Re: up next, AVS

[Guest guest]

Two different kinds. One is just green tea, the other is green tea, lemon

verbena, spearmint leaves, and lemongrass.

> > > > > > >

> > > > > > > > As you have noted, there is very little information out there on

> > > > > > the

> > > > > > > > pros and cons of surgery vs. meds. As Dr. Grim has mentioned, we

> > > > > > > > only hear from the people who are having problems. Once the

> > > > > > problems

> > > > > > > > are solved, the generally don't hang around posting to message

> > > > > > > > boards, or seek them out in the first place.

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

> I read some others BP's they post and they often report theirs in the

140-160/90-110 range off meds. I walked around nearly always even on 4-5 meds

(but never spiro) at the 160-170/110-130ish and often the diastolic hit 140.

, while *on* meds - CCBs and ARBs - my BP was in the 160s/100s range. Once

I stopped those, it dropped to the 140s/90s.

[Guest guest]

Thanks Marie - sounds like you had a pretty bad experience! But everything

turned out okay and they got the correct one out, right? That's my biggest

concern - not that I'm happy about the prospect of a difficult procedure, I just

want to know that they did everything possible to find the correct source of the

aldo production.

> >

> >

> > I had my left adrenal removed in December 2010....I had a CT scan that

showed a Mass on my right adrenal but my endo said I need the AVS to make sure

that is the right one to remove.........LOW AN ..BEHOLD it was not the right

adrenal that was causing my problems it was the left one......Thanks to the AVS

which I had problems with but all worked out, I would have had the wrong one

removed. and probably would have to take meds for the rest of my

life..........Just though you would like something else to think about before

you have surgery......which could be the wrong adrenal removed......or maybe the

right one.........you just never know........and get someone that has alot of

knowledge with AVS and with experience....Just my opinion.........

> > Marie

> > Re: up next, AVS

> >

> >

> >

> > Interestingly I'm at the same stage - doctor called today with a

positive diagnosis of primary aldosteronism. Given my age (under 40 - just),

general health (great), blood test results (clear cut) and an MRI that revealed

a 21mm adenoma on one adrenal gland, she's 97% sure (no idea where that figure

came from - will meet in person next week to find out more) that it's an APA. So

is recommending skipping the AVS (which would only give a 99% certainty at best)

and going straight to the adrenalectomy. I'm tending to agree - and certainly

have no wish to be on drugs for life so am naturally leaning towards surgery vs.

Spiro (although I'll be going on that for the short term).

> >

> > There have been limited studies here (I'm in Z�rich, Switzerland) that

surgery in the case of APA tends to be very effective. When I was in the earlier

stages of diagnosis, I posted on this board to try and understand the pros and

cons of surgery vs. drugs and still haven't seen a clear balance of argument so

I'm sure there are points I've missed. Now I'm just trusting the judgement of my

local experts.

> >

>

[Guest guest]

Possibly. What meds are you taking? There was someone else on this board who

mentioned that she stopped taking a CCB and her BP went down.

>

>

> Subject: Re: up next, AVS

> To: hyperaldosteronism

> Date: Thursday, March 3, 2011, 8:31 PM

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> > I read some others BP's they post and they often report theirs in the

140-160/90-110 range off meds. I walked around nearly always even on 4-5 meds

(but never spiro) at the 160-170/110-130ish and often the diastolic hit 140.

>

>

>

> , while *on* meds - CCBs and ARBs - my BP was in the 160s/100s range.

Once I stopped those, it dropped to the 140s/90s.

>

[Guest guest]

Why can't you still do that? You haven't had the operation yet have you? Any

time I've had a proceedure they ask if I have any reservations before I sign the

form, it sounds like you do. I'm sure they will still be there to do the

operation if you want to try DASHing first. Good Luck!

> >>

> >>>

> >>> I've been on this list since 2005. I've seen many come through who got

surgery; nearly all after having AVS. After a while, they just disappear. I

assume they got well. I've only seen one (Dave, now deceased) who had an

adrenalectomy at Hospital in St. Louis, and continued to have PA. I

think that was long before AVS was routine. For people who continue to have

problems without following the advice to have AVS before surgery, I doubt we'd

hear much from them.

> >>>

> >>>

> >>>

> >>> Val

> >>>

> >>>

> >>>

> >>> From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of msmith_1928

> >>>

> >>>

> >>> Hi Hester, sounds like a pretty similar situation to mine - otherwise

great general health, clear-cut lab results, presence of an adenoma. I think my

specialist may have said based on all of that, he's 99% sure that the adenoma is

the culprit and that skipping the AVS is an option.

> >>>

> >>> As you have noted, there is very little information out there on the pros

and cons of surgery vs. meds. As Dr. Grim has mentioned, we only hear from the

people who are having problems. Once the problems are solved, the generally

don't hang around posting to message boards, or seek them out in the first

place.

> >>>

> >>> It's very nerve-wracking, to say the least! Please keep us posted of your

progress and your decisions.

> >>>

> >>>

> >>>

> >>>

> >>

> >

> >

>

[Guest guest]

Did you just have Laprescopic Surgery? They tell me thar will cause it! ;>})

>

> > >

>

> > > My doctor just called with the results of last week's aldosterone

suppresion test/oral sodium loading test. As expected, my aldo was off the

charts high, both serum and urine. (I can post numbers when I have a hard copy

in front of me, if anyone is interested.) The interesting thing my doctor

observed was that I did not excrete a lot of sodium - he believes it's because

my diet is very low sodium. (I believe it's still trapped in my body in the form

of the extra 2 pounds I've been carrying around since the test!)

>

> > >

>

> > > This gives me the go-ahead for AVS, or, interestingly, he said I could

skip the AVS and have the adrenalectomy. I want to be good and certain that the

culprit is my left adrenal before surgery, so I think I'm going through with the

AVS first. I'm aware of the high risk of inconclusive results, and the risks of

the procedure in general.

>

> > >

>

> > > This brings up two questions: how common is it to skip the AVS entirely? I

only heard of that recently from another member here; I had been under the

impression that standard protocol was AVS before surgery.

>

> > >

>

> > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or

anywhere in the greater Los Angeles area? If you have an interventional

radiologist in the area that you'd recommend, please let me know. Thanks!

>

> > >

>

> > >

>

> > > - msmith1928

>

> > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, aldosterone 42.3,

renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia, no meds currently except 20MEQ K 2x/day; low sodium, fructose- and

grain-free diet

>

> > >

>

> >

>

[Guest guest]

,

Thanks for that link. It does support the advice I'm getting which is great

news. I'm a clear 'go down the left hand side of the flow chart'. Interesting

that 40 seems to be such a cut off and I don't know how much research has gone

into that (I'm sure some on here do) since other factors must be just as

critical. Still if I base a decision on that link alone, I would be leaping past

AVS.

Hester

> > >

> > > My doctor just called with the results of last week's aldosterone

suppresion test/oral sodium loading test. As expected, my aldo was off the

charts high, both serum and urine. (I can post numbers when I have a hard copy

in front of me, if anyone is interested.) The interesting thing my doctor

observed was that I did not excrete a lot of sodium - he believes it's because

my diet is very low sodium. (I believe it's still trapped in my body in the form

of the extra 2 pounds I've been carrying around since the test!)

> > >

> > > This gives me the go-ahead for AVS, or, interestingly, he said I could

skip the AVS and have the adrenalectomy. I want to be good and certain that the

culprit is my left adrenal before surgery, so I think I'm going through with the

AVS first. I'm aware of the high risk of inconclusive results, and the risks of

the procedure in general.

> > >

> > > This brings up two questions: how common is it to skip the AVS entirely? I

only heard of that recently from another member here; I had been under the

impression that standard protocol was AVS before surgery.

> > >

> > > And, long shot I know, but - anybody here have their AVS done at UCLA? Or

anywhere in the greater Los Angeles area? If you have an interventional

radiologist in the area that you'd recommend, please let me know. Thanks!

> > >

> > >

> > > - msmith1928

> > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, aldosterone 42.3,

renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia, no meds currently except 20MEQ K 2x/day; low sodium, fructose- and

grain-free diet

> > >

> >

>

[Guest guest]

Again, I want to make sure you know that I have no ownership in this decision so

you do what you feel is best for you. I only hope I can provide you some good

unbiased information to help you with the process.

I can tell you I had a few years writing statistical programs for a large

insurance company so I am pretty good at figuring out how to " work the numbers " .

The group that came up with that chart I provided you apparently certify all the

Endocrine Surgeons of North and South America as well as some international

countries, trustworthy I guess!

To the numbers: What is the distribution of tumors, by age? (Us older

individuals have more time to grow extra parts!) I personally am beginning to

think this is important enough that I consider any survey that can't or doesn't

is ambigious at best! I know one of our surveys asks age at first notification,

it might be fun to check it out.

What is the risk of problems with the AVS? (Ruptured vein or inconclusive

results = adrenal removal I believe.) What happens if the one you rupture is

the one you wanted to keep? Now you are left with none!

What do you do with the tumor if it isn't producing? The instructions I

remember is scan every 6-12 mos. to ensure it isn't growing and becomming

maliginant. Assuming you are mid-life at 40 that's 40 to 60 xrays, did somebody

say radiation!

I'm going to quit fot the night, I've probably said enough to start a good

discussion. Besides, my " bad eye: " is trying to take over so I have been 1 key

off all night, ignore the typo's! (I also just " lost " most of a paragraph , let

me know if you find it!)

> > > >

> > > > My doctor just called with the results of last week's aldosterone

suppresion test/oral sodium loading test. As expected, my aldo was off the

charts high, both serum and urine. (I can post numbers when I have a hard copy

in front of me, if anyone is interested.) The interesting thing my doctor

observed was that I did not excrete a lot of sodium - he believes it's because

my diet is very low sodium. (I believe it's still trapped in my body in the form

of the extra 2 pounds I've been carrying around since the test!)

> > > >

> > > > This gives me the go-ahead for AVS, or, interestingly, he said I could

skip the AVS and have the adrenalectomy. I want to be good and certain that the

culprit is my left adrenal before surgery, so I think I'm going through with the

AVS first. I'm aware of the high risk of inconclusive results, and the risks of

the procedure in general.

> > > >

> > > > This brings up two questions: how common is it to skip the AVS entirely?

I only heard of that recently from another member here; I had been under the

impression that standard protocol was AVS before surgery.

> > > >

> > > > And, long shot I know, but - anybody here have their AVS done at UCLA?

Or anywhere in the greater Los Angeles area? If you have an interventional

radiologist in the area that you'd recommend, please let me know. Thanks!

> > > >

> > > >

> > > > - msmith1928

> > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, aldosterone 42.3,

renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia, no meds currently except 20MEQ K 2x/day; low sodium, fructose- and

grain-free diet

> > > >

> > >

> >

>

[Guest guest]

By the information in this link. Any one less then 40 and tests show they have

PA has CT done to see if there is a tumor. If tumor shows automaticiy have it

removed with out doing AVS.

If you are over 40 they you have AVS to see if side with tumor is the side to

remove.

> > > > >

> > > > > My doctor just called with the results of last week's aldosterone

suppresion test/oral sodium loading test. As expected, my aldo was off the

charts high, both serum and urine. (I can post numbers when I have a hard copy

in front of me, if anyone is interested.) The interesting thing my doctor

observed was that I did not excrete a lot of sodium - he believes it's because

my diet is very low sodium. (I believe it's still trapped in my body in the form

of the extra 2 pounds I've been carrying around since the test!)

> > > > >

> > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could

skip the AVS and have the adrenalectomy. I want to be good and certain that the

culprit is my left adrenal before surgery, so I think I'm going through with the

AVS first. I'm aware of the high risk of inconclusive results, and the risks of

the procedure in general.

> > > > >

> > > > > This brings up two questions: how common is it to skip the AVS

entirely? I only heard of that recently from another member here; I had been

under the impression that standard protocol was AVS before surgery.

> > > > >

> > > > > And, long shot I know, but - anybody here have their AVS done at UCLA?

Or anywhere in the greater Los Angeles area? If you have an interventional

radiologist in the area that you'd recommend, please let me know. Thanks!

> > > > >

> > > > >

> > > > > - msmith1928

> > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, aldosterone 42.3,

renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia, no meds currently except 20MEQ K 2x/day; low sodium, fructose- and

grain-free diet

> > > > >

> > > >

> > >

> >

>

[Guest guest]

after you go to files on the left top just under the add you will see create

folder click on that fill in the information and save. then go to folder and top

left side click add file this then lets you browse to where the file you want to

add is thet click upload. Or something like that

> > > > > > > >

> > > > > > > > My doctor just called with the results of last week's

> > aldosterone suppresion test/oral sodium loading test. As expected,

> > my aldo was off the charts high, both serum and urine. (I can post

> > numbers when I have a hard copy in front of me, if anyone is

> > interested.) The interesting thing my doctor observed was that I did

> > not excrete a lot of sodium - he believes it's because my diet is

> > very low sodium. (I believe it's still trapped in my body in the

> > form of the extra 2 pounds I've been carrying around since the test!)

> > > > > > > >

> > > > > > > > This gives me the go-ahead for AVS, or, interestingly,

> > he said I could skip the AVS and have the adrenalectomy. I want to

> > be good and certain that the culprit is my left adrenal before

> > surgery, so I think I'm going through with the AVS first. I'm aware

> > of the high risk of inconclusive results, and the risks of the

> > procedure in general.

> > > > > > > >

> > > > > > > > This brings up two questions: how common is it to skip

> > the AVS entirely? I only heard of that recently from another member

> > here; I had been under the impression that standard protocol was AVS

> > before surgery.

> > > > > > > >

> > > > > > > > And, long shot I know, but - anybody here have their AVS

> > done at UCLA? Or anywhere in the greater Los Angeles area? If you

> > have an interventional radiologist in the area that you'd recommend,

> > please let me know. Thanks!

> > > > > > > >

> > > > > > > >

> > > > > > > > - msmith1928

> > > > > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule,

> > aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking

> > supplements); 25mg spiro caused gynecomastia, no meds currently

> > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

a, thank you for your input on this. Your story is exactly why I am

insisting on AVS before surgery, even though my doctor is certain that the

adenoma visible on my CT scan is aldo producing. I can only hope that my AVS

experience is as successful as yours!

- msmith1928

45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, aldosterone 42.3, renin 0.5,

potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia, no

HTN meds; other meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg,

and cyclobenzaprine 5mg as needed; low sodium, fructose- and grain-free diet

> >

>

[Guest guest]

Then just open the folder you want to upload to. Will still see the add files

link. Will have to click Send a message to the group announcing this file box.

> > > > > > > > > >

> > > > > > > > > > My doctor just called with the results of last week's

> > > > aldosterone suppresion test/oral sodium loading test. As expected,

> > > > my aldo was off the charts high, both serum and urine. (I can post

> > > > numbers when I have a hard copy in front of me, if anyone is

> > > > interested.) The interesting thing my doctor observed was that I

> > did

> > > > not excrete a lot of sodium - he believes it's because my diet is

> > > > very low sodium. (I believe it's still trapped in my body in the

> > > > form of the extra 2 pounds I've been carrying around since the

> > test!)

> > > > > > > > > >

> > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly,

> > > > he said I could skip the AVS and have the adrenalectomy. I want to

> > > > be good and certain that the culprit is my left adrenal before

> > > > surgery, so I think I'm going through with the AVS first. I'm

> > aware

> > > > of the high risk of inconclusive results, and the risks of the

> > > > procedure in general.

> > > > > > > > > >

> > > > > > > > > > This brings up two questions: how common is it to skip

> > > > the AVS entirely? I only heard of that recently from another

> > member

> > > > here; I had been under the impression that standard protocol was

> > AVS

> > > > before surgery.

> > > > > > > > > >

> > > > > > > > > > And, long shot I know, but - anybody here have their

> > AVS

> > > > done at UCLA? Or anywhere in the greater Los Angeles area? If you

> > > > have an interventional radiologist in the area that you'd

> > recommend,

> > > > please let me know. Thanks!

> > > > > > > > > >

> > > > > > > > > >

> > > > > > > > > > - msmith1928

> > > > > > > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule,

> > > > aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking

> > > > supplements); 25mg spiro caused gynecomastia, no meds currently

> > > > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

How much less?

> > > > > > >

> > > > > > > My doctor just called with the results of last week's

> > aldosterone suppresion test/oral sodium loading test. As expected,

> > my aldo was off the charts high, both serum and urine. (I can post

> > numbers when I have a hard copy in front of me, if anyone is

> > interested.) The interesting thing my doctor observed was that I did

> > not excrete a lot of sodium - he believes it's because my diet is

> > very low sodium. (I believe it's still trapped in my body in the

> > form of the extra 2 pounds I've been carrying around since the test!)

> > > > > > >

> > > > > > > This gives me the go-ahead for AVS, or, interestingly, he

> > said I could skip the AVS and have the adrenalectomy. I want to be

> > good and certain that the culprit is my left adrenal before surgery,

> > so I think I'm going through with the AVS first. I'm aware of the

> > high risk of inconclusive results, and the risks of the procedure in

> > general.

> > > > > > >

> > > > > > > This brings up two questions: how common is it to skip the

> > AVS entirely? I only heard of that recently from another member

> > here; I had been under the impression that standard protocol was AVS

> > before surgery.

> > > > > > >

> > > > > > > And, long shot I know, but - anybody here have their AVS

> > done at UCLA? Or anywhere in the greater Los Angeles area? If you

> > have an interventional radiologist in the area that you'd recommend,

> > please let me know. Thanks!

> > > > > > >

> > > > > > >

> > > > > > > - msmith1928

> > > > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule,

> > aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking

> > supplements); 25mg spiro caused gynecomastia, no meds currently

> > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Any one can add file but only moderators and the one that add file can edit or

delete them

> > > > > > > > > > >

> > > > > > > > > > > My doctor just called with the results of last week's

> > > > > aldosterone suppresion test/oral sodium loading test. As expected,

> > > > > my aldo was off the charts high, both serum and urine. (I can post

> > > > > numbers when I have a hard copy in front of me, if anyone is

> > > > > interested.) The interesting thing my doctor observed was that I

> > > did

> > > > > not excrete a lot of sodium - he believes it's because my diet is

> > > > > very low sodium. (I believe it's still trapped in my body in the

> > > > > form of the extra 2 pounds I've been carrying around since the

> > > test!)

> > > > > > > > > > >

> > > > > > > > > > > This gives me the go-ahead for AVS, or, interestingly,

> > > > > he said I could skip the AVS and have the adrenalectomy. I want to

> > > > > be good and certain that the culprit is my left adrenal before

> > > > > surgery, so I think I'm going through with the AVS first. I'm

> > > aware

> > > > > of the high risk of inconclusive results, and the risks of the

> > > > > procedure in general.

> > > > > > > > > > >

> > > > > > > > > > > This brings up two questions: how common is it to skip

> > > > > the AVS entirely? I only heard of that recently from another

> > > member

> > > > > here; I had been under the impression that standard protocol was

> > > AVS

> > > > > before surgery.

> > > > > > > > > > >

> > > > > > > > > > > And, long shot I know, but - anybody here have their

> > > AVS

> > > > > done at UCLA? Or anywhere in the greater Los Angeles area? If you

> > > > > have an interventional radiologist in the area that you'd

> > > recommend,

> > > > > please let me know. Thanks!

> > > > > > > > > > >

> > > > > > > > > > >

> > > > > > > > > > > - msmith1928

> > > > > > > > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule,

> > > > > aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking

> > > > > supplements); 25mg spiro caused gynecomastia, no meds currently

> > > > > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > >

> > >

> > >

> >

>

[Guest guest]

Dr Grim, thank you for clarifying that. I've seen reports of with/without and

was wondering why there seems to be two schools of thought on this - why would

some do it without ACTH?

> > > >

> > >

> >

> >

> >

>

[Guest guest]

you are on many drugs it is possable that some of you problems can be due

to them. Can the this link out and fing out.

http://www.drugs.com/drug_interactions.html

> > > > >

> > > > > My doctor just called with the results of last week's aldosterone

suppresion test/oral sodium loading test. As expected, my aldo was off the

charts high, both serum and urine. (I can post numbers when I have a hard copy

in front of me, if anyone is interested.) The interesting thing my doctor

observed was that I did not excrete a lot of sodium - he believes it's because

my diet is very low sodium. (I believe it's still trapped in my body in the form

of the extra 2 pounds I've been carrying around since the test!)

> > > > >

> > > > > This gives me the go-ahead for AVS, or, interestingly, he said I could

skip the AVS and have the adrenalectomy. I want to be good and certain that the

culprit is my left adrenal before surgery, so I think I'm going through with the

AVS first. I'm aware of the high risk of inconclusive results, and the risks of

the procedure in general.

> > > > >

> > > > > This brings up two questions: how common is it to skip the AVS

entirely? I only heard of that recently from another member here; I had been

under the impression that standard protocol was AVS before surgery.

> > > > >

> > > > > And, long shot I know, but - anybody here have their AVS done at UCLA?

Or anywhere in the greater Los Angeles area? If you have an interventional

radiologist in the area that you'd recommend, please let me know. Thanks!

> > > > >

> > > > >

> > > > > - msmith1928

> > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, aldosterone 42.3,

renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia, no meds currently except 20MEQ K 2x/day; low sodium, fructose- and

grain-free diet

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hard to keep track of our train of thought when you mix file uploads with our

AVS discussion! (Maybe it is because I am such a rooky!

> > > > > > > >

> > > > > > > > My doctor just called with the results of last week's

> > aldosterone suppresion test/oral sodium loading test. As expected,

> > my aldo was off the charts high, both serum and urine. (I can post

> > numbers when I have a hard copy in front of me, if anyone is

> > interested.) The interesting thing my doctor observed was that I did

> > not excrete a lot of sodium - he believes it's because my diet is

> > very low sodium. (I believe it's still trapped in my body in the

> > form of the extra 2 pounds I've been carrying around since the test!)

> > > > > > > >

> > > > > > > > This gives me the go-ahead for AVS, or, interestingly,

> > he said I could skip the AVS and have the adrenalectomy. I want to

> > be good and certain that the culprit is my left adrenal before

> > surgery, so I think I'm going through with the AVS first. I'm aware

> > of the high risk of inconclusive results, and the risks of the

> > procedure in general.

> > > > > > > >

> > > > > > > > This brings up two questions: how common is it to skip

> > the AVS entirely? I only heard of that recently from another member

> > here; I had been under the impression that standard protocol was AVS

> > before surgery.

> > > > > > > >

> > > > > > > > And, long shot I know, but - anybody here have their AVS

> > done at UCLA? Or anywhere in the greater Los Angeles area? If you

> > have an interventional radiologist in the area that you'd recommend,

> > please let me know. Thanks!

> > > > > > > >

> > > > > > > >

> > > > > > > > - msmith1928

> > > > > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule,

> > aldosterone 42.3, renin 0.5, potassium <2.9 (when not taking

> > supplements); 25mg spiro caused gynecomastia, no meds currently

> > except 20MEQ K 2x/day; low sodium, fructose- and grain-free diet

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Looks like you have it right, again this is one group (who happens to represent

a large section of the Endocrine Surgeons of the world). As Dr. G. pointed out,

they do have a vested interest in surgery but I feel their highest priority is

still honesty and what's best for the patient. They are also the first of many

to validate their recommendation - they have the adnoma in their hand! If you

are under 40 and elect to do the AVS and it is negative let us and the world

know, it will be one step in proving that there should not be descrimination

based on age! If you are 40 or older and skip the AVS anyway and find the tumor

was producing CONGRATULATIONS, you beat the odds! You should take the $27,000

you saved and head to Los Vegas and see just how lucky you really are! (You

might consider starting a fund to help the other fools that follow your path and

had a needless operation IF you are a winner!)

(Did I just call myself a fool? NO, REMEMBER I HAVE AN ALTERIOR MOTIVE - the

pain!)

Again, it's your body; You decide what's best for you and then go for it!

Whatever you decide, let us know so maybe we can make it easier and better for

those that follow us! GOOD LUCK and " B " HEALTHY!

> > > > > >

> > > > > > My doctor just called with the results of last week's aldosterone

suppresion test/oral sodium loading test. As expected, my aldo was off the

charts high, both serum and urine. (I can post numbers when I have a hard copy

in front of me, if anyone is interested.) The interesting thing my doctor

observed was that I did not excrete a lot of sodium - he believes it's because

my diet is very low sodium. (I believe it's still trapped in my body in the form

of the extra 2 pounds I've been carrying around since the test!)

> > > > > >

> > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I

could skip the AVS and have the adrenalectomy. I want to be good and certain

that the culprit is my left adrenal before surgery, so I think I'm going through

with the AVS first. I'm aware of the high risk of inconclusive results, and the

risks of the procedure in general.

> > > > > >

> > > > > > This brings up two questions: how common is it to skip the AVS

entirely? I only heard of that recently from another member here; I had been

under the impression that standard protocol was AVS before surgery.

> > > > > >

> > > > > > And, long shot I know, but - anybody here have their AVS done at

UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional

radiologist in the area that you'd recommend, please let me know. Thanks!

> > > > > >

> > > > > >

> > > > > > - msmith1928

> > > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, aldosterone

42.3, renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia, no meds currently except 20MEQ K 2x/day; low sodium, fructose- and

grain-free diet

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

As you should, you OLD lady! You might take that chart and ask your Dr. why

s/he recommended skipping the AVS. Might be a good time to review credentials!

> > >

> >

>

[Guest guest]

Probably a momentary oversight - I constantly have to remind my doctors that I'm

an old middle-aged lady Apparently I look/act younger, whatever that means!

But I am going to print the chart out for him regardless. In his 30+ years of

practice, I'm his 6th confirmed PA case, and only the second to opt for surgery,

so he may not be up to speed on the protocol.

> > > >

> > >

> >

>

[Guest guest]

Actually he does - of his 6 PA patients, one opted for adrenalectomy 15 years

ago. She still sees him, and says she is doing well. I'm planning on asking him

to put me in touch with her, but with HIPAA and all that, who knows...

> > > > >

> > > >

> > >

> >

> >

>

[Guest guest]

a,

I hope I didn't exagerate the risks of pain of AVS, I certainly didn't mean to.

I don't know how old you were 5 yrs. ago, actually, I don't even know if there

was an age check back then! Anyway, it looks like the correct decision was

made.

NOTE: I OR WHOMEVER LED ME TO BELIEVE THAT YOU HAD TO RE-SCAN ANNUALLY WAS

INCORRECT ---- BE SURE TO READ THE REVISED POSITION:

Treatment: What is the best treatment?

Patients with a functional tumor (i.e. making too much hormone) should have an

operation to remove the adrenal gland and tumor. For patients with

non-functional tumors, the size of the tumor and imaging characteristics will

determine if an operation is indicated. If the tumor has suspicious

characteristics on imaging (i.e. irregular borders, evidence of invasion, etc),

then it should be removed. In 2002, the National Institutes of Health released a

consensus statement with the following guidelines for who should have an

adrenalectomy based on the size of the tumor:

Size of Tumor Risk of Recommendation

Cancer

Less than 4 cm 2 to 3% Observation

4 to 6 cm 7% Adrenalectomy (if the patient is healthy

enough)

> 6 cm 25% Adrenalectomy

For tumors between 4 and 6 cm in size, the general recommendation is to remove

it, but the patient's age, other health problems, and imaging characteristics of

the tumor should be taken into consideration. If there are reasons the patient

may not tolerate an operation, then observation is the best treatment. Since CAT

scan and MRI underestimate the size of adrenal tumors (i.e. the adrenal tumors

are often bigger in the operating room than on CAT scan), many physicians use

slightly different size criteria and recommend observing tumors less than 3 cm,

removing any tumor greater than 5 cm, and removing tumors between 3 and 5 cm if

the patient is healthy enough.

If the tumor is not removed, it is important to have close follow-up to see if

the tumor becomes functional or if it grows. Studies have shown that most

adrenal incidentalomas that are observed will not grow or become hyperactive.

Only 5 to 25% grow, while 3 to 4% shrink. While up to 20% of tumors will become

functional, it is unlikely to happen in tumors smaller than 3 cm. The risk that

a tumor will become hyperactive is greatest in the first 3 to 4 years and

Cushing's Syndrome is the most likely problem to develop.

For patients who are being followed for adrenal incidentaloma (Adrenal

incidentaloma - an asymptomatic adrenal tumor that is discovered on an imaging

test (CAT scan, MRI, etc) which was ordered to evaluate a problem that is

unrelated to adrenal disease) the National Institutes of Health recommend:

- repeat CAT scan 6 to 12 months after diagnosis

- repeat hormone testing every 12 months for 5 years

(including low dose dexamethasone suppression test, plasma metanephrines, and

plasma aldosteroneAldosterone - a mineralocorticoid that controls blood

Pressure/renin)

If the tumor does not grow after the first year, then repeat CAT scan may not be

necessary.

*********************************************************

This information was obtained from The American Association of Endocrine

Surgeons' (AAES) Website (www.endocrinesurgery.org) click on the " Patient

Education Site " on the right and you should see a picture of adrenal glands on

the left and if you click on them you'll find a wealth of information - Happy

Browsing!

*********************************************************

> >

>

[Guest guest]

First, I'm not on nearly as many drugs as I was on a short time ago! I'm down to

3 BP meds (yesterday it was 2 but I found out you don't go from 400 mg of

METOPROLOL TARTRATE to zero overnight!) So back on to MT and AMLODIPINE BESYLAT

and LISINOPRIL. The replacement drugs they have me on are FUROSEMIDE 40MG and

SPIRONOLACTONE 25MG x 2. (That cocktail of drugs gave me a 105/58 BP for last

week with an ave. for the month of 110/60.) That is why it is time to loose

another one but apparently I have to wean down and can't just stop like I did

the rest. Dr.W will be in Monday and we will figure out what/when & how.

Regarding your suggestion, Did you run my meds. and get a result of, " May cause

blue balls or something similar? " If it is just something you think may be

possible, I'll be looking for that after the current testing comes to conclusion

if and when it fails. I learned many years ago troubleshooting computer

problems that you only take one path at a time and also limit the number of

changes so you know what caused a change if something unexpected happened.

(That is how I knew to go back to the MP and wait for Dr.W when Heart Rate went

to 115 BPM!)

> > > > > >

> > > > > > My doctor just called with the results of last week's aldosterone

suppresion test/oral sodium loading test. As expected, my aldo was off the

charts high, both serum and urine. (I can post numbers when I have a hard copy

in front of me, if anyone is interested.) The interesting thing my doctor

observed was that I did not excrete a lot of sodium - he believes it's because

my diet is very low sodium. (I believe it's still trapped in my body in the form

of the extra 2 pounds I've been carrying around since the test!)

> > > > > >

> > > > > > This gives me the go-ahead for AVS, or, interestingly, he said I

could skip the AVS and have the adrenalectomy. I want to be good and certain

that the culprit is my left adrenal before surgery, so I think I'm going through

with the AVS first. I'm aware of the high risk of inconclusive results, and the

risks of the procedure in general.

> > > > > >

> > > > > > This brings up two questions: how common is it to skip the AVS

entirely? I only heard of that recently from another member here; I had been

under the impression that standard protocol was AVS before surgery.

> > > > > >

> > > > > > And, long shot I know, but - anybody here have their AVS done at

UCLA? Or anywhere in the greater Los Angeles area? If you have an interventional

radiologist in the area that you'd recommend, please let me know. Thanks!

> > > > > >

> > > > > >

> > > > > > - msmith1928

> > > > > > 45, female, 5'3 " , 120 lbs, 1cm left adrenal nodule, aldosterone

42.3, renin 0.5, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia, no meds currently except 20MEQ K 2x/day; low sodium, fructose- and

grain-free diet

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

You only look 25 from here! And your hair is beautiful!!(My wife is a hair

dresser! ;>)

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I Took that as a " tongue in cheek " but it may be closer to the truth than we

know! (Especially if we have an Ins. Co. running the show and that is as close

to the politics as I care to get!)

> |>

>