Re: Adrenalectomy question

[Guest guest]

In a message dated 11/26/06 6:50:49 PM, oneohiowoman@... writes:

Hello everyone,

I'm new here, have been reading posts for several hours. I've read

several months of posts and dived into the Files section. I hope you

will bear with me as I ask questions that have probably been asked

many times

I am scheduled for a right adrenalectomy on December 11th. All the

blood work, the 24-hour urine tests (2), and the CT scan all show

Conns.

You did not mention adrenal vein sampling (AVS) to improve your risks of being cured or not even operated on.

I have been reading up on Conns for months now. There's lots of

information out there about what Conns is and how it is treated.

What concerns me the most at this point is what to expect after the

surgery (both immediately and long term). My nephrologist

says "overnight in the hospital, have the surgery on Thursday and

you'll probably be back to work on Monday". The urological surgeon

says "2-4 nights in the hospital and out of work for 2-3 weeks". I

read somewhere on this Group, somewhere in the files, that one

should not expect to be back at work before a minimum of six weeks.

So much differing information! Oh, and it'll be laproscopic.

Everyone is different and you can see the range here.

I've

had four surgeries in the last 15 months and each ones recovery

period is longer (which is to be expected with all that anesthesia

and the wear/tear on my poor old body). It will be done at the

Cleveland Clinic and not my little local hospital (not that there's

anything wrong with local hospitals, but...) by a surgeon who

specializes in this area.

Thats a lot of surgeries.

Neither one of the doctors are very forthcoming about information

regarding what happens after the surgery. Perhaps because they see

people a limited amount before/after the surgery? Perhaps because

they are concerned about legal matters? I don't know. I DO know that

the hysterectomy I had 4 months ago came with its own set of post-

surgical issues and I bet this is the same. I'd rather be

forewarned about what to look for that is or isn't good than what I

did after the hysterectomy.

So are there good links to current information?

You are here.

Will anyone share

with me problems/concerns/ with me problems/concerns/<wbr>triumph

have to keep taking the spiro and K? I assume not... and if not, is

it an immediate stop? I hope so, I don't like the side effects of

the spiro (swollen painful breasts, which to someone who's had

estrogen receptive tumors in each breast is a scary thing) and I'm

looking forward to not having to take those huge horse pills (20MeQ

tablets). How often do they check your K levels after surgery?

If you have only one sided disease your BP will be much better to cured. You did not give us details of other problems, how long you have had HTN, what drugs you were on.

Trust your Dr has told you that low sodium V-8 gives you the same K as the horse pills and tastes better.

Also assume you were advised to try the DASH diet to see if you can control your BP with less or not meds to minimze side effects. How many years have you been on spiro? Was Inspra tried?

I'm glad to have finally found this Group and I thank everyone in

advance who is willing to share information with me. I am assuming

that the brain fog I currently am experiencing is the reason I

didn't file you all sooner! So many questions, so little time...

Curious how you found us finally and why not sooner.

LJ

May your pressure be low!

Clarence E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

[Guest guest]

Speaking of conflicting information. . .Dr Grim asks the question " why

should you do a major surgery if you don't know whether the gland in

question (scanned showing a tumor) is overproducing alodsterone? " He

wants an accurate adrenal venous sampling (AVS) study before

recommending surgery at all. Tumors that show up on scans aren't

always the culprit, and not all tumors (especially diffuse or

hyperplasic ones) show up on scans.

But the Bay Area institutions which did AVS have stopped, presumably

for legal reasons. It is a touchy operation (as is adrenalectomy, but

less often botched because the " A " team do those, and capable AVS

people seem rarer), expensive and apparently the legal problems

outweighed University of California's practicum. I say " presumably "

and " apparently " because as a pt, they don't want to reveal the reasons

behind the discontinuance to me. They offer the opinion that half the

time when you have an AVS-identified overproducing tumor, and take the

gland out, people are still overproducing afterward, so why not take

out the gland if a mass is seen on scan? If the pt has low K and the

A/R ratio (blood & repeated 24-hour urine), the odds are about the

same.

Dr Grim has disagreed - suggesting that if the tumored gland is known

to be overproducing (at least), you've eliminated those which aren't,

and some unnecessary surgeries. This logic appeals to me. Surgeons

(and caring primaries) aren't please to let an unknown mass stay in an

adrenal gland though - they want it out and in the path lab. But then,

I've never had AVS. My adrenalectomy was unsuccessful - without AVS,

scan & chems only. Compared to a hysterectomy, this surgery should be

mild, recuperatively speaking. My laporoscopy took about 10 days for

the pain to ease sufficiently for me to work and move, sleep and

exercise per usual, but that varies too, my endocrine surgeon friend

tells me. We have post-op people in here who were taken off their

spiro (or inspra) on 1-3 week taper-downs, and a few mentioned stopping

altogether in a few days (postural hypotension, low BP). But there are

others whose aldrenalectomies did not stop the aldo (myself included).

I don't know your case, but overall, it seems like a 50/50-

proposition. A cure is good, so maybe a worthwhile tossup.

Bilateral adrenalectomies are almost never done unless meds (spiro or

inspra) can't control the BP. Even then, there are some pts who end

up still hyperaldosteronic, and with addison's as well. These are

rolls of the dice, at different probabilities. This info comes from

the UCSF stats files.

Have you had scans showing a tumor or tumors on one or both sides?

Have you experienced the spiro-gynecomastia yourself? How much do you

take per day? Any other meds? Are you on a DASH low sodium diet?

That cut my spiro need by 2/3. How high was your BP before and after

spiro? Have you tried inspra? It is more specific an aldo antagonist,

without the androgen effects, but some people cannot tolerate it. It

is relatively new in practice with most doctors, and they are reluctant

to prescribe it w/o experience.

I have researched the practitioners' attitudes about this, and

hyperaldo is regarded widely as an extremely rare condition, and only

when you show them articles in PUBMED or Medline (like Dr Grim's), most

of which are saying the American perception is now closer to 20 percent

of all HTN cases, and maybe as high as half those who are

" antihypertensive resistant. " Once you show this to them, the

attitides about being corrected vary. . . :-]

I don't know how you could have a patient who was resistant to

antihypertensives and ALSO had PA if you'd tried spiro as a test first

(the pt having low K and a bad A/R ratio). But apparently, most

doctors don't rule PA out first, as medical school teaches. Instead

they try other HTN meds and fall back to hyperaldo testing later. Mine

did. Caused me a 19mm case of LVH (left ventricular hypertrophe),

after 7 years of BP-control failures. That's another breathtaking

negligence, in my opinion. No doctor asked how long I'd had high BP.

They all said " don't worry, there's no hurry. " They didn't even ask to

check Hx.

Many do not like PA (sometimes called Conn's syndrom, but in my hearing

that term is more often used for tumor cases) because it is complicated

to find causes or treatments. The phrase I hear is " after trying

everything I throw up my hands and prescribe aldactone. " They don't

like aldactone, and inspra is fairly new, without longitudinal study.

The ambiguity of the surgery does not please many doctors I've met.

Many don't want to deal with it at all, and send you elsewhere. It is

not a fast-track cause-effect-diagnosis-treatment condition. It takes

time and disciplined experimenting with the pt.

My college friend who is a surgeon specialising in endo has confided

that most doctors do not want to be the one following PA - they don't

do it, so have little knowledge or experience. Not a good situation.

But since it is climbing in the official cause estimates for all HTN,

this may be forced to change.

Especially if we get some government that re-regulates medicine in

favor of the patient - instead of the medicos and drug co's as it is

now.

(;^p

Dave

On Nov 26, 2006, at 4:43 PM, L. Brown wrote:

> Hello everyone,

>

> I'm new here, have been reading posts for several hours. I've read

> several months of posts and dived into the Files section. I hope you

> will bear with me as I ask questions that have probably been asked

> many times

>

> I am scheduled for a right adrenalectomy on December 11th. All the

> blood work, the 24-hour urine tests (2), and the CT scan all show

> Conns.

>

> I have been reading up on Conns for months now. There's lots of

> information out there about what Conns is and how it is treated.

> What concerns me the most at this point is what to expect after the

> surgery (both immediately and long term). My nephrologist

> says " overnight in the hospital, have the surgery on Thursday and

> you'll probably be back to work on Monday " . The urological surgeon

> says " 2-4 nights in the hospital and out of work for 2-3 weeks " . I

> read somewhere on this Group, somewhere in the files, that one

> should not expect to be back at work before a minimum of six weeks.

> So much differing information! Oh, and it'll be laproscopic. I've

> had four surgeries in the last 15 months and each ones recovery

> period is longer (which is to be expected with all that anesthesia

> and the wear/tear on my poor old body). It will be done at the

> Cleveland Clinic and not my little local hospital (not that there's

> anything wrong with local hospitals, but...) by a surgeon who

> specializes in this area.

>

> Neither one of the doctors are very forthcoming about information

> regarding what happens after the surgery. Perhaps because they see

> people a limited amount before/after the surgery? Perhaps because

> they are concerned about legal matters? I don't know. I DO know that

> the hysterectomy I had 4 months ago came with its own set of post-

> surgical issues and I bet this is the same. I'd rather be

> forewarned about what to look for that is or isn't good than what I

> did after the hysterectomy.

>

> So are there good links to current information? Will anyone share

> with me problems/concerns/triumphs of post-surgical care? Will I

> have to keep taking the spiro and K? I assume not... and if not, is

> it an immediate stop? I hope so, I don't like the side effects of

> the spiro (swollen painful breasts, which to someone who's had

> estrogen receptive tumors in each breast is a scary thing) and I'm

> looking forward to not having to take those huge horse pills (20MeQ

> tablets). How often do they check your K levels after surgery?

>

> I'm glad to have finally found this Group and I thank everyone in

> advance who is willing to share information with me. I am assuming

> that the brain fog I currently am experiencing is the reason I

> didn't file you all sooner! So many questions, so little time...

>

> LJ

>

> _