My friend Andrea drove me about an hour and a half to meet a rep from Boston Scientific last Monday so that I could get my spinal cord stimulator (SCS) reprogrammed.
For several weeks I have noticed that I haven’t been getting stimulation in either leg below my knees. My pain has not been as well controlled with my permanent SCS as it had been during my SCS trial and shortly after the surgery.
When at its very best, the SCS has been capable of relieving up to 90% of certain types of pain such as the allodynia… and 20% of the other types of nerve pain that it never has covered well (the burning and bruising pain). I’m currently getting 20-30% relief overall. I consider this a failure. During the SCS trial period (1-week trial), a patient must receive 50-60% relief for insurance to consider the SCS successful enough to approve the permanent implant. So how could I be satisfied with a 20-30% improvement when I was receiving 80-90% before?
For most of the patients I’ve talked to, reprogramming solved their problems and they were able to recover lost coverage. My rep told me that she never spends more than 45 minutes reprogramming a patient’s SCS because it’s such a mentally taxing endeavor, and that it is. Yet she’s exhibited great patience with me and has spent over an hour and a half each time she’s reprogrammed me (twice now since my SCS implant on December 14th). I’m confident she’s tried every trick in the book to help me out. I’m grateful for her efforts!
She had told me previously that if we couldn’t get better coverage through reprogramming, we’d get an x-ray with the fluoroscope to determine where the leads were. The lowest electrical contacts on my leads should be stimulating my feet and toes, but they are still stimulating my abdomen. An x-ray isn’t going to fix anything; it’s just going to tell us what is already wrong. It’s pretty obvious what has happened; my leads have moved. There’s only one other way to get the stimulation back now – surgery to move the leads back into place. This is called a “revision”.
I feel that God has lead me very clearly to and through the SCS surgery. I don’t regret one bit getting the SCS. I’m sad right now about the state of things, but I’m still happy and I absolutely feel like I did the right thing. God has given me peace through this incredibly stressful process.
Dr. N tried to give me the best of both worlds – stim in all major areas (including arms), while trying to include both my belly and toes. I don’t fault him for that. Perhaps he was overly optimistic about the outcome, knowing the risk of losing coverage in my abdomen or legs was high. But we do still have the possible option of pulling the leads down to gain full leg coverage. It could be worse, right?
I would find fault, however, if after trying something a bit risky and seeing that it failed, Dr. N did NOT give the option to make it right by moving the leads down.
I am a bit upset about what took place in the operating room. I didn’t have enough information and I feel like the staff didn’t listen as closely as I needed them to during the procedure. I told them several times that getting stim to my toes was not optional – it was necessary – and that if it meant losing abdominal coverage, so be it. They asked me a few times, “but do you feel the stim in your feet and toes at all?”. “Yes,” I said. “Okay, we will get it worked out later then.” So I just trusted them and believed that they would be able to reprogram it so that the stim would be stronger in my feet and legs. And I guess for the first week and a half or so, we were able to keep stim there and get it working well. But then it left my feet and ankles, and after that it retreated to just under my knees.
I told my rep, “In the O.R., I was in a lot of pain when it came to moving the leads. And unfortunately, when I’m coming in and out of anesthesia, I tend not to cope with pain as well as I do normally; I beg for meds for the pain when I normally would just tough it out.” She answered, “We want you to be comfortable enough to tell us what’s happening in the O.R.”. “Yes, I know,” I said, “but I wish we’d spent more time getting things exactly right. In the O.R., the stim in my right arm was hitting my right thumb really hard and I was getting the most coverage on the radial side of my arm. I said that many times. I wish we’d pulled that lead and tried again because now I’m stuck with a right arm that doesn’t work well and the lead in my neck hurts when I turn it on.”
Now I’m having trouble trusting my doctors and those involved with my SCS. I’m sure they meant no harm, but much better communication would have been a huge plus. I wish I’d known that I needed to advocate for myself in that O.R. rather than just going in trusting them to listen closely to me and get it right then and there before closing me up.
Emotionally, this has been challenging. Actually, the whole SCS process has been more emotionally charged than I expected it would be. I’m trying to be a realist and I’m trying to be super-careful about how I move, to avoid problems before they arise. I don’t want to worry about things that aren’t going to happen or that haven’t happened, however, and over which I have no control nor responsibility. That’s a different category. I usually say I want to “hope for the best and plan for the worst”. I usually do well at the planning and I am not so good at the hoping.
So, now, I need to talk to my doctor and make it very clear, black-and-white, that my current SCS setup IS NOT WORKING and I want it to be fixed. Period. I’m advocating for the next 10-20 years of my life right now. The SCS is my ONLY form of pain relief. We must get it right, and I won’t stop being a squeaky wheel until it is done correctly. Mediocrity is not an option.
I don’t feel like I have the energy to advocate right now. I’m tired of life and the fight it takes to keep living. That’s the cold, hard truth. But when I remind myself that this decision represents the next 10-20 years of my life…I’m more motivated. I can’t give up and settle right now. It’s time to get up, dust off, and press forward. Lord, help me!
I don’t want to put off a revision surgery by weeks or months unless we have a solution that doesn’t require surgery and that is promised to work. Why? For two reasons:
1) Because the healing that happens between now and then is pointless and my four months of movement restrictions will have to begin all over again. I’m currently just past one month post-op. With another surgery, I could lose two more months. It’s not something to sneeze at or take lightly.
2) The longer we wait, the more scar tissue will build up. It is this very scar tissue that holds the percutaneous leads in place long-term. The more scar tissue that’s grabbing onto those leads, the more stress will be put on the hardware when those leads are pulled down, increasing the risk of damage to the hardware and of lead breakage (which would totally stink – “gone fishing”).
I don’t believe a revision which would ONLY pull the lower leads down (losing abdominal coverage but gaining full leg coverage) would require surgery that’s as invasive as the original implant operation. If we are going back in, however, I absolutely want my right arm lead to be corrected simultaneously. The lead hurts me every day and it hurts even more when I turn it on (I suspect it may be irritating the nerve roots). This may be more involved and could significantly increase the invasiveness of the procedure.
There’s a lot to think about here. A lot that I really need my doctor to be open to hearing. I need the energy to advocate, and I need to do so in a non-adversarial manner even though my trust factor has significantly decreased. I need to be able to make good decisions with clarity of mind. And if I get the revision surgery, I also need to be able to advocate and very clearly communicate during the procedure. Endurance. Persistence. Courage. I need it all.
Raising a toast to an SCS that will work well for the next 10+ years.