What Works for Me
Written in June, 2003, reporting on surgery earlier that year that has remained a complete solution to the problem
Recent advances in minimally invasive surgery have been very beneficial for me. After 45 post-polio years of avoiding surgery altogether, I have recently been forced into two significant surgical procedures. One was an emergency gallbladder operation (in 1999), done laparoscopically under general anesthesia. The other was a radiofrequency (RF) cardiac ablation (in May of 2003), to correct a persistent arythmia. This second procedure was done under heavy sedation, using my own BiPAP® (Respironics, Inc.) for mechanical ventilation. Both went well. The first was life-saving. The second got me off some drugs that had been compromising my energy and stamina for ten years, making it hard to sort out the late effects of polio.
The purpose of this note is simply a reminder that scaled-down instruments, sophisticated anesthesia and the range of procedures that can be done on an outpatient basis have given us all – especially those of us with respiratory problems – some significant new options.
I think this is important, since the medical management of our secondary conditions also has its risks x especially if it involves the use of powerful drugs with subtle side effects and interactions. Surgery is undoubtedly risky, but so are the medical options. The important thing is to weigh the two sets of risks carefully, without prejudice.
That is easier said than done for me, since I've gone out of my way to avoid surgical options for many years, just on general principles. But I'm learning to be more reasonable about this.
There are still some special precautions ventilator users, and perhaps post-polios generally, need to take. But they are fairly simple. And in my recent experience at least, medical people are now quite ready to hear, and to accommodate our insistence on noninvasive ventilation whenever appropriate. My physicians have also been willing to add (again on request) the extra layers of protection we might need for surgery – or for other procedures done under sedation, such as endoscopic examination, or screening colonoscopy.
My recent cardiac ablation was reassuring on all those points.
Here is the story, for what it's worth.
I had polio in 1952, iron lung variety, and have been using a ventilator for sleep ever since. In 1994 my chest respirator ceased to be effective, and I changed to a BiPAP. During the day I'm a "neck breather," with a forced vital capacity of 850 to 1000 cc, depending on position, and a maximum of 3000 cc with glossopharyngeal breathing (frog-breathing). I have a significant scoliosis, no use of my arms, and though I have good use of my legs, I have had increasing problems with balance and endurance since the '80s. Otherwise my health has been very good over the years. Blood work, including blood gases, weight, blood pressure and so forth are all in the normal ranges. My one and only encounter with surgery prior to this spring was an emergency gallbladder operation in 1999. It was done laparoscopically, in a small community hospital in Virginia, and went surprisingly well – though getting full recovery once I got home and back to work was a lengthy process.
Supraventricular Tachycardia (SVT)
Since the mid-1950s, I have had occasional episodes of supraventricular tachycardia (SVT). This is a relatively benign condition in which the heart suddenly shifts into high gear and beats at rates ranging from 160 to 200 and above, but in a more or less organized way x not the disorganized and dangerous way called fibrillation. You don't want SVT to go on for long periods, but a few hours isn't usually going to harm anything but your psyche.
Until ten years ago my episodes of SVT were infrequent and brief x no more than 15 or 20 minutes. That changed in the early '90s, when I began to have lengthy episodes that had to be resolved with a drug called adenosine, administered intravenously in an ER. The cardiologist I consulted prescribed additional drugs, taken daily, to reduce the frequency of those episodes. He started with digoxin, which didn't seem to have any side effects, but also didn't work. Then he tried a calcium channel blocker (Calan at first, and then Cardizem). These were reasonably effective at 240 mg, but I did not tolerate higher doses well, and I would have to make a trip to the ER once a year on average – usually at very inconvenient times. The calcium channel blocker also had burdensome side effects, including subtle decreases in energy, stamina and balance. Further, it increased fluid retention enough to require a low dose of a diuretic daily (Demedex, 20mg), which in turn required daily doses of potassium. And the treatment in the ER had its own risks. It involved the use of a short-acting drug, adenosine, that causes the heart to stop briefly (or "pause," as they hopefully put it), and although it is pretty safe as these things go, it isn't pleasant, and the presence of the crash cart is bracing.
But there seemed to be no alternative at first. In the early '90s there was a relatively new surgical procedure, called a radio frequency (RF) cardiac ablation, but it was a lengthy ordeal – routinely 4 to 5 hours, but sometimes much longer – and my physicians thought it would be too strenuous for me. Not to mention that when the issue first arose, I was still using a chest respirator, and that probably wouldn't have worked, meaning that some other form of ventilation would have to have been used. I was not eager for that, imagining an intubation. So I firmly declined to consider this option. More powerful drugs were also unappealing.
My cardiologist still thinks that my decision was the right one at the time, but I am now convinced that after 1994, when I went on the BiPAP, I should have begun to reconsider the ablation. My prejudice against general anesthesia and heavy sedation was very strong, however. I didn't even take a lesson from the fact that the BiPAP made having dental work miraculously easy. (I had never used a ventilator for that. Dragging the chest respirator to the dentist was too cumbersome to contemplate. So I struggled, and so did my dentist, who had to work on a moving target every time I caught a breath.)
RF Cardiac Ablation
Several things finally accumulated to change the risk-benefit calculation, however. For one thing, my medication became increasingly ineffective, recently forcing me to visit the ER five times in a seven-month period.
For another thing RF cardiac ablations became standard fare in large medical centers like the one in which my cardiologist practices. Assisted my one of his partners, he does about 120 of them each year, and there are about 15,000 per year done in the US. The success rate is very high: 90% to 95%. The rate of serious complications is under 3% nationally, but over the last few years my own cardiologist's complication rate has been under 1%. In part that is because he is quite risk averse. He would rather "fail" than increase the risk. In my case, we talked about the fact that two of the possible complications would saddle me with another major disability, and we were clear that he would back out rather than proceed if he saw the risk of one of those complications start to rise.
Finally, and probably decisively in my case, the length of the procedure has been dramatically shortened. It is now routinely 2 to 3 hours, and sometimes even less. In unusual cases it can still last much longer than 3 hours, depending on how difficult it is to find the source of the problem in the electrical wiring of the heart muscle.
In my case we got lucky. The whole procedure took only 2-1/2 hours, including a 30 minute testing session after the ablation itself. Still, time on the table is significant, and that is one important reason to have a good anesthesiologist. During parts of the process there is apparently no need for much sedation at all. In fact, the cardiologist said that I "didn't have much onboard," even during the part where they were burning through heart tissue. But I don't remember that part, and suspect they were also using an amnestic.
The rest of the details are unimportant here, except to reiterate that the procedure is done in a minimally invasive way, by the use of tiny instruments inserted through catheters into the heart from femoral veins and arteries. As I indicated, it is done under varying levels of sedation, so I do remember fragments of the process. But mostly I slept soundly on my BiPAP. The anesthesiologist timed things so that I was wide awake just as the nurses removed the instruments, and so I was able to breathe on my own for the trip back to my room. Although the procedure is technically an outpatient one, it does require up to 8 hours of closely supervised bed rest in the hospital afterward. Mine didn't get started until 3 pm, so I stayed overnight.
Happily I can report that it not only went smoothly but was completely successful. Recovery time was trivial (I went back to my office on Friday, after surgery on Wednesday), and there were no complications.
Does this experience generalize to things other than SVT? I think so, for post-polios. In particular, I think it generalizes to many diagnostic procedures that use sedation, and to surgery done with a combination of regional or local anesthetic plus sedation. I'm certainly not going to go looking for such opportunities, but I no longer regard them with as much apprehension.
One general caution: The sedation for these procedures in my regional medical center is typically handled by specially trained nurses. So it took some persistence, and flexibility on the part of my cardiologist, to get what he wanted in the way of an anesthesiologist. Further, we didn't actually get our consultation with the anesthesiologist until half an hour before the procedure. I had gone in for pre-surgical blood work and history the day prior to the ablation, and an anesthesia consultation had been arranged for that time, but it didn't happen. Nor did it happen early the next day, when I came back. These may have been entirely local problems. I hope so. But the lesson to learn is persistence.
And humility. The anesthesiologist who was eventually assigned to my case was extraordinarily good x not only technically proficient but kind, attentive and wise. The most important thing I learned in my conversation with him was the necessity for him to be prepared to do more for me than my BiPAP could do, in the event that unexpected things happened. He described exactly how he would want to proceed short of a full intubation. Further, he had read the records of my emergency gallbladder surgery, and was prepared to replicate relevant parts of that if he needed to. All of this was quite reasonable. I had been so focused on insisting on noninvasive techniques that I had not thought about backup procedures x even though I knew very well that one of the rare complications of cardiac ablations yields a pretty colorful emergency.
In sum, though, Ixm very glad I chose to have the ablation. The best thing, of course, is being free of the episodes of SVT. But the next best thing is being free of the side effects of a calcium channel blocker. I had not fully realized, until I came off the medication, how much it was compromising my limited reserves. I feel 10 years younger, breathing is easier, my balance is somewhat better, and I have more energy.
Larry B., Virginia (email@example.com)
End of What Works for Me