To AVS, or not?

The decision to proceed with AVS before surgery is a difficult one. Not only is it a particularly unpleasant sounding procedure, but it is not without risks. Mainly, the possibility of damage to one or both adrenal glands.

I’ve been doing a bit of information-gathering these past few days, both pro and con. I’m no expert by any means, but here’s what I’ve come up with.

Pro:

  • The potential to determine whether the adrenal gland with the tumor is really the one that is overproducing aldosterone. It is not unheard of for the tumor to just be there, “sitting there acting dumb” as they say, and meanwhile the other adrenal is the one that is overproducing, either due to hyperplasia or a tumor too small to be seen by CT scan.
  • The potential to rule out bilateral disease. If the condition is bilateral, that means no surgery, plain and simple. And medication for life.

Con:

  • Notice I said “the potential” in the above statements. This is because it’s difficult to catheterize the right adrenal, which can result in a false negative, or just an inconclusive result. Which means repeating the procedure.
  • It can be a pretty gnarly procedure. I mean, hello, they are catheterizing your femoral veins! There is one moderately-unpleasant account here and one less-eventful account here, for further reading. And an extremely disturbing account here, but that one is the worst story I’ve encountered.
  • As the right adrenal is the difficult one to access, it has the greater chance of being damaged in the procedure. Which in my case, assuming the left one (with the tumor) is the bad one, would leave me with two bad adrenal glands. In which case they would take the right one out, even if it wasn’t the aldosterone-producing one, and leave the left one in, in which case it would mean medication for life.

I talked this out on the phone with a friend last night, and his reaction was “Why the hell would you submit yourself to that test?” Outside of it being standard protocol for anybody over 40, I couldn’t think of an answer. 24 hours later, though, I have one: because if I don’t have the AVS, and they just go ahead and take out the left adrenal, if they’re wrong, the worst that will happen is medication for life. If I do have the AVS, and something goes horribly wrong, well – again, medication for life.

Notice the commonality here? To me, the worst possible outcome here is to spend the rest of my life on a drug. If it happens, it happens; but if I get the AVS, and they determine that it’s the left, and they take out the left, I’m spared that fate. If I get the AVS and they determine it’s bilateral, I’ll know I’ve done everything I could to avoid a lifetime of medication. And, worst case, if I get the AVS and something goes wrong, well – that’s the same outcome as if I skipped the AVS and went straight to the surgery without knowing for sure it was the left or was not bilateral.

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So that’s my layperson’s take on it. I felt better after another PA patient pointed me toward a link from the American Association of Endocrine Surgeons, with the following chart outlining the preferred protocol:

There it is, in black and white, spelled out: age >40 -> selective venous sampling -> unilateral -> surgery. Not that after all that I’ve been through I place a lot of faith in the authority of any American medical organization, but the logic behind this flow chart is hard to find fault with.

And honestly, provided I am able to find an experienced interventional radiologist who has done this, successfully, many times before, I’m more worried about something going wrong with the insurance side of things than the actual medical side of things. It’s a $28,000 procedure. Supposedly covered at 100%.

So. I guess I’m doing it.

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No surprises here.

My doctor just called with the results of last week’s aldosterone suppression test. I’m not going to go into numbers until I have a hard copy in front of me, but here’s the condensed version.

My aldosterone levels, both plasma and urine, were off the charts high. This is what was expected, and confirms that I have PA. The only unusual thing that turned up was that I did not excrete as much sodium as is typical, but that’s probably because I don’t eat the standard American processed food diet and avoid sodium like it’s the devil. And that probably accounts for the extra two pounds I’ve been carrying around since last week, grumble grumble.

So – there are two schools of thought as to what my next step will be: adrenal vein sampling (AVS), or surgery? My doctor thinks it would be safe for me to skip adrenal vein sampling entirely and just have the left adrenal taken out. Me, I’m not so sure; I feel like I’ve had this undiagnosed for so long that I would like to be good and certain that the problem is only unilateral before taking that step.

From what I hear, the AVS is trickier than the actual surgery, but I’ll be getting it done by the head of interventional radiology at UCLA, so I’m pretty confident that risks will be minimal. The biggest downside? Results are often inaccurate or inconclusive, as the right adrenal is difficult to catheterize. And, my tumor is on the left adrenal. Which means that even after doing AVS, there’s still a possibility that the right adrenal could also be affected. So it’s in the realm of possibility that I could have the surgery and still have problems and still get stuck on meds for the rest of my life.

But you know – and these are words that have become my motto as of lately – that’s a chance I’m willing to take. I’d rather go into this knowing that I did everything possible to confirm the diagnosis before I undergo surgery.

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For those curious about AVS – this article seems to be the place to start. It’s a bit of a how-to manual but gives a pretty clear description of what to expect.