Re: Time to rethink how to move forward with this group. -Hester

[Guest guest]

I'm going to take exception to your " whole lot of opinions " comment. Many times

I reference professional articles so the only opinion I give is that I think

this article may have value - you judge the quality if you choose to review it!

I try to be careful not to practice med. w/o a license!

Most of the time you can determine if you can do the med/dash route in a

relative short time, months not years. Then you need to decide if you WANT to

do it for the rest of your life!(granted amount of MCBs needed may change over

time) You will probably experience this while you wait for surgery also!

If your goal is to be off all BP meds, remember that will NOT happen 50% of the

time (Laboratory Investigation of Primary Aldosteronism

Stowasser,et al.)!

While I have only read the introduction, I recommend you get your hands on and

read " Your Medical Mind, how to decide what is right for you " by Jerome

Groopman,MD and Pamela Hartzband,MD. (You may recall another book, " How Doctors

Think " , written by Dr. Groopman was recommended a few weeks ago. I enjoy his

writings and just had to have this latest offering!)

I figure when I get done reading his books I will be able to write a book, " How

Doctors and Patients Think " ! NOT!

If you want my opinions, I am happy to share them. And if you want one PTN's

experience with progression of secondary SXs of PA I can speak of OSA, COPD,

SUPPLEMENTAL OXYGEN, and probably/possibly DIABETES. I'm also happy to talk

about regression of the same! And finally my experience with the med/diet

option. Just ask but please, start a new thread! I went through much of the

same process you are going through and made my decision 5 months ago!

- 65 yo super ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank

pain. Treating with Meds. And DASH. . Current BP(last week ave): 125/73

Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, and PTSD.

Meds: Duloxetine hcl 80 MG, Mirtazapine 7.5 MG, Metoprolol Tartrate 200 MG,

81mg asprin, Metformin 2000MG and Spironolactone 50 MG.

> >

> > There has been some research posted about the failure of surgery many years

> > later. If you have one adenoma, you could very well develop another on the

> > other adrenal. That's why Dr. Grim recommends DASH, meds first and surgery

> > last. I don't want opinions; I want facts supported by research, or at

> > least by expert opinion.

> >

> > Val

> >

> > From: hyperaldosteronism

> > [mailto:hyperaldosteronism ] On Behalf Of hesterfenwick

> >

> >

> > Maybe it is about how to find the discussions because searching thtough old

> > discussions is nigh-on impossible by thread title. But I never had any

> > response to my 'pros and cons' question beyond being told DASH and meds was

> > the way to go - despite pressing and pressing for the equivalent analysis on

> > surgery. And in the year since then I've seen very little support for

> > surgery. Now in my case (under 40, clear adenoma, BP controlled my minimal

> > meds, PA short term) it was a no-brainer according to all the other research

> > I could lay my hands on.

> >

> > When I got no response on here to surgery questions, I did trawl through Pub

> > Med and every other piece of research I could find - but it would have been

> > lovely to have been able to speed that up by getting some facts on here to

> > begin with. And I'm guessing that's what many others do - they come on here

> > as a first port of call but then move on to doing their own fundamental

> > research or go with their medical teams advice and never come back.

> >

> > It's great, fantastic, that so many of you are fervent supporters of DASH

> > and meds. Really - I absolutely mean that. But that doesn't mean there isn't

> > ever a case for surgery. Now I'll do my best to be equally fervent in

> > support of surgery when I think somebody has a case for it - that's why I'm

> > still here. Because that's how it's all going to work, imho. But I'm not a

> > medic and I won't be up to date with the latest research so I'll never carry

> > as much weight as many of you. So hopefully there will be others around

> > giving an alternative view-point too. And if that isn't welcome then there

> > should be something in the intro about this being a forum for supporting

> > Conn's sufferers through diet and meds rather than it being a general PA

> > support site.

> >

> > H

> >

>

[Guest guest]

Medicine as all based on opinions. In medical stuides very little is stated as

fact.

> > >

> > > There has been some research posted about the failure of surgery many

years

> > > later. If you have one adenoma, you could very well develop another on

the

> > > other adrenal. That's why Dr. Grim recommends DASH, meds first and

surgery

> > > last. I don't want opinions; I want facts supported by research, or at

> > > least by expert opinion.

> > >

> > > Val

> > >

> > > From: hyperaldosteronism

> > > [mailto:hyperaldosteronism ] On Behalf Of hesterfenwick

> > >

> > >

> > > Maybe it is about how to find the discussions because searching thtough

old

> > > discussions is nigh-on impossible by thread title. But I never had any

> > > response to my 'pros and cons' question beyond being told DASH and meds

was

> > > the way to go - despite pressing and pressing for the equivalent analysis

on

> > > surgery. And in the year since then I've seen very little support for

> > > surgery. Now in my case (under 40, clear adenoma, BP controlled my minimal

> > > meds, PA short term) it was a no-brainer according to all the other

research

> > > I could lay my hands on.

> > >

> > > When I got no response on here to surgery questions, I did trawl through

Pub

> > > Med and every other piece of research I could find - but it would have

been

> > > lovely to have been able to speed that up by getting some facts on here to

> > > begin with. And I'm guessing that's what many others do - they come on

here

> > > as a first port of call but then move on to doing their own fundamental

> > > research or go with their medical teams advice and never come back.

> > >

> > > It's great, fantastic, that so many of you are fervent supporters of DASH

> > > and meds. Really - I absolutely mean that. But that doesn't mean there

isn't

> > > ever a case for surgery. Now I'll do my best to be equally fervent in

> > > support of surgery when I think somebody has a case for it - that's why

I'm

> > > still here. Because that's how it's all going to work, imho. But I'm not a

> > > medic and I won't be up to date with the latest research so I'll never

carry

> > > as much weight as many of you. So hopefully there will be others around

> > > giving an alternative view-point too. And if that isn't welcome then there

> > > should be something in the intro about this being a forum for supporting

> > > Conn's sufferers through diet and meds rather than it being a general PA

> > > support site.

> > >

> > > H

> > >

> >

>

[Guest guest]

You cannot prove "facts" or hypotheses. One can only disprove them. e.g. The earth was flat and the center of the universe till we found out it was not.CE Grim MDOn Oct 11, 2011, at 12:54 PM, Francis Bill SUSPECTED PA wrote: Medicine as all based on opinions. In medical stuides very little is stated as fact. > > > > > > There has been some research posted about the failure of surgery many years > > > later. If you have one adenoma, you could very well develop another on the > > > other adrenal. That's why Dr. Grim recommends DASH, meds first and surgery > > > last. I don't want opinions; I want facts supported by research, or at > > > least by expert opinion. > > > > > > Val > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of hesterfenwick > > > > > > > > > Maybe it is about how to find the discussions because searching thtough old > > > discussions is nigh-on impossible by thread title. But I never had any > > > response to my 'pros and cons' question beyond being told DASH and meds was > > > the way to go - despite pressing and pressing for the equivalent analysis on > > > surgery. And in the year since then I've seen very little support for > > > surgery. Now in my case (under 40, clear adenoma, BP controlled my minimal > > > meds, PA short term) it was a no-brainer according to all the other research > > > I could lay my hands on. > > > > > > When I got no response on here to surgery questions, I did trawl through Pub > > > Med and every other piece of research I could find - but it would have been > > > lovely to have been able to speed that up by getting some facts on here to > > > begin with. And I'm guessing that's what many others do - they come on here > > > as a first port of call but then move on to doing their own fundamental > > > research or go with their medical teams advice and never come back. > > > > > > It's great, fantastic, that so many of you are fervent supporters of DASH > > > and meds. Really - I absolutely mean that. But that doesn't mean there isn't > > > ever a case for surgery. Now I'll do my best to be equally fervent in > > > support of surgery when I think somebody has a case for it - that's why I'm > > > still here. Because that's how it's all going to work, imho. But I'm not a > > > medic and I won't be up to date with the latest research so I'll never carry > > > as much weight as many of you. So hopefully there will be others around > > > giving an alternative view-point too. And if that isn't welcome then there > > > should be something in the intro about this being a forum for supporting > > > Conn's sufferers through diet and meds rather than it being a general PA > > > support site. > > > > > > H > > > > > >

[Guest guest]

Not sure why you take exception to it? Every time I post at least 10 people

reply with their opinions - that is a whole lot, isn't it? It was nothing

personal against you - you've posted some great links to well researched

articles.

I'm still on the original thread about why people leave the site. Personally I

came here to get advice, didn't get balanced advice, sought it elsewhere and

decided to go for surgery (without AVS) and am 100% cured i.e. off all

medication. So I'm not still on here looking for advice, I'm on here to make

sure that there is another opinion on here - one that says 'surgery can be

straight forward and it can be a cure'. And to offer moral support to anybody

else who chooses that route and is otherwise liable to be targetted by many

others on here who tell them their decision is wrong.

H

> > >

> > > There has been some research posted about the failure of surgery many

years

> > > later. If you have one adenoma, you could very well develop another on

the

> > > other adrenal. That's why Dr. Grim recommends DASH, meds first and

surgery

> > > last. I don't want opinions; I want facts supported by research, or at

> > > least by expert opinion.

> > >

> > > Val

> > >

> > > From: hyperaldosteronism

> > > [mailto:hyperaldosteronism ] On Behalf Of hesterfenwick

> > >

> > >

> > > Maybe it is about how to find the discussions because searching thtough

old

> > > discussions is nigh-on impossible by thread title. But I never had any

> > > response to my 'pros and cons' question beyond being told DASH and meds

was

> > > the way to go - despite pressing and pressing for the equivalent analysis

on

> > > surgery. And in the year since then I've seen very little support for

> > > surgery. Now in my case (under 40, clear adenoma, BP controlled my minimal

> > > meds, PA short term) it was a no-brainer according to all the other

research

> > > I could lay my hands on.

> > >

> > > When I got no response on here to surgery questions, I did trawl through

Pub

> > > Med and every other piece of research I could find - but it would have

been

> > > lovely to have been able to speed that up by getting some facts on here to

> > > begin with. And I'm guessing that's what many others do - they come on

here

> > > as a first port of call but then move on to doing their own fundamental

> > > research or go with their medical teams advice and never come back.

> > >

> > > It's great, fantastic, that so many of you are fervent supporters of DASH

> > > and meds. Really - I absolutely mean that. But that doesn't mean there

isn't

> > > ever a case for surgery. Now I'll do my best to be equally fervent in

> > > support of surgery when I think somebody has a case for it - that's why

I'm

> > > still here. Because that's how it's all going to work, imho. But I'm not a

> > > medic and I won't be up to date with the latest research so I'll never

carry

> > > as much weight as many of you. So hopefully there will be others around

> > > giving an alternative view-point too. And if that isn't welcome then there

> > > should be something in the intro about this being a forum for supporting

> > > Conn's sufferers through diet and meds rather than it being a general PA

> > > support site.

> > >

> > > H

> > >

> >

>

[Guest guest]

I'm not sure why you sound so defensive about having surgery. It was your decision, if you are glad you had it done, then that's what matters. I don't think anyone here tried to talk you out of it or told you not to have surgery. If I remember right Dr. Grim always says he recommends surgery only if diet and spiro fail, recommend being the operative word. The choice is ultimately up to the individual as to have surgery or not. Each person need to do his own research and decide if a 50% or less chance of a cure is good enough odds for them. On the survey that members of this group responded to, 12 members responded who had an adrenalectomy done between 2001-2011. When

those 12 were asked, "Have any symptoms recurred?", 3 responded no, 2 did not respond, and 7 members responded yes. I believe it takes a few years before anyone can actually call themselves "cured" and there are many factors that influence whether a person will be cured. Personally I hope everyone who opts for surgery gets a cure but we know that ain't gonna happen, and that's not just my opinion.

Am J Hypertens. 2008 Jul;21(7):742-7. Epub 2008 Apr 24.

Urinary aldosterone-to-active-renin ratio: a useful tool for predicting resolution of hypertension after adrenalectomy in patients with aldosterone-producing adenomas.

Mourad JJ, Girerd X, Milliez P, -Sublet M, Lejeune S, Safar ME.

Source

Hypertension Unit, Avicenne Hospital, AP-HP, Paris XIII University (EA 3412), Paris, France.

Abstract

BACKGROUND:

The purpose of this study was to determine the preoperative clinical and biological factors that predict the clinical outcomes after surgery, in subjects with aldosterone-producing adenomas (APAs).

METHODS:

Fifty-eight patients (mean age 52 +/- 11 years) with APA were followed up for 43 +/- 13 months after they had undergone unilateral adrenalectomy. The subjects were classified as "cured" (n = 23) if the blood pressure (BP) was <140/90 mm Hg without postoperative medication, "normalized" (n = 20) if BP was <140/90 mm Hg with antihypertensive therapy, and "uncontrolled" (n = 15) if a BP of < or =140/90 mm Hg was not achieved despite intensive therapy.

RESULTS:

The cured patients had a significantly lower mean preoperative age, cardiac mass, and serum creatinine (P < 0.001) than the other subjects. The main independent predictors of surgical curability were: age (P < 0.01), low serum potassium (P < 0.0001), and the urinary aldosterone-to-active-renin (UAAR) ratio (P < 0.008). Among the hormonal parameters, the UAAR ratio provided the best area under the receiver operating-characteristics curve (0.802 (confidence interval (CI) 95%: 0.676-0.944)). For a cutoff value of 15, the positive and negative predictive values of the UAAR ratio were 85 and 92%, respectively. In the study population as a whole, surgical treatment restored the age-systolic BP (SBP) relationship (P < 0.006), which was insignificant before surgery.

CONCLUSIONS:

Although all the subjects showed lowering of BP after surgery, and the age-BP relationship was restored, the long-term cure rate of APA subjects was 40%. The UAAR ratio, by comparison with other classical hormonal features of primary aldosteronism, was the best independent predictor of the cure of hypertension after adrenalectomy.

To: hyperaldosteronism Sent: Tuesday, October 11, 2011 3:53 PMSubject: Re: Time to rethink how to move forward with this group. -HesterNot sure why you take exception to it? Every time I post at least 10 people reply with their opinions - that is a whole lot, isn't it? It was nothing personal against you - you've posted some great links to

well researched articles.I'm still on the original thread about why people leave the site. Personally I came here to get advice, didn't get balanced advice, sought it elsewhere and decided to go for surgery (without AVS) and am 100% cured i.e. off all medication. So I'm not still on here looking for advice, I'm on here to make sure that there is another opinion on here - one that says 'surgery can be straight forward and it can be a cure'. And to offer moral support to anybody else who chooses that route and is otherwise liable to be targetted by many others on here who tell them their decision is wrong.H> >> > Not sure there are many facts on this forum at all - just a whole lot of opinions. The facts I found on Pub Med gave a far more balanced opinion of meds vs. surgery. As did my own medical team - if they count as 'expert opinion'. That's why it's so frustrating to be bashed over the head with DASH/meds for as long as it works - actually that makes the prognosis of surgery, when it eventually happens, worse.> > > > I guess it all comes

down to whether you actually want any new members to join this forum or whether you're all happy to bounce your own opinions around and around. All I (and a couple of others) are saying is that it's not very helpful or welcoming to be told that the one and only way to progress is DASH/meds and if we don't do that we're stupid. Actually there is no research or facts (at least that has ever been quoted at me) to back up that opinion either. The only facts that are quoted are the possible failures of surgery. > > > > The original question (which in true fashion has got way out of control) was whether the group could move forward. I think this thread is true proof that no, it can't. Because there are far too many people coming up with reasons why it shouldn't - not that anybody is happy with the status quo, just that any other suggestions get shot down in fire immediately.> > >

[Guest guest]

I'm not the OP but I have to jump in and add my voice to those saying that this site does come across as having an anti-surgery bias. Yes, ultimately it is up to each of us to do our own research and decide what is best for us - which, apparently, Hester did, and I did as well.However - when I first started testing for PA and was new to all of this, I posted an inquiry here about the oral sodium loading test. I was scared out of my wits about doing this test, and Dr. Grim responded with a flippant reply that he jokingly called it the "berry aneurism tolerance test," went on to bash my medical provider's judgment of ordering the test in the first place, and ended with "Or you could DASH and do spiro and if BP goes down keep DASHing. "Now if that's not biased, I don't know what is. That was about the time that I almost left the group - which I thought was a "support" group, and that response was anything but supportive.But I'm pretty thick-skinned. I stuck around, stood up for myself, and am not planning on going anywhere.> > >> > > Not sure there are many facts on this forum at all - just a whole lot of opinions. The facts I found on Pub Med gave a far more balanced opinion of meds vs. surgery. As did my own medical team - if they count as 'expert opinion'. That's why it's so frustrating to be bashed over the head with DASH/meds for as long as it works - actually that makes the prognosis of surgery, when it eventually happens, worse.> > > > > > I guess it all comes down to whether you actually want any new members to join this forum or whether you're all happy to bounce your own opinions around and around. All I (and a couple of others) are saying is that it's not very helpful or welcoming to be told that the one and only way to progress is DASH/meds and if we don't do that we're stupid. Actually there is no research or facts (at least that has ever been quoted at me) to back up that opinion either. The only facts that are quoted are the possible failures of surgery. > > > > > > The original question (which in true fashion has got way out of control) was whether the group could move forward. I think this thread is true proof that no, it can't. Because there are far too many people coming up with reasons why it shouldn't - not that anybody is happy with the status quo, just that any other suggestions get shot down in fire immediately.> > > > >>

[Guest guest]

I don't feel defensive about having surgery at all but on this group I do feel

the need to defend my decision far more than I should. I didn't wait until diet

and spiro had failed - I felt that would be too late based on everything I'd

read and the advice I was getting from my own medical team - but I was

absolutely confident in my decision and the odds for me, in my situation, were

way, way better than 50/50.

But once again to come back to the original point of this thread:

I'm not trying to debate whether or not I should have had surgery - like

nmsmith keeps saying as well - that's a call we can all make. But the OP was

asking about how to move on with the group and one of the biggest issues

(apparently not obvious to many) is that the advice given IS heavily biased. If

you join the group with a diagnosis or potential diagnosis of PA and you want to

understand the possible treatment options, most respondents seem to think you'd

be crazy to consider surgery which makes people reluctant to even discuss the

possibility.

nmsmith and I are both apparently from the thick skinned variety which means

we're happy to ignore that opinion and go with our own. But many will just leave

the group straight away - possibly even before posting - the group therefore

misses that diversity, stories and follow-up on those who have taken the surgery

route successfully or not. So the forum becomes a support group for DASH and

meds - which I think is not what the original intention was nor what it 'says on

the tin'.

H

> > >

> > > Not sure there are many facts on this forum at all - just a whole lot of

opinions. The facts I found on Pub Med gave a far more balanced opinion of meds

vs. surgery. As did my own medical team - if they count as 'expert opinion'.

That's why it's so frustrating to be bashed over the head with DASH/meds for as

long as it works - actually that makes the prognosis of surgery, when it

eventually happens, worse.

> > >

> > > I guess it all comes down to whether you actually want any new members to

join this forum or whether you're all happy to bounce your own opinions around

and around. All I (and a couple of others) are saying is that it's not very

helpful or welcoming to be told that the one and only way to progress is

DASH/meds and if we don't do that we're stupid. Actually there is no research or

facts (at least that has ever been quoted at me) to back up that opinion either.

The only facts that are quoted are the possible failures of surgery.

> > >

> > > The original question (which in true fashion has got way out of control)

was whether the group could move forward. I think this thread is true proof that

no, it can't. Because there are far too many people coming up with reasons why

it shouldn't - not that anybody is happy with the status quo, just that any

other suggestions get shot down in fire immediately.

> > >

> >

>

[Guest guest]

After rereading your first paragraph, I think we are on the same page! I

probably should have started " I personally take... " Sorry.

I had quite a list of pros and cons when I was considering but they were unique

to my situation. One I remember was if I was still driving the tour bus I

probably would have opted for surgery. The detail: I was in a hotel 123 nights

the year before disability. I know that 90% of the trips are Students and

Athletes and the rest mostly tours (like the current fall foilage tours) Let me

decode this:123 days I would not be able to prepare for a " special " diet; 90% of

the times I would be stopping at fast food or Golden Corrals 98% of the time;

and finally the last 10% I would be eating at 4 or 5 star restaurants for 3

meals a day! That's a 5 and 6 course meal 3 times a day! One year I was on the

road 38 days straight (proud to say I only gained 18 lbs that year!) And you

thought driving a bus was easy, now you know why most good bus drivers are fat -

all meals are comped!

I think I've set the stage for one decision point for me personally but without

the explaination it is meaningless.

In your case, you provided an excellent summary BTW, the answer is easy. I'll

even proceed w/o a thumbnail on this one, I assume you are under 40 because you

" had your 3d child 2 years ago " ! Any standard of care I have seen say if there

is a visible tumor and you are under 40 you should go directly to surgery and

bypass the AVS. I have posted that flowchart atleast 3 times. (Not everyone

will agree with this but that is the majority opinion FROM MY RESEARCH. I don't

know if it is in our files but it has been offered!)

I just posted a summary 2 days ago where the concensus was if a tumor was found

and producing according to AVS remove in. In fact, Dr. Grim responded that was

biased toward surgery (IHO) and asked that it be retained in our files. He also

suggested he knew some of the doctors and had presented the value of considering

the diet first.

IMHO! If he has yet to convince " the world " that PA is NOT rare, how can he

convince them that DASH and Meds. should be the first course of action for

treatment of that rare disease? BTW, I saw a reference to the 40year cutoff and

it was indicated it was a $$$ issue but I don't know if the cost of AVS was

included and the detail since it was just a passing comment. (Also don't know

if it was US or Swiss money!)

Hester, I personally appreciate your opinions, comments and experience and

really encourage you to stay with us and keep us honest! It makes for a much

stronger group, IMHO!

- 65 yo super ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank

pain. Treating with Meds. And DASH. . Current BP(last week ave): 125/73

Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, and PTSD.

Meds: Duloxetine hcl 80 MG, Mirtazapine 7.5 MG, Metoprolol Tartrate 200 MG,

81mg asprin, Metformin 2000MG and Spironolactone 50 MG.

> > > >

> > > > There has been some research posted about the failure of surgery many

years

> > > > later. If you have one adenoma, you could very well develop another on

the

> > > > other adrenal. That's why Dr. Grim recommends DASH, meds first and

surgery

> > > > last. I don't want opinions; I want facts supported by research, or at

> > > > least by expert opinion.

> > > >

> > > > Val

> > > >

> > > > From: hyperaldosteronism

> > > > [mailto:hyperaldosteronism ] On Behalf Of hesterfenwick

> > > >

> > > >

> > > > Maybe it is about how to find the discussions because searching thtough

old

> > > > discussions is nigh-on impossible by thread title. But I never had any

> > > > response to my 'pros and cons' question beyond being told DASH and meds

was

> > > > the way to go - despite pressing and pressing for the equivalent

analysis on

> > > > surgery. And in the year since then I've seen very little support for

> > > > surgery. Now in my case (under 40, clear adenoma, BP controlled my

minimal

> > > > meds, PA short term) it was a no-brainer according to all the other

research

> > > > I could lay my hands on.

> > > >

> > > > When I got no response on here to surgery questions, I did trawl through

Pub

> > > > Med and every other piece of research I could find - but it would have

been

> > > > lovely to have been able to speed that up by getting some facts on here

to

> > > > begin with. And I'm guessing that's what many others do - they come on

here

> > > > as a first port of call but then move on to doing their own fundamental

> > > > research or go with their medical teams advice and never come back.

> > > >

> > > > It's great, fantastic, that so many of you are fervent supporters of

DASH

> > > > and meds. Really - I absolutely mean that. But that doesn't mean there

isn't

> > > > ever a case for surgery. Now I'll do my best to be equally fervent in

> > > > support of surgery when I think somebody has a case for it - that's why

I'm

> > > > still here. Because that's how it's all going to work, imho. But I'm not

a

> > > > medic and I won't be up to date with the latest research so I'll never

carry

> > > > as much weight as many of you. So hopefully there will be others around

> > > > giving an alternative view-point too. And if that isn't welcome then

there

> > > > should be something in the intro about this being a forum for supporting

> > > > Conn's sufferers through diet and meds rather than it being a general PA

> > > > support site.

> > > >

> > > > H

> > > >

> > >

> >

>

[Guest guest]

I believe I have always tried to show a point counter point as much as possible.

Sometimes hard to do as data isn't good enough to do it.

We had a bit of discussion on having AVS based on age. I belive the information

was enough for one to decide to have AVS or not. It does seen to be very little

information on long term cure rate after surgery. So if any one knows of a good

study than gives good informatin on cure rate we neek to know about it.

> > > > >

> > > > > There has been some research posted about the failure of surgery many

years

> > > > > later. If you have one adenoma, you could very well develop another

on the

> > > > > other adrenal. That's why Dr. Grim recommends DASH, meds first and

surgery

> > > > > last. I don't want opinions; I want facts supported by research, or

at

> > > > > least by expert opinion.

> > > > >

> > > > > Val

> > > > >

> > > > > From: hyperaldosteronism

> > > > > [mailto:hyperaldosteronism ] On Behalf Of hesterfenwick

> > > > >

> > > > >

> > > > > Maybe it is about how to find the discussions because searching

thtough old

> > > > > discussions is nigh-on impossible by thread title. But I never had any

> > > > > response to my 'pros and cons' question beyond being told DASH and

meds was

> > > > > the way to go - despite pressing and pressing for the equivalent

analysis on

> > > > > surgery. And in the year since then I've seen very little support for

> > > > > surgery. Now in my case (under 40, clear adenoma, BP controlled my

minimal

> > > > > meds, PA short term) it was a no-brainer according to all the other

research

> > > > > I could lay my hands on.

> > > > >

> > > > > When I got no response on here to surgery questions, I did trawl

through Pub

> > > > > Med and every other piece of research I could find - but it would have

been

> > > > > lovely to have been able to speed that up by getting some facts on

here to

> > > > > begin with. And I'm guessing that's what many others do - they come on

here

> > > > > as a first port of call but then move on to doing their own

fundamental

> > > > > research or go with their medical teams advice and never come back.

> > > > >

> > > > > It's great, fantastic, that so many of you are fervent supporters of

DASH

> > > > > and meds. Really - I absolutely mean that. But that doesn't mean there

isn't

> > > > > ever a case for surgery. Now I'll do my best to be equally fervent in

> > > > > support of surgery when I think somebody has a case for it - that's

why I'm

> > > > > still here. Because that's how it's all going to work, imho. But I'm

not a

> > > > > medic and I won't be up to date with the latest research so I'll never

carry

> > > > > as much weight as many of you. So hopefully there will be others

around

> > > > > giving an alternative view-point too. And if that isn't welcome then

there

> > > > > should be something in the intro about this being a forum for

supporting

> > > > > Conn's sufferers through diet and meds rather than it being a general

PA

> > > > > support site.

> > > > >

> > > > > H

> > > > >

> > > >

> > >

> >

>

[Guest guest]

There has been discussion about failed operations and MCBs failing and I want to

make a couple points.

First, I don't believe MCBs fail, I believe either we fail or see my second

point. Dr. Grim says " Show me the pee " (God I'd like to sometimes but that is

another story). I feel is it stops working the base (our body) has chabged.

(wt fluction, diet, activity, etc)

Second, and if you haven't reviewed the Stowasser, et al article you might want

to read at least pages 12 & 13. They recommend followup testing to answer the

Why question. I have not gone back and really studied it but ITHO they suggest

a follow on test for renin will answer alot of that question! (I'm waiting for

others to access that suggestion.) It made sense to me! One point they made

was if surgery correct HTN and HTN returns 5 - 10 yrs later, what's to say it is

PA? Maybe, just maybe there are other causes of HTN!

Wish I had read that article when I waited 10 months for Spiro to work! My PCP

will get her own personal copy on Monday (to have and to hold....)! ;>)

- 65 yo super ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank

pain. Treating with Meds. And DASH. . Current BP(last week ave): 125/73

Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, and PTSD.

Meds: Duloxetine hcl 80 MG, Mirtazapine 7.5 MG, Metoprolol Tartrate 200 MG,

81mg asprin, Metformin 2000MG and Spironolactone 50 MG.

> > > >

> > > > Not sure there are many facts on this forum at all - just a whole lot of

opinions. The facts I found on Pub Med gave a far more balanced opinion of meds

vs. surgery. As did my own medical team - if they count as 'expert opinion'.

That's why it's so frustrating to be bashed over the head with DASH/meds for as

long as it works - actually that makes the prognosis of surgery, when it

eventually happens, worse.

> > > >

> > > > I guess it all comes down to whether you actually want any new members

to join this forum or whether you're all happy to bounce your own opinions

around and around. All I (and a couple of others) are saying is that it's not

very helpful or welcoming to be told that the one and only way to progress is

DASH/meds and if we don't do that we're stupid. Actually there is no research or

facts (at least that has ever been quoted at me) to back up that opinion either.

The only facts that are quoted are the possible failures of surgery.

> > > >

> > > > The original question (which in true fashion has got way out of control)

was whether the group could move forward. I think this thread is true proof that

no, it can't. Because there are far too many people coming up with reasons why

it shouldn't - not that anybody is happy with the status quo, just that any

other suggestions get shot down in fire immediately.

> > > >

> > >

> >

>