ER together and the device definitely leans over to the left, which he thought had to be more than a coincidence given that my pain is highly localized in pretty much the exact spot where that happens (and radiates around that rib when it gets bad, which is where that nerve goes). In case I haven’t made it clear, this is all information that Dr. Ass-face has had since November.
So, the good news is that we know why I’m having so much pain, we know why it’s not getting any better, and we know how to fix it. The bad news is that the only way to fix it is with another invasive spinal surgery. It sounds like Dr. Awesome will be responsible for the bulk of what happens this time, but Dr. Ass-face will be there to consult. After the last surgery I had the option of following up with either of the two surgeons, and I chose Dr. Ass-face (even though I already knew he was a self-absorbed pompous ass) because I can see him a 5-minute drive from my apartment rather than a 45-minute drive away at MGH. I can tell you now that I will be making the drive to follow up with Dr. Awesome at MGH this time.
Another fun tidbit is that I saw my physical therapist the day after I talked to Dr. Awesome, and I explained what he thought the problem was. She told me, “That makes SO much more sense. I asked [Dr. Ass-face] if that could be what was happening, but he didn’t think it was. I just couldn’t think of anything else it could be...” Awesome. I’ll find out my surgery date on Tuesday (hopefully), and then will get ready to go through all this fun again. Off to snuggle a therapeutic bunny…
To summarize what’s been going on: I had a trial (temporary) spinal stimulator implanted in June in hopes that it would help mask some of the pain from the nerve damage in my ankles. It was sort of a miracle how much it helped, and we decided to go ahead with a permanent implant. My surgeon from the MGH Pain Clinic (Dr. Ass-face) installed a single-wire stimulator. Apparently during the surgery they were getting high impedance readings in the place where the (awesome) temporary device had been, so they placed the permanent one a bit lower, and… it didn’t work. We could get coverage on one side or the other, but never both. The solution was to go back in for a more invasive surgery (this time Dr. Ass-face would be accompanied by a neurosurgeon, Dr. Awesome) to place a paddle-shaped lead (with three wires, featuring 18 different electrodes for my programmer to play with) in the proper spot. This surgery was the most painful thing I’ve ever experienced. Brutal.
A few weeks later, after most of the surgical pain had subsided, and after my programmer had given me some programs that did a nice job masking my ankle pain, a stabbing pain at one spot on the left side of my back started getting worse and worse every day, until I couldn’t get out of bed without pain meds and one of the pain clinic doctors made me go to the ER, where they found out that… nothing was physically wrong with me. They suggested turning off the stimulator for 5 minutes or so, which did nothing. They assured me that if the stimulator was related to my pain then I would know the moment I turned it off. I got home from the ER around midnight and was in so much that I could barely breathe. I turned off the stimulator at that point just because I had too much going on to deal with the erratic tingling it generates…. and the next morning was the first morning in a week when I woke up feeling a little better rather than a lot worse.
I ran several experiments over the following weeks and discovered a clear correlation between the stimulator being on and my back pain going crazy. The pain was there all the time, but took on a much more intense quality when the stimulator was on, and quickly got out of control. I talked to Dr. Ass-face about this every time I saw him (about every other week, when I went in to be reprogrammed) and each time he told me “You had a major surgery. Of course there will be some pain…” When I told him I was in so much pain that I hadn’t been able to go to work he prescribed something less effective than ibuprofen. I told him the pain wasn’t getting any better, and he sent me to physical therapy. Three and a half months after surgery, Dr. Ass-face was still giving me the “Well, you had major surgery…” line. My physical therapist was telling me that I should be seeing improvement by now if I was going to see any. My back wasn’t getting any better.
I decided to go see my neurosurgeon, thinking that he probably couldn’t help me but at least I don’t want to punch him in the face every time I see him, which is more than I can say for Dr. Ass-face at this point. The moment I told Dr. Awesome about what was going on with my back, he said “Wow. It sounds like the stimulator must be pushing on an intercostal nerve.” The more symptoms I explained, the more he was convinced that this had to be what was happening. We looked at my CT scan from the ER together and the device definitely leans over to the left, which he thought had to be more than a coincidence given that my pain is highly localized in pretty much the exact spot where that happens (and radiates around that rib when it gets bad, which is where that nerve goes). In case I haven’t made it clear, this is all information that Dr. Ass-face has had since November.
So, the good news is that we know why I’m having so much pain, we know why it’s not getting any better, and we know how to fix it. The bad news is that the only way to fix it is with another invasive spinal surgery. It sounds like Dr. Awesome will be responsible for the bulk of what happens this time, but Dr. Ass-face will be there to consult. After the last surgery I had the option of following up with either of the two surgeons, and I chose Dr. Ass-face (even though I already knew he was a self-absorbed pompous ass) because I can see him a 5-minute drive from my apartment rather than a 45-minute drive away at MGH. I can tell you now that I will be making the drive to follow up with Dr. Awesome at MGH this time.
Another fun tidbit is that I saw my physical therapist the day after I talked to Dr. Awesome, and I explained what he thought the problem was. She told me, “That makes SO much more sense. I asked [Dr. Ass-face] if that could be what was happening, but he didn’t think it was. I just couldn’t think of anything else it could be...” Awesome. I’ll find out my surgery date on Tuesday (hopefully), and then will get ready to go through all this fun again. Off to snuggle a therapeutic bunny…
No comments:
Post a Comment