A note to Peggy and Jan and anyone else considering surgery

August 10, 2008

Hi. My name is . I, too, had tumor on one of my adrenal glands

and feared getting an AVS. However, I am glad I did and it was, as

Jan put it about surgery, " a piece of cake. " Get someone who has

done these procedures many times--you need to find a specialist in

aldosteronism, not just any old endo. If you do, it shouldn't be any

more dangerous than surgery would be, possibly less so. I was

perfectly fine afterwards, and it didn't take long.

The AVS found that aldosterone was being produced in BOTH my adrenal

glands, not just the one with the tumor, which is very common in aldo

patients. If I had had my way, I would've had the adrenal gland with

the tumor out, and I would still be suffering.

Instead, I went on Spiro and, fortunately, it did not adversely

affect me. There are other meds if it does--a new one that's

supposed to be even more effective.

My BP was regularly 200-210 over 120-128 and even up to 135

(diastolic) in the ER a couple of times. I was ready to stroke out,

even though I was on several BP meds.

I went to NIH for an adrenal neoplasm study and they took care of me

like I was in a spa. I had the best experts in the field, had the

AVS, had a full cardiac workup when I had chest pains, and would have

had the surgery--all paid for by federal research funds--if it had

been indicated. Thank goodness I didn't. I have my two admittedly

messed up adrenal glands (actually, it all starts in the pituitary,

as NIH explained) but at least I have two of them.

ly, I think anyone who undergoes surgery without AVS is

foolish. You're gambling, and with very poor odds. If you are

willing to go under the knife for surgery, get an AVS first. I can't

say this enough; what's the point of having surgery if it is not

warranted and will not even be helpful?

Obviously, Peggy was not properly informed by her surgeon about all

of this before she had hers. That's a shame, if not a crime. We are

all responsible for educating ourselves. There is plenty of good

information out there. Most doctors don't have a CLUE about PA,

including most endocrinologists. Get an expert and don't settle for

less. Your life is at stake.

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