I've previously written about my AVS experience and the later discovery that it was a failure.
I foolishly did not seek out a second opinion on the results. By extreme good fortune I nonetheless received a second opinion before going to surgery, from a nationally prominent authority on primary aldosteronism and the interpretation of AVS. That second opinion, a verdict of failure, was subsequently confirmed by a third opinion, also a verdict of failure, from another nationally prominent authority.
So I informed my local doctors of these opinions and detailed the reasoning on which they were based. For some time, all I heard in response was crickets. Nobody owns a failure in U.S. medicine. Alden who? There is really no incentive to own a failure. Everyone got paid. For the radiologist, it was a frustrating hour out of a drizzly day. It is only for me that it was a careless, life-altering waste of my sole opportunity for this procedure. We maintain our illusion of the superiority of American medicine by comparing our best performances and achievements to everyone else's average performance. We leave out the drizzly days, the arguments with teenage kids, the snuffles, all the things that may lead to an off-day at the hospital. We gloss over failure as unrepresentative. Like poverty and ignorance, it goes largely ignored. It doesn't enter into our self-image as a nation.
Ultimately I did receive a response of a kind: my endocrinologist fired me by letter and reiterated the local radiologist's absolute certainty that the results simply must be correct because he saw the images -- an absolutism which the endo tempered by adding that unlike some in medicine, he himself never says never. I suspect he has been browbeaten by the radiology department and their absolute self-certainty and realizes that he must work with them for a long time to come, while his relationship with me was always destined to be a temporary one.
Nonetheless, this was a point where my endocrinologist should have risen to the occasion, standing up for me at time of my great need with advocacy, support, discussion of alternate paths forward, optimization of my medication if that was to be my long-term course, reconsideration of his recommendations, a closer look at varieties of bilateral aldosteronism (if the left lateralization was indeed invalid, as the experts were certain), etc. But he didn't stand up for me. He stood down. He joined the white-coated line of denial to leave me hanging in the breeze. I was disappointed in him because I had thought he was better than that. But ultimately I can't be surprised. What he did is typical of almost (but not quite) all I've seen from the medical corps in 25 years of being back in America.
Looking forward, the failure of my procedure could have been averted by adherence to well-documented best practices. So I identify here for others the three most important best practices that were ignored in my procedure.
Part of the problem is that AVS has just recently become the procedure du jour for interventional radiologists. Everyone wants to be able to say, "Oh yes, I've done a few of those." Indeed that is almost the verbatim response a number of radiologists outside my circle of caregivers have given on hearing that I underwent the procedure. AVS has spread enough to appear on the radar of interventional radiology departments across the country but not enough for most to have accumulated any significant experience in it. Many interventional radiologists have probably just attended a seminar and watched some video of the procedure -- and are itching to get the opportunity to try one.
NUMBER ONE: Virtually every well-cited article emphasizes the critical importance of channeling all procedures to one or at most two practitioners within the group. This did not happen in my case. My endo had painstakingly chosen a radiologist very experienced in AVS. I have since come to doubt that assessment, but it didn't matter because the radiologist was switched at the last moment. I was informed as the procedure was beginning. The substitute doctor said not to worry, that "All of us do it." Actually, that was his non-answer to my question, "How many of these have you done?" So in hindsight I am guessing I may have been his first. Now this is a group with more than twenty radiologists. And they all do lots of AVS and are expert in it? I don't think so. This was a clear and fateful failure to follow documented best practices. If you are going to have an adrenal vein sampling done locally, wherever you live, you must ensure the procedure will be done by the one person (or one of two) who handles ALL AVS procedures for the practice. Get it in writing. (As this procedure becomes more common, it will eventually become impossible to get it scheduled with the Mayo or NIH specialists who have performed hundreds of them.)
NUMBER TWO: Most of the experience-based articles I've read emphasize the importance of the radiologist studying all prior venography before beginning the procedure. I know that I was not asked to sign an authorization for release of medical records before my procedure, so it seems most likely my radiologist did not study my adrenal CT images taken just a couple of months earlier at a hospital less than three miles away. Here again we see overconfidence, the most common source of medical error in the U.S., in the assumption that everything would become clear in real-time fluoroscopy
NUMBER THREE: I've read a number of reports emphasizing the importance of using rapid intra-procedural cortisol assay during the adrenal vein sampling to ensure that the catheter is actually sampling right adrenal blood before locking in the aldosterone sample. In other words, they test the cortisol levels for every sample while the catheter is still in place and verify that the samples are valid while there is still an opportunity to take different samples. This refinement to AVS is spreading through the US and the question is not whether your hospital will one day use it; the question is only when they still start using it, today or after five failures or after ten. One cannot simply rely on the experience and visual judgment of the radiologist. No matter how experienced the radiologist, a certain percentage of people have anomalous venous configurations in which the visually most plausible vein will not be the vein that is actually draining most of the adrenal output.
Nicholas Daunt's excellent article from Australia's Greenslopes Private Hospital (Adrenal Vein Sampling: How To Make It Quick, Easy, and Successful) describes and systematizes the varieties of less-common configurations seen in the nearly 1,000 procedures done over a ten-year period at that hospital. An article by Mengozzi et al at the University of Torino details a careful analysis of AVS performed both with and without real-time cortisol testing. Those authors observe that some people have more than half a dozen visually plausible veins to sample, of which normally only one will yield correct results. They further calculate a comparative cost of USD 55,000 (over all AVS procedures in their study) for the addition of rapid cortisol assay versus USD 220,000 in AVS failures if a vein had been chosen without rapid cortisol assay. The cost argument is compelling. Drs. Auchus et al at the University of Texas make a very similar argument, pointing out that most radiology groups cannot or will not devote a single radiologist to the procedure and that it is therefore essential to use rapid cortisol assay. And there are others. As I note above, even WITH a single sub-specialist doing all AVS in a practice, there are venous configurations where fluoroscopy alone will lead to a confident choice of the wrong vein.
You are likely to encounter resistance from experienced AVS practitioners who think they're "too good to use training wheels." But if you have an unusual venous configuration, you could well become one of even these most experienced doctors' occasional failures. Insist on the rapid cortisol assay.
Nicholas Daunt's excellent article from Australia's Greenslopes Private Hospital (Adrenal Vein Sampling: How To Make It Quick, Easy, and Successful) describes and systematizes the varieties of less-common configurations seen in the nearly 1,000 procedures done over a ten-year period at that hospital. An article by Mengozzi et al at the University of Torino details a careful analysis of AVS performed both with and without real-time cortisol testing. Those authors observe that some people have more than half a dozen visually plausible veins to sample, of which normally only one will yield correct results. They further calculate a comparative cost of USD 55,000 (over all AVS procedures in their study) for the addition of rapid cortisol assay versus USD 220,000 in AVS failures if a vein had been chosen without rapid cortisol assay. The cost argument is compelling. Drs. Auchus et al at the University of Texas make a very similar argument, pointing out that most radiology groups cannot or will not devote a single radiologist to the procedure and that it is therefore essential to use rapid cortisol assay. And there are others. As I note above, even WITH a single sub-specialist doing all AVS in a practice, there are venous configurations where fluoroscopy alone will lead to a confident choice of the wrong vein.
You are likely to encounter resistance from experienced AVS practitioners who think they're "too good to use training wheels." But if you have an unusual venous configuration, you could well become one of even these most experienced doctors' occasional failures. Insist on the rapid cortisol assay.
Now you might not succeed in getting rapid cortisol assay if your AVS is being performed by one of the "legendary" doctors in the field. They may feel their experience and track records are enough in themselves. And maybe they are -- I'm not going to contradict a proven record of excellence in someone who has done several hundred of these procedures compared to your local radiologist's likely less-than-a-dozen. We should applaud such success and do our best to see that as many patients as possible are able to access that level of expertise. But I do wonder: do even those star performers never have a failure? To them, a failure might be 1-in-100, maybe only 1-in-200. But to you as an individual, if you're the unlucky one, it's a 100% rate of failure.
With these three best practices:
- channeling all AVS to one or at most two practitioners in a practice
- studying all previous adrenal venography
- using rapid cortisol assay during the procedure to assure correct selection and cannulation
I foolishly relied on the assumption that a premier hospital like mine would adhere to best practices. Yet my radiologist overconfidently ignored point One and Three for certain and probably point Two of these requirements, and thus my result became a predictable and avoidable failure. He then insisted his own judgment was superior to that of people who have performed and interpreted hundreds of these procedures next to his own handful. You cannot rely on local reputation or celebrity alone. You must insist on adherence to best practices. You will in all probability get only one chance at this procedure, unless you are able to pay $10,000 - $30,000 plus external costs (additional thousands in my case) out of your own pocket for a do-over -- or pay a lawyer to wrest one from your insurance company or radiologist. I said earlier that "nobody owns a failure." But actually, that's not quite accurate. The truth is that we, the patients, inevitably own the medical system's frequent failures.
One simply must be a royal PITA to avoid becoming roadkill in the assembly-line world of American medicine.
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