Re: AVS now recommended for me based on Spiro trial

[Guest guest]

I saw the 1% statistic on AVS. However, I am unable to find any reliable

studies showing a 1% death rate from Adrenal Vein Sampling. In fact, I am

finding it hard to find even one death reported in a normal individual. I guess

if someone is elderly, has a pheo, or an unknown heart condition, AVS might be a

1% risk.

Is there actual data out there showing a 1% death rate from Adrenal Vein

Sampling? The stats at Mayo show only a 2.5% complication rate. I didn't see

any actual deaths reported.

>

> I was offered the AVS option to see which of my Adrenals was misbehaving. I

read about AVS and if my memory serves me correct there is a 1% chance of biting

the dust from a bloodclot in the lung and potential damage to the adrenal (maybe

even the good one) from the AVS itself. I never checked to see the odds of the

actual surgury. I chose to go the med route until it no longer works, especially

when the diagnosis was such a clustered process in the first place. I am not

overly confident in the medical community. Look at all the twisted info on just

what is the best diet alone. Atkins and The Eades would say DASH is BS. Complete

opposite of what we are learning here. One has to follow the science I guess,

but even that seems tilted in many ways to serve various marketing schemes.

I am leaning toward trusting Dr. Grim's advice as he hasnt shown any method of

trying to profit from his recommendation. Genuinely seems to be trying to helps

us here becuase

> the medical community isnt. Medical community also seems to be in bed with

the big Pharmas to the point where i dont really trust them. Always pushing

pills, pills, pills. It is a tough choice being in your 30's. I am only 45, so

i have asked the same question " Can I really live on these meds for another 40+

years without them screwing up something else? "

>

> ============================================================================

> 45-Male-Caucasian, 5'9 " - 230lbs, PA Diagnosed 2007 Suspected Hyperplasia-No

tumors on CT - No AVS.

> Meds: 50mg Spiro, 25mg HCTZ, 40meg Potassium, 2400mg Calcium, 1000mg

Magnesium, 100,000UI Vit D (weekly), 40mg Omeprazole

> Side effects: Gynecomastia, stomach inflammation

> Other Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary

Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head

and Pelvis. Fibromyalgia

> DASH: Not at this time, but cutting back on excess salt. No more bacon

everyday. Using Mrs Dash instead of salt when ever possible.

>

>

> >To: hyperaldosteronism

> >Sent: Friday, April 22, 2011 2:12 PM

> >Subject: Re: AVS now recommended for me based on Spiro

trial

> >

> >

> > 

> >I posted here earlier in the week about my response to Spiro. 25mg is working

very well. In fact, I am now completely off potassium and all other blood

pressure meds. I am exercising and feeling 10 years younger. My blood pressure

has measured under 120/80.

> >

> >My Endocrinologist e-mailed me that he now considers me a good candidate for

surgery due to my response to Spiro. In his opinion, excellent response to

Spiro, age, and length of time with HTN all help determine likelihood of

surgical cure. My CT shows a little lumpiness in the left adrenal gland. He

would like me to undergo an Adrenal Vein Sampling if I am willing to have the

surgery done. At first he recommended that I treat with meds only and not do the

AVS or pursue surgery. The response to Spiro and his hospital's radiologist

rechecking my CT (and finding the lumpiness on one adrenal) has prompted him to

now have me consider surgery.

> >

> >Dr. Grim, you have mentioned that one should always try the medication and

DASHing approach until it no longer works. That was the path I had settled on,

but I want to consider what the Endocrinologist is telling me.

> >

> >Two questions:

> >

> >In your experience, have you found the same to be true regarding probability

of surgical success related to response to Spiro, age, and history of HTN before

surgery?

> >

> >If I wait to have surgery, does waiting cause the probability of cure to go

down? Is there any disadvantage to waiting to have surgery until the medication

no longer works? My Endocrinologist acknowledges the risk of surgery, but tells

me there is still a lot that needs to be researched regarding the long term

treatment of PA. He told me that if he was in my situation he would pursue AVS

and surgery if an option. He also told me that treating medically would be a

perfectly good alternative since 25mg of Spiro is such a low dose, I exercise

and eat right, and should be able to cooperate with treatment.

> >

> >If waiting for surgery really does not impact the final outcome of surgery

(if needed later on down the line), it would seem that waiting is the absolute

best option. Does anyone have any thoughts on this? Does anyone regret the

decision to have surgery?

> >

> >Thanks,

> >

> >

> >34m. Spiro 25mg. Diagnosed 04/2011.

> >

> >

> >

> >

> >

>

[Guest guest]

I dont recall where I saw it, it has been over 3 years now and I haven't given it much thought. I might have translated in my own mind a stat of "complications" meaning a blood clot in lung equal to death. Disregard, I probably should have not said that without providing a link to where i read it.

============================================================================45-Male-Caucasian, 5'9"- 230lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 50mg Spiro, 25mg HCTZ, 40meg Potassium, 2400mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 40mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Fibromyalgia

DASH: Not at this time, but cutting back on excess salt. No more bacon everyday. Using Mrs Dash instead of salt when ever possible.

To: hyperaldosteronism Sent: Friday, April 22, 2011 4:13 PMSubject: Re: Re: AVS now recommended for me based on Spiro trial

I saw the 1% statistic on AVS. However, I am unable to find any reliable studies showing a 1% death rate from Adrenal Vein Sampling. In fact, I am finding it hard to find even one death reported in a normal individual. I guess if someone is elderly, has a pheo, or an unknown heart condition, AVS might be a 1% risk. Is there actual data out there showing a 1% death rate from Adrenal Vein Sampling? The stats at Mayo show only a 2.5% complication rate. I didn't see any actual deaths reported.>> I was offered the AVS option to see which of my Adrenals was misbehaving. I read about AVS and if my memory serves me correct there is a 1% chance of biting the dust from a bloodclot in the lung and

potential damage to the adrenal (maybe even the good one) from the AVS itself. I never checked to see the odds of the actual surgury. I chose to go the med route until it no longer works, especially when the diagnosis was such a clustered process in the first place. I am not overly confident in the medical community. Look at all the twisted info on just what is the best diet alone. Atkins and The Eades would say DASH is BS. Complete opposite of what we are learning here. One has to follow the science I guess, but even that seems tilted in many ways to serve various marketing schemes. I am leaning toward trusting Dr. Grim's advice as he hasnt shown any method of trying to profit from his recommendation. Genuinely seems to be trying to helps us here becuase> the medical community isnt. Medical community also seems to be in bed with the big Pharmas to the point where i dont really trust them. Always pushing pills, pills,

pills. It is a tough choice being in your 30's. I am only 45, so i have asked the same question " Can I really live on these meds for another 40+ years without them screwing up something else?" > > ============================================================================> 45-Male-Caucasian, 5'9"- 230lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.> Meds: 50mg Spiro, 25mg HCTZ, 40meg Potassium, 2400mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 40mg Omeprazole> Side effects: Gynecomastia, stomach inflammation> Other Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Fibromyalgia> DASH: Not at this time, but cutting back on excess salt. No more bacon everyday. Using Mrs Dash instead of salt when ever possible. > > From: crzylnebkr

> >To: hyperaldosteronism > >Sent: Friday, April 22, 2011 2:12 PM> >Subject: Re: AVS now recommended for me based on Spiro trial> >> >> >Â > >I posted here earlier in the week about my response to Spiro. 25mg is working very well. In fact, I am now completely off potassium and all other blood pressure meds. I am exercising and feeling 10 years younger. My blood pressure has measured under 120/80.> >> >My Endocrinologist e-mailed me that he now considers me a good candidate for surgery due to my response to Spiro. In his opinion, excellent response to Spiro, age, and length of time with HTN all help determine likelihood of surgical cure. My CT shows a little lumpiness in

the left adrenal gland. He would like me to undergo an Adrenal Vein Sampling if I am willing to have the surgery done. At first he recommended that I treat with meds only and not do the AVS or pursue surgery. The response to Spiro and his hospital's radiologist rechecking my CT (and finding the lumpiness on one adrenal) has prompted him to now have me consider surgery.> >> >Dr. Grim, you have mentioned that one should always try the medication and DASHing approach until it no longer works. That was the path I had settled on, but I want to consider what the Endocrinologist is telling me. > >> >Two questions:> >> >In your experience, have you found the same to be true regarding probability of surgical success related to response to Spiro, age, and history of HTN before surgery? > >> >If I wait to have surgery, does waiting cause the probability of cure to go down? Is there any

disadvantage to waiting to have surgery until the medication no longer works? My Endocrinologist acknowledges the risk of surgery, but tells me there is still a lot that needs to be researched regarding the long term treatment of PA. He told me that if he was in my situation he would pursue AVS and surgery if an option. He also told me that treating medically would be a perfectly good alternative since 25mg of Spiro is such a low dose, I exercise and eat right, and should be able to cooperate with treatment.> >> >If waiting for surgery really does not impact the final outcome of surgery (if needed later on down the line), it would seem that waiting is the absolute best option. Does anyone have any thoughts on this? Does anyone regret the decision to have surgery?> >> >Thanks,> >> >> >34m. Spiro 25mg. Diagnosed 04/2011.> >> >> >> >>

>>

[Guest guest]

Mayo record is 1% death rate reported at 2.5% of the times (=

%complications) which 1/.025=40% death overall!!!

|

|I saw the 1% statistic on AVS. However, I am unable to find

|any reliable studies showing a 1% death rate from Adrenal Vein

|Sampling. In fact, I am finding it hard to find even one

|death reported in a normal individual. I guess if someone is

|elderly, has a pheo, or an unknown heart condition, AVS might

|be a 1% risk.

|

|Is there actual data out there showing a 1% death rate from

|Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

|complication rate. I didn't see any actual deaths reported.

|

|

|

|

[Guest guest]

Where are you getting those statistics? 40% overall death rate?? That is not

right.

2.5% X 1% = .0025 * .001 = 0.025%

Easy example

100 people

2.5 complications per 100 people

If only 1% of the complications die, that would be 1% of 2.5 people. Not even

close to 40 people.

I can't find where the death rate is 1% for AVS at Mayo. I don't even think the

death rate is 1% for Adrenal surgery.

I'm not saying you are wrong, but your math and info doesn't seem right.

>

> Mayo record is 1% death rate reported at 2.5% of the times (=

> %complications) which 1/.025=40% death overall!!!

>

> |

> |I saw the 1% statistic on AVS. However, I am unable to find

> |any reliable studies showing a 1% death rate from Adrenal Vein

> |Sampling. In fact, I am finding it hard to find even one

> |death reported in a normal individual. I guess if someone is

> |elderly, has a pheo, or an unknown heart condition, AVS might

> |be a 1% risk.

> |

> |Is there actual data out there showing a 1% death rate from

> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> |complication rate. I didn't see any actual deaths reported.

> |

> |

> |

> |

>

[Guest guest]

Thanks for questioning that, , I'm very mathematically-challenged but that

was my conclusion too - 40% death rate?!

My AVS is scheduled for next week. FWIW, my IR has done " dozens " of them over

the years, and the only complication she's encountered is inabiity to access the

right adrenal.

- msmith1928

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

28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused

gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg,

norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose-

and grain-free diet

> >

> > Mayo record is 1% death rate reported at 2.5% of the times (=

> > %complications) which 1/.025=40% death overall!!!

> >

> > |

> > |I saw the 1% statistic on AVS. However, I am unable to find

> > |any reliable studies showing a 1% death rate from Adrenal Vein

> > |Sampling. In fact, I am finding it hard to find even one

> > |death reported in a normal individual. I guess if someone is

> > |elderly, has a pheo, or an unknown heart condition, AVS might

> > |be a 1% risk.

> > |

> > |Is there actual data out there showing a 1% death rate from

> > |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> > |complication rate. I didn't see any actual deaths reported.

> > |

> > |

> > |

> > |

> >

>

[Guest guest]

Is that a death rate FROM the actual AVS or a death in a surgery or procedure? All procedures have a risk. 1% though is well within chance on any given study so odds are someone could have a bad outcome no matter what they may have been doing. Out of 100 people having that done I guess we could figure 1 of them was very sick already.Subject: RE: Re: AVS now recommended for me based on Spiro trialTo: hyperaldosteronism Date: Friday, April 22, 2011, 4:30 PM

Mayo record is 1% death rate reported at 2.5% of the times (=

%complications) which 1/.025=40% death overall!!!

|

|I saw the 1% statistic on AVS. However, I am unable to find

|any reliable studies showing a 1% death rate from Adrenal Vein

|Sampling. In fact, I am finding it hard to find even one

|death reported in a normal individual. I guess if someone is

|elderly, has a pheo, or an unknown heart condition, AVS might

|be a 1% risk.

|

|Is there actual data out there showing a 1% death rate from

|Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

|complication rate. I didn't see any actual deaths reported.

|

|

|

|

[Guest guest]

So that is like 1 out of 400 who have the proceedure would die statistically?

2.5% comp = 1 out of 40. then 1% of those died= 1 out of 400.

============================================================================45-Male-Caucasian, 5'9"- 230lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 50mg Spiro, 25mg HCTZ, 40meg Potassium, 2400mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 40mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Fibromyalgia

DASH: Not at this time, but cutting back on excess salt. No more bacon everyday. Using Mrs Dash instead of salt when ever possible.

To: hyperaldosteronism Sent: Friday, April 22, 2011 4:37 PMSubject: Re: Re: AVS now recommended for me based on Spiro trial

Where are you getting those statistics? 40% overall death rate?? That is not right.2.5% X 1% = .0025 * .001 = 0.025%Easy example100 people 2.5 complications per 100 peopleIf only 1% of the complications die, that would be 1% of 2.5 people. Not even close to 40 people.I can't find where the death rate is 1% for AVS at Mayo. I don't even think the death rate is 1% for Adrenal surgery.I'm not saying you are wrong, but your math and info doesn't seem right.>> Mayo record is 1% death rate reported at 2.5% of the times (=> %complications) which 1/.025=40% death overall!!!> > |> |I saw the 1% statistic on AVS.

However, I am unable to find > |any reliable studies showing a 1% death rate from Adrenal Vein > |Sampling. In fact, I am finding it hard to find even one > |death reported in a normal individual. I guess if someone is > |elderly, has a pheo, or an unknown heart condition, AVS might > |be a 1% risk. > |> |Is there actual data out there showing a 1% death rate from > |Adrenal Vein Sampling? The stats at Mayo show only a 2.5% > |complication rate. I didn't see any actual deaths reported.> |> |> |> |>

[Guest guest]

1% of 400 would be 0.25 people died. Maybe they just counted their kidneys and adrenals to get to 1/4 of the body . So only part of them died. Like my brain - but that is only 1/100th for me. Subject: Re: Re: AVS now recommended for me based on Spiro trialTo: "hyperaldosteronism " <hyperaldosteronism >Date: Friday, April 22, 2011, 4:46 PM

So that is like 1 out of 400 who have the proceedure would die statistically?

2.5% comp = 1 out of 40. then 1% of those died= 1 out of 400.

============================================================================45-Male-Caucasian, 5'9"- 230lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 50mg Spiro, 25mg HCTZ, 40meg Potassium, 2400mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 40mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Fibromyalgia

DASH: Not at this time, but cutting back on excess salt. No more bacon everyday. Using Mrs Dash instead of salt when ever possible.

To: hyperaldosteronism Sent: Friday, April 22, 2011 4:37 PMSubject: Re: Re: AVS now recommended for me based on Spiro trial

Where are you getting those statistics? 40% overall death rate?? That is not right.2.5% X 1% = .0025 * .001 = 0.025%Easy example100 people 2.5 complications per 100 peopleIf only 1% of the complications die, that would be 1% of 2.5 people. Not even close to 40 people.I can't find where the death rate is 1% for AVS at Mayo. I don't even think the death rate is 1% for Adrenal surgery.I'm not saying you are wrong, but your math and info doesn't seem right.>> Mayo record is 1% death rate reported at 2.5% of the times (=> %complications) which 1/.025=40% death overall!!!> > |> |I saw the 1% statistic on

AVS.

However, I am unable to find > |any reliable studies showing a 1% death rate from Adrenal Vein > |Sampling. In fact, I am finding it hard to find even one > |death reported in a normal individual. I guess if someone is > |elderly, has a pheo, or an unknown heart condition, AVS might > |be a 1% risk. > |> |Is there actual data out there showing a 1% death rate from > |Adrenal Vein Sampling? The stats at Mayo show only a 2.5% > |complication rate. I didn't see any actual deaths reported.> |> |> |> |>

[Guest guest]

Searching uptodate.com, I found one study with 800 participants that had 1

adrenal hemorage. The result was emergency surgery. The patient survived.

Studycircle, where are you getting a 1% rate from? Maybe it is 1% of the

complications result in death. That would mean with a 2.5% complication rate,

that 100 people out of 4000 would have complications. One of them would die if

1% death out of the 2.5%. That would mean 1 death per 4000. A more reasonable

rate, but I still question the 1% figure as I can't find it anywhere in print.

I don't think it is as high as 1% on AVS. If 1 out of 100 patients die, I would

think lawsuits would prevent almost every hospital from offering the procedure.

>

>

> Subject: RE: Re: AVS now recommended for me based on

Spiro trial

> To: hyperaldosteronism

> Date: Friday, April 22, 2011, 4:30 PM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Mayo record is 1% death rate reported at 2.5% of the times (=

>

> %complications) which 1/.025=40% death overall!!!

>

>

>

> |

>

> |I saw the 1% statistic on AVS. However, I am unable to find

>

> |any reliable studies showing a 1% death rate from Adrenal Vein

>

> |Sampling. In fact, I am finding it hard to find even one

>

> |death reported in a normal individual. I guess if someone is

>

> |elderly, has a pheo, or an unknown heart condition, AVS might

>

> |be a 1% risk.

>

> |

>

> |Is there actual data out there showing a 1% death rate from

>

> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

>

> |complication rate. I didn't see any actual deaths reported.

>

> |

>

> |

>

> |

>

> |

>

[Guest guest]

right - 1 in 4000, not 1 in 400. See it is the stupid lowcarb diet making my brain misfire! I must DASH to restore my brain. Or...maybe i just suck at math. I better stick to music.lol

============================================================================45-Male-Caucasian, 5'9"- 230lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 50mg Spiro, 25mg HCTZ, 40meg Potassium, 2400mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 40mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Fibromyalgia

DASH: Not at this time, but cutting back on excess salt. No more bacon everyday. Using Mrs Dash instead of salt when ever possible.

To: hyperaldosteronism Sent: Friday, April 22, 2011 5:00 PMSubject: Re: AVS now recommended for me based on Spiro trial

Searching uptodate.com, I found one study with 800 participants that had 1 adrenal hemorage. The result was emergency surgery. The patient survived. Studycircle, where are you getting a 1% rate from? Maybe it is 1% of the complications result in death. That would mean with a 2.5% complication rate, that 100 people out of 4000 would have complications. One of them would die if 1% death out of the 2.5%. That would mean 1 death per 4000. A more reasonable rate, but I still question the 1% figure as I can't find it anywhere in print.I don't think it is as high as 1% on AVS. If 1 out of 100 patients die, I would think lawsuits would prevent almost every hospital from offering the procedure. > > > Subject: RE: Re: AVS now recommended for me based on Spiro trial> To: hyperaldosteronism > Date: Friday, April 22, 2011, 4:30 PM> > > > > > > > Â > > >

> > > > > > > Mayo record is 1% death rate reported at 2.5% of the times (=> > %complications) which 1/.025=40% death overall!!!> > > > |> > |I saw the 1% statistic on AVS. However, I am unable to find > > |any reliable studies showing a 1% death rate from Adrenal Vein > > |Sampling. In fact, I am finding it hard to find even one > > |death reported in a normal individual. I guess if someone is > > |elderly, has a pheo, or an unknown heart condition, AVS might > > |be a 1% risk. > > |> > |Is there actual data out there showing a 1% death rate from > > |Adrenal Vein Sampling? The stats at Mayo show only a 2.5% > > |complication rate. I didn't see any actual deaths reported.> > |> > |>

> |> > |>

[Guest guest]

Not quite. 2.5% would be 2.5 out of 100. Or 100 people out of 4000. If 1% of

those die, it would equal 1 out of 100. So 1 out of 4000 people.

2.5% = 2.5 people out of 100

1% of the 2.5% = 2.5 * .01 = .025 people out of 100. So 1 person out of 4000.

Keep in mind this is only if 1% of the complications actually die. I don't

think this is the case and would like to see actual research. If it is the

case, I personally don't like the odds even if it is 1 out of 4,000.

> >>

> >> Mayo record is 1% death rate reported at 2.5% of the times (=

> >> %complications) which 1/.025=40% death overall!!!

> >>

> >> |

> >> |I saw the 1% statistic on AVS. However, I am unable to find

> >> |any reliable studies showing a 1% death rate from Adrenal Vein

> >> |Sampling. In fact, I am finding it hard to find even one

> >> |death reported in a normal individual. I guess if someone is

> >> |elderly, has a pheo, or an unknown heart condition, AVS might

> >> |be a 1% risk.

> >> |

> >> |Is there actual data out there showing a 1% death rate from

> >> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> >> |complication rate. I didn't see any actual deaths reported.

> >> |

> >> |

> >> |

> >> |

> >>

> >

> >

> >

> >

> >

>

[Guest guest]

If you have also lowered your salt intake then be sure to tell your team as well as many drs do not know of the importance of loweringN Na intake and increasing K intAke is a key component to teTreating PA. no data on delaying surgery on rate of cure. Spiro response helps confirm dx of one of the many forms of PA BUT does not predict cure or type of disease. If you have uniateral disease and they take out the correct side then the Spiro response predicts good response. You should ask your ENDO how many PAs he has sent to surgery and followed for 5 years who no longer require any BP meds. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I posted here earlier in the week about my response to Spiro. 25mg is working very well. In fact, I am now completely off potassium and all other blood pressure meds. I am exercising and feeling 10 years younger. My blood pressure has measured under 120/80.

My Endocrinologist e-mailed me that he now considers me a good candidate for surgery due to my response to Spiro. In his opinion, excellent response to Spiro, age, and length of time with HTN all help determine likelihood of surgical cure. My CT shows a little lumpiness in the left adrenal gland. He would like me to undergo an Adrenal Vein Sampling if I am willing to have the surgery done. At first he recommended that I treat with meds only and not do the AVS or pursue surgery. The response to Spiro and his hospital's radiologist rechecking my CT (and finding the lumpiness on one adrenal) has prompted him to now have me consider surgery.

Dr. Grim, you have mentioned that one should always try the medication and DASHing approach until it no longer works. That was the path I had settled on, but I want to consider what the Endocrinologist is telling me.

Two questions:

In your experience, have you found the same to be true regarding probability of surgical success related to response to Spiro, age, and history of HTN before surgery?

If I wait to have surgery, does waiting cause the probability of cure to go down? Is there any disadvantage to waiting to have surgery until the medication no longer works? My Endocrinologist acknowledges the risk of surgery, but tells me there is still a lot that needs to be researched regarding the long term treatment of PA. He told me that if he was in my situation he would pursue AVS and surgery if an option. He also told me that treating medically would be a perfectly good alternative since 25mg of Spiro is such a low dose, I exercise and eat right, and should be able to cooperate with treatment.

If waiting for surgery really does not impact the final outcome of surgery (if needed later on down the line), it would seem that waiting is the absolute best option. Does anyone have any thoughts on this? Does anyone regret the decision to have surgery?

Thanks,

34m. Spiro 25mg. Diagnosed 04/2011.

[Guest guest]

Damn! I forgot math again...missed all math classes!

|

|

|Where are you getting those statistics? 40% overall death

|rate?? That is not right.

|

|2.5% X 1% = .0025 * .001 = 0.025%

|

|Easy example

|

|100 people

|

|2.5 complications per 100 people

|

|If only 1% of the complications die, that would be 1% of 2.5

|people. Not even close to 40 people.

|

|I can't find where the death rate is 1% for AVS at Mayo. I

|don't even think the death rate is 1% for Adrenal surgery.

|

|

|I'm not saying you are wrong, but your math and info doesn't

|seem right.

|

|

|

|

|

|>

|> Mayo record is 1% death rate reported at 2.5% of the times (=

|> %complications) which 1/.025=40% death overall!!!

|>

|> |

|> |I saw the 1% statistic on AVS. However, I am unable to find

|> |any reliable studies showing a 1% death rate from Adrenal Vein

|> |Sampling. In fact, I am finding it hard to find even one

|> |death reported in a normal individual. I guess if someone is

|> |elderly, has a pheo, or an unknown heart condition, AVS might

|> |be a 1% risk.

|> |

|> |Is there actual data out there showing a 1% death rate from

|> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

|> |complication rate. I didn't see any actual deaths reported.

|> |

|> |

|> |

|> |

|>

|

[Guest guest]

I hope you are Asking can I live on meds and Dashing. You cAn out salt all Bp MEDS. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I was offered the AVS option to see which of my Adrenals was misbehaving. I read about AVS and if my memory serves me correct there is a 1% chance of biting the dust from a bloodclot in the lung and potential damage to the adrenal (maybe even the good one) from the AVS itself. I never checked to see the odds of the actual surgury. I chose to go the med route until it no longer works, especially when the diagnosis was such a clustered process in the first place. I am not overly confident in the medical community. Look at all the twisted info on just what is the best diet alone. Atkins and The Eades would say DASH is BS. Complete opposite of what we are learning here. One has to follow the science I guess, but even that seems tilted in many ways to serve various marketing schemes.

I am leaning toward trusting Dr. Grim's advice as he hasnt shown any method of trying to profit from his recommendation. Genuinely seems to be trying to helps us here becuase the medical community isnt. Medical community also seems to be in bed with the big Pharmas to the point where i dont really trust them. Always pushing pills, pills, pills. It is a tough choice being in your 30's. I am only 45, so i have asked the same question " Can I really live on these meds for another 40+ years without them screwing up something else?"

============================================================================45-Male-Caucasian, 5'9"- 230lbs, PA Diagnosed 2007 Suspected Hyperplasia-No tumors on CT - No AVS.Meds: 50mg Spiro, 25mg HCTZ, 40meg Potassium, 2400mg Calcium, 1000mg Magnesium, 100,000UI Vit D (weekly), 40mg OmeprazoleSide effects: Gynecomastia, stomach inflammationOther Diags: GERD, Hiatal Hernia, Metabolic Syndrome - PreDiabetic, Secondary Hyperparathyroidism caused by Renal calcium leak, Bone Cyct in left Femoral Head and Pelvis. Fibromyalgia

DASH: Not at this time, but cutting back on excess salt. No more bacon everyday. Using Mrs Dash instead of salt when ever possible.

To: hyperaldosteronism Sent: Friday, April 22, 2011 2:12 PMSubject: Re: AVS now recommended for me based on Spiro trial

I posted here earlier in the week about my response to Spiro. 25mg is working very well. In fact, I am now completely off potassium and all other blood pressure meds. I am exercising and feeling 10 years younger. My blood pressure has measured under 120/80.My Endocrinologist e-mailed me that he now considers me a good candidate for surgery due to my response to Spiro. In his opinion, excellent response to Spiro, age, and length of time with HTN all help determine likelihood of surgical cure. My CT shows a little lumpiness in the left adrenal gland. He would like me to undergo an Adrenal Vein Sampling if I am willing to have the surgery done. At first he recommended that I treat with meds only and not do the AVS or pursue surgery. The response to Spiro and his hospital's radiologist rechecking my CT (and finding the lumpiness on one adrenal) has prompted him to now have me consider surgery.Dr. Grim, you have mentioned that one should

always try the medication and DASHing approach until it no longer works. That was the path I had settled on, but I want to consider what the Endocrinologist is telling me. Two questions:In your experience, have you found the same to be true regarding probability of surgical success related to response to Spiro, age, and history of HTN before surgery? If I wait to have surgery, does waiting cause the probability of cure to go down? Is there any disadvantage to waiting to have surgery until the medication no longer works? My Endocrinologist acknowledges the risk of surgery, but tells me there is still a lot that needs to be researched regarding the long term treatment of PA. He told me that if he was in my situation he would pursue AVS and surgery if an option. He also told me that treating medically would be a perfectly good alternative since 25mg of Spiro is such a low dose, I exercise and eat right, and should be able to

cooperate with treatment.If waiting for surgery really does not impact the final outcome of surgery (if needed later on down the line), it would seem that waiting is the absolute best option. Does anyone have any thoughts on this? Does anyone regret the decision to have surgery?Thanks,34m. Spiro 25mg. Diagnosed 04/2011.

[Guest guest]

Music is much cooler than Math. Funny you say that though because I started

Spiro 2 weeks ago and my mental cloud has lifted. I can calculate in my head

again and my chess ranking is slowly but surely climbing! Aldo is a bad mamma

jamma!!

> >>

> >> From: StudyCircle <studycircle@>

> >> Subject: RE: Re: AVS now recommended for me based on

Spiro trial

> >> To: hyperaldosteronism

> >> Date: Friday, April 22, 2011, 4:30 PM

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>  

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Mayo record is 1% death rate reported at 2.5% of the times (=

> >>

> >> %complications) which 1/.025=40% death overall!!!

> >>

> >>

> >>

> >> |

> >>

> >> |I saw the 1% statistic on AVS. However, I am unable to find

> >>

> >> |any reliable studies showing a 1% death rate from Adrenal Vein

> >>

> >> |Sampling. In fact, I am finding it hard to find even one

> >>

> >> |death reported in a normal individual. I guess if someone is

> >>

> >> |elderly, has a pheo, or an unknown heart condition, AVS might

> >>

> >> |be a 1% risk.

> >>

> >> |

> >>

> >> |Is there actual data out there showing a 1% death rate from

> >>

> >> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> >>

> >> |complication rate. I didn't see any actual deaths reported.

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >

> >

> >

> >

> >

>

[Guest guest]

No Aldo and high salt. No high salt with excess Aldo no problems. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Music is much cooler than Math. Funny you say that though because I started Spiro 2 weeks ago and my mental cloud has lifted. I can calculate in my head again and my chess ranking is slowly but surely climbing! Aldo is a bad mamma jamma!!

> >>

> >> From: StudyCircle <studycircle@>

> >> Subject: RE: Re: AVS now recommended for me based on Spiro trial

> >> To: hyperaldosteronism

> >> Date: Friday, April 22, 2011, 4:30 PM

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> ÂÂ

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Mayo record is 1% death rate reported at 2.5% of the times (=

> >>

> >> %complications) which 1/.025=40% death overall!!!

> >>

> >>

> >>

> >> |

> >>

> >> |I saw the 1% statistic on AVS. However, I am unable to find

> >>

> >> |any reliable studies showing a 1% death rate from Adrenal Vein

> >>

> >> |Sampling. In fact, I am finding it hard to find even one

> >>

> >> |death reported in a normal individual. I guess if someone is

> >>

> >> |elderly, has a pheo, or an unknown heart condition, AVS might

> >>

> >> |be a 1% risk.

> >>

> >> |

> >>

> >> |Is there actual data out there showing a 1% death rate from

> >>

> >> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> >>

> >> |complication rate. I didn't see any actual deaths reported.

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >

> >

> >

> >

> >

>

[Guest guest]

Be certain they give u ACTH. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Thanks for questioning that, , I'm very mathematically-challenged but that was my conclusion too - 40% death rate?!

My AVS is scheduled for next week. FWIW, my IR has done "dozens" of them over the years, and the only complication she's encountered is inabiity to access the right adrenal.

- msmith1928

45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet

> >

> > Mayo record is 1% death rate reported at 2.5% of the times (=

> > %complications) which 1/.025=40% death overall!!!

> >

> > |

> > |I saw the 1% statistic on AVS. However, I am unable to find

> > |any reliable studies showing a 1% death rate from Adrenal Vein

> > |Sampling. In fact, I am finding it hard to find even one

> > |death reported in a normal individual. I guess if someone is

> > |elderly, has a pheo, or an unknown heart condition, AVS might

> > |be a 1% risk.

> > |

> > |Is there actual data out there showing a 1% death rate from

> > |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> > |complication rate. I didn't see any actual deaths reported.

> > |

> > |

> > |

> > |

> >

>

[Guest guest]

I'm finding articles regarding the death rate from adrenal surgery. In a study

of 1577 patients the death rate was 0.3% for adrenal SURGERY. I couldn't find

any deaths related directly to adrenal vein sampling.

At a rate of .3%, this is 3,000 people out of a million people would die from

the surgery. This is for all people going through the surgery, not just PA

cases. I imagine if you have cancer, severe heart disease, are elderly, or

morbidly obese your odds might be different.

I am hoping a doctor who monitors this groups can help us to understand the

actual risks of both Adrenal Vein Sampling and Surgery.

How risky is it?

> >>

> >> From: StudyCircle <studycircle@>

> >> Subject: RE: Re: AVS now recommended for me based on

Spiro trial

> >> To: hyperaldosteronism

> >> Date: Friday, April 22, 2011, 4:30 PM

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>  

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Mayo record is 1% death rate reported at 2.5% of the times (=

> >>

> >> %complications) which 1/.025=40% death overall!!!

> >>

> >>

> >>

> >> |

> >>

> >> |I saw the 1% statistic on AVS. However, I am unable to find

> >>

> >> |any reliable studies showing a 1% death rate from Adrenal Vein

> >>

> >> |Sampling. In fact, I am finding it hard to find even one

> >>

> >> |death reported in a normal individual. I guess if someone is

> >>

> >> |elderly, has a pheo, or an unknown heart condition, AVS might

> >>

> >> |be a 1% risk.

> >>

> >> |

> >>

> >> |Is there actual data out there showing a 1% death rate from

> >>

> >> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> >>

> >> |complication rate. I didn't see any actual deaths reported.

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >

> >

> >

> >

> >

>

[Guest guest]

Data is not really available but I have see one pt out of mAybe 100 I have been involved with who infarcted on adrenal and had lots of pain formsome time but PA WAS better. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I'm finding articles regarding the death rate from adrenal surgery. In a study of 1577 patients the death rate was 0.3% for adrenal SURGERY. I couldn't find any deaths related directly to adrenal vein sampling.

At a rate of .3%, this is 3,000 people out of a million people would die from the surgery. This is for all people going through the surgery, not just PA cases. I imagine if you have cancer, severe heart disease, are elderly, or morbidly obese your odds might be different.

I am hoping a doctor who monitors this groups can help us to understand the actual risks of both Adrenal Vein Sampling and Surgery.

How risky is it?

> >>

> >> From: StudyCircle <studycircle@>

> >> Subject: RE: Re: AVS now recommended for me based on Spiro trial

> >> To: hyperaldosteronism

> >> Date: Friday, April 22, 2011, 4:30 PM

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> ÂÂ

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Mayo record is 1% death rate reported at 2.5% of the times (=

> >>

> >> %complications) which 1/.025=40% death overall!!!

> >>

> >>

> >>

> >> |

> >>

> >> |I saw the 1% statistic on AVS. However, I am unable to find

> >>

> >> |any reliable studies showing a 1% death rate from Adrenal Vein

> >>

> >> |Sampling. In fact, I am finding it hard to find even one

> >>

> >> |death reported in a normal individual. I guess if someone is

> >>

> >> |elderly, has a pheo, or an unknown heart condition, AVS might

> >>

> >> |be a 1% risk.

> >>

> >> |

> >>

> >> |Is there actual data out there showing a 1% death rate from

> >>

> >> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> >>

> >> |complication rate. I didn't see any actual deaths reported.

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >

> >

> >

> >

> >

>

[Guest guest]

The real issue is if u do well on DASH and MCBS why risk it at all. Fair bit or radiation as well which so has a risk nTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I'm finding articles regarding the death rate from adrenal surgery. In a study of 1577 patients the death rate was 0.3% for adrenal SURGERY. I couldn't find any deaths related directly to adrenal vein sampling.

At a rate of .3%, this is 3,000 people out of a million people would die from the surgery. This is for all people going through the surgery, not just PA cases. I imagine if you have cancer, severe heart disease, are elderly, or morbidly obese your odds might be different.

I am hoping a doctor who monitors this groups can help us to understand the actual risks of both Adrenal Vein Sampling and Surgery.

How risky is it?

> >>

> >> From: StudyCircle <studycircle@>

> >> Subject: RE: Re: AVS now recommended for me based on Spiro trial

> >> To: hyperaldosteronism

> >> Date: Friday, April 22, 2011, 4:30 PM

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> ÂÂ

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Mayo record is 1% death rate reported at 2.5% of the times (=

> >>

> >> %complications) which 1/.025=40% death overall!!!

> >>

> >>

> >>

> >> |

> >>

> >> |I saw the 1% statistic on AVS. However, I am unable to find

> >>

> >> |any reliable studies showing a 1% death rate from Adrenal Vein

> >>

> >> |Sampling. In fact, I am finding it hard to find even one

> >>

> >> |death reported in a normal individual. I guess if someone is

> >>

> >> |elderly, has a pheo, or an unknown heart condition, AVS might

> >>

> >> |be a 1% risk.

> >>

> >> |

> >>

> >> |Is there actual data out there showing a 1% death rate from

> >>

> >> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5%

> >>

> >> |complication rate. I didn't see any actual deaths reported.

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >> |

> >>

> >

> >

> >

> >

> >

>

[Guest guest]

Hi , thought I'd post this in case you hadn't already found this brief Mayo Clinic article , which cites a complication rate of 2.5% for AVS:"At centers with experience with AVS, the complication rate is 2.5% or less. Complications may include: * Symptomatic groin hematoma * Adrenal hemorrhage * Dissection of an adrenal vein"The key words, I think, being "at centers with experience with AVS" - I would suspect that rate goes up when the procedure is done by those without experience!- msmith192845,

female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day,

singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet> > >> > > >> From: StudyCircle <studycircle@>> > >> Subject: RE: Re: AVS now recommended for me based on Spiro trial> > >> To: hyperaldosteronism > > >> Date: Friday, April 22, 2011, 4:30 PM> > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >>  > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> Mayo record is 1% death rate reported at 2.5% of the times (=> > >> > > >> %complications) which 1/.025=40% death overall!!!> > >> > > >> > > >> > > >> |> > >> > > >> |I saw the 1% statistic on AVS. However, I am unable to find > > >> > > >> |any reliable studies showing a 1% death rate from Adrenal Vein > > >> > > >> |Sampling. In fact, I am finding it hard to find even one > > >> > > >> |death reported in a normal individual. I guess if someone is > > >> > > >> |elderly, has a pheo, or an unknown heart condition, AVS might > > >> > > >> |be a 1% risk. > > >> > > >> |> > >> > > >> |Is there actual data out there showing a 1% death rate from > > >> > > >> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5% > > >> > > >> |complication rate. I didn't see any actual deaths reported.> > >> > > >> |> > >> > > >> |> > >> > > >> |> > >> > > >> |> > >>> > >> > >> > >> > >> > >> >>

[Guest guest]

Summarizes my 40 year experience well. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

Hi , thought I'd post this in case you hadn't already found this brief Mayo Clinic article , which cites a complication rate of 2.5% for AVS:"At centers with experience with AVS, the complication rate is 2.5% or less. Complications may include: * Symptomatic groin hematoma * Adrenal hemorrhage * Dissection of an adrenal vein"The key words, I think, being "at centers with experience with AVS" - I would suspect that rate goes up when the procedure is done by those without experience!- msmith192845,

female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone 28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day,

singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet> > >> > > >> From: StudyCircle <studycircle@>> > >> Subject: RE: Re: AVS now recommended for me based on Spiro trial> > >> To: hyperaldosteronism > > >> Date: Friday, April 22, 2011, 4:30 PM> > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >>  > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> Mayo record is 1% death rate reported at 2.5% of the times (=> > >> > > >> %complications) which 1/.025=40% death overall!!!> > >> > > >> > > >> > > >> |> > >> > > >> |I saw the 1% statistic on AVS. However, I am unable to find > > >> > > >> |any reliable studies showing a 1% death rate from Adrenal Vein > > >> > > >> |Sampling. In fact, I am finding it hard to find even one > > >> > > >> |death reported in a normal individual. I guess if someone is > > >> > > >> |elderly, has a pheo, or an unknown heart condition, AVS might > > >> > > >> |be a 1% risk. > > >> > > >> |> > >> > > >> |Is there actual data out there showing a 1% death rate from > > >> > > >> |Adrenal Vein Sampling? The stats at Mayo show only a 2.5% > > >> > > >> |complication rate. I didn't see any actual deaths reported.> > >> > > >> |> > >> > > >> |> > >> > > >> |> > >> > > >> |> > >>> > >> > >> > >> > >> > >> >>