Re: Any side effects of living with 1 adrenal gland after surgery?

[Guest guest]

There is no reason the remaining gland cannot take over the activity of the one you lost. But have to admit that no one has ever studied folks properly to really test this. CE Grim MDOn Feb 6, 2012, at 7:49 PM, parkinsoniowa wrote: I had an adrenalectomy (right side) 6 years ago. I am currently drug free with no major blood pressure issues. I'm wondering if anyone is experiencing any side effects of living with 1 adrenal gland. Has anyone noticed a difference in their ability to handle stress? Is anxiety or depression an issue for anyone? Any memory or concentration issues? Any sleep issues? Is fatigue still an issue? Weight gain? Thanks.

[Guest guest]

I can report on a study of one. My mother had a kidney removed at age ~25.

During the operation they found she was pregnant with her first child. I saw

none of the symptoms you describe that I can attribute to the missing adrenal.

(Now there may have been a little stress and fatigue from raising 6 children!)

She had great life, living to age 87.

.....

>

> > I had an adrenalectomy (right side) 6 years ago. I am currently drug

> > free with no major blood pressure issues. I'm wondering if anyone is

> > experiencing any side effects of living with 1 adrenal gland. Has

> > anyone noticed a difference in their ability to handle stress? Is

> > anxiety or depression an issue for anyone? Any memory or

> > concentration issues? Any sleep issues? Is fatigue still an issue?

> > Weight gain? Thanks.

> >

> >

>

[Guest guest]

I had an Adx last September, & still have fatigue & migraines, which I had hoped

would lessen after the Adx, but I now believe were underlying issues. I also

have concentration, memory & sleep issues, which I also believe are not related

to PA or the Adx.

I am curious how you are doing. I don't think that I had seen anyone post here

who is more than 2 years from an Adx.

Lucy Sage

Please forgive brevity & typos

Sent from my droid

parkinsoniowa <parkinsoniowa@...> wrote:

>I had an adrenalectomy (right side) 6 years ago. I am currently drug free with

no major blood pressure issues. I'm wondering if anyone is experiencing any side

effects of living with 1 adrenal gland. Has anyone noticed a difference in

their ability to handle stress? Is anxiety or depression an issue for anyone?

Any memory or concentration issues? Any sleep issues? Is fatigue still an

issue? Weight gain? Thanks.

>

[Guest guest]

I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!??Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again!I'm now taking Spironolactone prior to surgery and still feel great.Do you have to have the surgery?! I have two small adenoma's in my left adrenal.

[Guest guest]

My adrenalectomy was just this past October. So far I can only say positive things about most of the issues you addressed: For the first time in over 10 years, I'm back down to my pre-illness weight without even trying and seem to be able to eat what I want without weight gain. This is probably easier for me as I do have a restricted diet and by default cannot eat junk food or processed food of any kind. Anxiety is completely gone. Prior to the surgery I felt constant, low-grade anxiety that never went away. Depression was never an issue so I can't really comment on that.Sleep is pretty normal for once in my life - prior to the surgery, I stayed up late (couldn't seem to wind down before 1am, ever!) and slept in late when I could; now I'm usually in bed by midnight and up by 8. Memory and concentration are far better - this was something I noticed the day I came home from the hospital.Fatigue and handling stress have not been problematic - both were far worse before the surgery.However, there is a former member of this site who no longer posts here but still keeps a blog of her post-ADX symptoms, and she seems to have a lot of issues with some of the things you have mentioned: http://hyperaldosteronism.blogspot.com-msmith1928Left laparoscopic adrenalectomy 10/13/2011Celiac disease and hereditary fructose intolerance>> I had an adrenalectomy (right side) 6 years ago. I am currently drug free with no major blood pressure issues. I'm wondering if anyone is experiencing any side effects of living with 1 adrenal gland. Has anyone noticed a difference in their ability to handle stress? Is anxiety or depression an issue for anyone? Any memory or concentration issues? Any sleep issues? Is fatigue still an issue? Weight gain? Thanks.>

[Guest guest]

What has your post op renin and aldo numbers been.Recall that I think most PA is bilateral and many will slowly develop it again.Can you give details of the migraines.?CE Grim MDOn Feb 7, 2012, at 5:03 AM, Lucy Sage wrote: I had an Adx last September, & still have fatigue & migraines, which I had hoped would lessen after the Adx, but I now believe were underlying issues. I also have concentration, memory & sleep issues, which I also believe are not related to PA or the Adx. I am curious how you are doing. I don't think that I had seen anyone post here who is more than 2 years from an Adx. Lucy Sage Please forgive brevity & typos Sent from my droid parkinsoniowa <parkinsoniowa@...> wrote: >I had an adrenalectomy (right side) 6 years ago. I am currently drug free with no major blood pressure issues. I'm wondering if anyone is experiencing any side effects of living with 1 adrenal gland. Has anyone noticed a difference in their ability to handle stress? Is anxiety or depression an issue for anyone? Any memory or concentration issues? Any sleep issues? Is fatigue still an issue? Weight gain? Thanks. >

[Guest guest]

That's great to hear so many positives about how you're feeling post surgery! I

just seem to read so many posts where things have not improved particularly

except possibly the hypertension.

I'm awaiting surgery and i too am a coeliac, so am looking forward to shaking

off some weight!

> >

> > I had an adrenalectomy (right side) 6 years ago. I am currently drug

> free with no major blood pressure issues. I'm wondering if anyone is

> experiencing any side effects of living with 1 adrenal gland. Has

> anyone noticed a difference in their ability to handle stress? Is

> anxiety or depression an issue for anyone? Any memory or concentration

> issues? Any sleep issues? Is fatigue still an issue? Weight gain?

> Thanks.

> >

>

[Guest guest]

From what I under stand what Dr grim says. If you have more then one adenoma on

the same side then you most likey have them on the other side or soon will have.

Do you have your AVS report?

>

> I have recently been diagnosed with Conn's, and am due for surgery shortly.

However having read about so many people still having lots of the same symptoms

post-surgery. I'm wondering whether the surgery is actually worth it!??

> Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in

my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> I'm now taking Spironolactone prior to surgery and still feel great.

>

> Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

>

[Guest guest]

Hi , the short answer is NO, in fact Dr. Grim advocates the medical

approach and the DASH eating plan.

I don't know your story, comorbid conditions, BP, age, etc. (I have done a lot

of research and am in fact in the process of seeing if I am candidate for

surgery, I have tumor in my right adrenal.)

I had all the symptoms you reported and a few more (T2DM, COPD, f/t Oxygen,

ect.) BP was well controlled for 18 months and everything was well controlled

for 7 (it took me 10 months to figure DASH and get my NA under control.) I was

real excited the day they loaded my oxygen tanks, all 42 of them, on the truck

and I was no longer tethered to a plastic hose! (The low oxygen was caused by

LVH which resolved after 12 weeks!) All this was on 25MG bid of Spironolactone

and DASH! Gynecomstia got bad enough from low testosterone, caused by spiro

sometimes in males, that I had to change.

I usually don't make recommendations but if I was doing it and well controlled

on spiro w/o adverse SX, I'd stay the course, start DASHing if you haven't

already. You can always have surgery later if necessary but you can't do the

reverse once the adrenal is removed!

Hope this helps, keep us posted and welcome aboard!

- 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with

previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 175/90 HR 59

BS 125. D/C Spironolactone 12/20/2011 due to adverse SX.

Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD

and PTSD.

Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, AmlodipineBesylate

5mg, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11

to prepare for AVS.

>

> I have recently been diagnosed with Conn's, and am due for surgery shortly.

However having read about so many people still having lots of the same symptoms

post-surgery. I'm wondering whether the surgery is actually worth it!??

> Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in

my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> I'm now taking Spironolactone prior to surgery and still feel great.

>

> Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

>

[Guest guest]

My " short answer " was for your second question, each person has to answer the

first question for themself! I suspect we hear more of the failures because

they are still searching for answers. The successful one are out having fun,

except for the few that stick with us to remind us of their experience. It

certainly helps balance the experience!

> >

> > I have recently been diagnosed with Conn's, and am due for surgery shortly.

However having read about so many people still having lots of the same symptoms

post-surgery. I'm wondering whether the surgery is actually worth it!??

> > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain

in my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> > I'm now taking Spironolactone prior to surgery and still feel great.

> >

> > Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

> >

>

[Guest guest]

What do you mean " many will slowly develop it again? "

I had the gland and tumor removed. Can I develop new problems or new tumors with

the remaining gland?

> >

> > >I had an adrenalectomy (right side) 6 years ago. I am currently

> > drug free with no major blood pressure issues. I'm wondering if

> > anyone is experiencing any side effects of living with 1 adrenal

> > gland. Has anyone noticed a difference in their ability to handle

> > stress? Is anxiety or depression an issue for anyone? Any memory or

> > concentration issues? Any sleep issues? Is fatigue still an issue?

> > Weight gain? Thanks.

> > >

> >

>

[Guest guest]

I'm getting a little freaked out. I had the right gland and tumor removed 6

years ago. Are you saying that it is likely, possible or probable to have new

tumors appear on the remaining gland? God, I hope not! I'm so sick of this

diagnosis!

> >

> > I have recently been diagnosed with Conn's, and am due for surgery shortly.

However having read about so many people still having lots of the same symptoms

post-surgery. I'm wondering whether the surgery is actually worth it!??

> > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain

in my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> > I'm now taking Spironolactone prior to surgery and still feel great.

> >

> > Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

> >

>

[Guest guest]

Seems like most of the " success stories " just disappear from this forum after

their surgery (or for that matter, successful management by drugs/diet). When I

was diagnosed, I sort of made it my mission that *something* good was going to

come of this situation - so my hope is that by hanging around and continuing to

check in, somehow I'll be able to help others. At least I like to think I'm

helping

As for the weight - I've heard from several adrenalectomy patients that they

dropped 15 pounds from the surgery. In my case it was 10, but I didn't weigh

that much to begin with (low 120s, now 111). This is likely from salt/water

retention that is resolved after the tumor is gone.

> > >

> > > I had an adrenalectomy (right side) 6 years ago. I am currently drug

> > free with no major blood pressure issues. I'm wondering if anyone is

> > experiencing any side effects of living with 1 adrenal gland. Has

> > anyone noticed a difference in their ability to handle stress? Is

> > anxiety or depression an issue for anyone? Any memory or concentration

> > issues? Any sleep issues? Is fatigue still an issue? Weight gain?

> > Thanks.

> > >

> >

>

[Guest guest]

How old are you?Family Hx of HTN?Really need your complete story to be able to help faster.CE Grim MDOn Feb 7, 2012, at 6:52 AM, Chambers wrote: I have recently been diagnosed with Conn's, and am due for surgery shortly. However having read about so many people still having lots of the same symptoms post-surgery. I'm wondering whether the surgery is actually worth it!??Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in my legs, brain fog, unable to socialise or concentrate on anything!)for many years, then taking potassium to correct my levels, i feel completely normal again!I'm now taking Spironolactone prior to surgery and still feel great.Do you have to have the surgery?! I have two small adenoma's in my left adrenal.

[Guest guest]

Yes it's great to hear SOME success stories. Can i just ask. Which is the test that determines whether you have a Pheochromocytoma?! At present i've just been told that i have two aldosterone producing adrenal adenoma's (smaller than 2cm's) also what is

the purpose of AVS?! As i've been informed that they don't need to do this?!Many thanks From: msmith_1928 <janeray1940@...> hyperaldosteronism Sent: Wednesday, 8 February 2012, 15:33 Subject: Re: Any side effects of living with 1 adrenal gland after surgery?

Seems like most of the "success stories" just disappear from this forum after their surgery (or for that matter, successful management by drugs/diet). When I was diagnosed, I sort of made it my mission that *something* good was going to come of this situation - so my hope is that by hanging around and continuing to check in, somehow I'll be able to help others. At least I like to think I'm helping

As for the weight - I've heard from several adrenalectomy patients that they dropped 15 pounds from the surgery. In my case it was 10, but I didn't weigh that much to begin with (low 120s, now 111). This is likely from salt/water retention that is resolved after the tumor is gone.

> > >

> > > I had an adrenalectomy (right side) 6 years ago. I am currently drug

> > free with no major blood pressure issues. I'm wondering if anyone is

> > experiencing any side effects of living with 1 adrenal gland. Has

> > anyone noticed a difference in their ability to handle stress? Is

> > anxiety or depression an issue for anyone? Any memory or concentration

> > issues? Any sleep issues? Is fatigue still an issue? Weight gain?

> > Thanks.

> > >

> >

>

[Guest guest]

Yes, I have seen the blog. It was her blog that lead me to this group. Thank

you for your reply.

> >

> > I had an adrenalectomy (right side) 6 years ago. I am currently drug

> free with no major blood pressure issues. I'm wondering if anyone is

> experiencing any side effects of living with 1 adrenal gland. Has

> anyone noticed a difference in their ability to handle stress? Is

> anxiety or depression an issue for anyone? Any memory or concentration

> issues? Any sleep issues? Is fatigue still an issue? Weight gain?

> Thanks.

> >

>

[Guest guest]

Look at this study and then decide if you should have AVS. But only would have

AVS if you still think surgery is your best option.

Systematic review: diagnostic procedures to differentiate unilateral from

bilateral adrenal abnormality in primary aldosteronism.

Kempers MJ, Lenders JW, van Outheusden L, van der Wilt GJ, Schultze Kool LJ,

Hermus AR, Deinum J.

SourceRadboud University Nijmegen Medical Centre, Nijmegen, the Netherlands.

Abstract

BACKGROUND: Computed tomography (CT), magnetic resonance imaging (MRI), and

adrenal vein sampling (AVS) are used to distinguish unilateral from bilateral

increased aldosterone secretion as a cause of primary aldosteronism. This

distinction is crucial because unilateral primary aldosteronism can be treated

surgically, whereas bilateral primary aldosteronism should be treated medically.

PURPOSE: To determine the proportion of patients with primary aldosteronism

whose CT or MRI results with regard to unilateral or bilateral adrenal

abnormality agreed or did not agree with those of AVS.

DATA SOURCES: PubMed, MEDLINE, EMBASE, and Cochrane Library, 1977 to April 2009.

STUDY SELECTION: Studies describing adults with primary aldosteronism who

underwent CT/MRI and AVS were included. Of 472 initially identified studies, 38

met the selection criteria; extractable data were available for 950 patients.

DATA EXTRACTION: The CT/MRI result was considered accurate when AVS showed

unilaterally increased aldosterone secretion on the same side as the abnormality

seen on CT/MRI or when AVS showed symmetric aldosterone secretion and CT/MRI

revealed bilateral or no unilateral abnormality.

DATA SYNTHESIS: In 37.8% of patients (359 of 950), CT/MRI results did not agree

with AVS results. If only CT/MRI results had been used to determine

lateralization of an adrenal abnormality, inappropriate adrenalectomy would have

occurred in 14.6% of patients (where AVS showed a bilateral problem),

inappropriate exclusion from adrenalectomy would have occurred in 19.1% (where

AVS showed unilateral secretion), and adrenalectomy on the wrong side would have

occurred in 3.9% (where AVS showed aldosterone secretion on the opposite side).

LIMITATION: The lack of follow-up data in the included articles made it

impossible to confirm that adrenalectomies were performed appropriately.

CONCLUSION: When AVS is used as the criterion standard test for diagnosing

laterality of aldosterone secretion in patients with primary aldosteronism,

CT/MRI misdiagnosed the cause of primary aldosteronism in 37.8% of patients.

Relying only on CT/MRI may lead to inappropriate treatment of patients with

primary aldosteronism

> >

> > I have recently been diagnosed with Conn's, and am due for surgery shortly.

However having read about so many people still having lots of the same symptoms

post-surgery. I'm wondering whether the surgery is actually worth it!??

> > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain

in my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> > I'm now taking Spironolactone prior to surgery and still feel great.

> >

> > Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

> >

>

[Guest guest]

FWIW, I had an Adx without trying spiro or ephler. because: (1) it was what my

endo recommended (my nepro when asked what she would do if she were me, said she

would try spiro); (2) my K was so low that I was taking 175 MEQ of K & it

seemed like most on spiro or ephler still needed K supplements; (3) I have

chronic gastritis which flared up from the K, & a side effect of MCBs is stomach

issues; (4) I am 59 & I did not want to wait for another year (trying MCBs) to

have the Adx; & (5) most of the literature I read, primarily from this site

recommended it. That bring said, had I known or seen studies that showed that

other adrenal eventually is affected with PA, I likely would have tried MCBs

first. The idea that Adx is not reversible is compelling reason to try medical

route. Nonetheless, I don't like to take medication & my gut feeling was to

have the Adx. However, I would not have had an Adx without an AVS. Every

abstract I read recomends it. Just because there is an adenoma in my adrenal

does not mean there is not one in the other adrenal or that the adenoma is the

problem. My AVS cost my insurance around $5,000. My Adx cost around $20,000.

Lucy Sage

Adx Sept. 2012

Path report showed 6 x 7 mm nonmalignent cortical adenoma

Please forgive brevity & typos

Sent from my droid

<jclark24p@...> wrote:

>Hi , the short answer is NO, in fact Dr. Grim advocates the medical

approach and the DASH eating plan.

>

>I don't know your story, comorbid conditions, BP, age, etc. (I have done a lot

of research and am in fact in the process of seeing if I am candidate for

surgery, I have tumor in my right adrenal.)

>

>I had all the symptoms you reported and a few more (T2DM, COPD, f/t Oxygen,

ect.) BP was well controlled for 18 months and everything was well controlled

for 7 (it took me 10 months to figure DASH and get my NA under control.) I was

real excited the day they loaded my oxygen tanks, all 42 of them, on the truck

and I was no longer tethered to a plastic hose! (The low oxygen was caused by

LVH which resolved after 12 weeks!) All this was on 25MG bid of Spironolactone

and DASH! Gynecomstia got bad enough from low testosterone, caused by spiro

sometimes in males, that I had to change.

>

>I usually don't make recommendations but if I was doing it and well controlled

on spiro w/o adverse SX, I'd stay the course, start DASHing if you haven't

already. You can always have surgery later if necessary but you can't do the

reverse once the adrenal is removed!

>

>Hope this helps, keep us posted and welcome aboard!

>

> - 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with

previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 175/90 HR 59

BS 125. D/C Spironolactone 12/20/2011 due to adverse SX.

>Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia,

MDD and PTSD.

>Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, AmlodipineBesylate

5mg, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11

to prepare for AVS.

>

>

>

>>

>> I have recently been diagnosed with Conn's, and am due for surgery shortly.

However having read about so many people still having lots of the same symptoms

post-surgery. I'm wondering whether the surgery is actually worth it!??

>> Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in

my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

>> I'm now taking Spironolactone prior to surgery and still feel great.

>>

>> Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

>>

>

>

[Guest guest]

I have a problem with this review due to the quality and lack of control of the

input. I believe there were major inhancements made to the scanning equipment

in the 33 years this review covered. They also made no attempt to qualify the

human factor or even identify if the protocol changed! I think we are all in

agreement that more experience is usually better.

I also think the decision as to whether you will have surgery is a lot more

complicated than just deciding if you think it is your best option. If the DX

is confirmed via labs and ct-scan that you have PA, the best time to do an AVS

is before you start MCBs. You still don't know if or how well meds and dash

will work. (Cost is definate factor.)

I can assure you that treating and watching everything resolve and then watching

everything fall apart sucks! (The last two times they have checked my oxygen it

was down to 90 where it was 94 6 weeks ago!)

Sometimes the known is worse than the unknown!

> > >

> > > I have recently been diagnosed with Conn's, and am due for surgery

shortly. However having read about so many people still having lots of the same

symptoms post-surgery. I'm wondering whether the surgery is actually worth it!??

> > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain

in my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> > > I'm now taking Spironolactone prior to surgery and still feel great.

> > >

> > > Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

> > >

> >

>

[Guest guest]

Both aldo & renin were low. Cortisol was also low, so I had ACTH stimulation,

which I passed. I have headaches more than 50% of the time, which are dull &

tight on my forehead & sinuses, to the right & in the back of my head. When they

get bad, which happens 5 or 6, times/month, they are sharp & trobbing, I become

sensitive to light, noise, touch & smell. When they get really bad, I throw up.

Fortunately I can take Nabumtone or inject Toradol before most reach that point.

I have had migraines & headaches like this since 2002. I think they are related

to menopause.

Lucy Sage

Please forgive brevity & typos

Sent from my droid

Clarence Grim <lowerbp2@...> wrote:

>What has your post op renin and aldo numbers been.

>

>Recall that I think most PA is bilateral and many will slowly develop

>it again.

>

>Can you give details of the migraines.?

>

>CE Grim MD

>

>

>On Feb 7, 2012, at 5:03 AM, Lucy Sage wrote:

>

>> I had an Adx last September, & still have fatigue & migraines, which

>> I had hoped would lessen after the Adx, but I now believe were

>> underlying issues. I also have concentration, memory & sleep issues,

>> which I also believe are not related to PA or the Adx.

>>

>> I am curious how you are doing. I don't think that I had seen anyone

>> post here who is more than 2 years from an Adx.

>>

>> Lucy Sage

>>

>> Please forgive brevity & typos

>> Sent from my droid

>>

>> parkinsoniowa <parkinsoniowa@...> wrote:

>>

>> >I had an adrenalectomy (right side) 6 years ago. I am currently

>> drug free with no major blood pressure issues. I'm wondering if

>> anyone is experiencing any side effects of living with 1 adrenal

>> gland. Has anyone noticed a difference in their ability to handle

>> stress? Is anxiety or depression an issue for anyone? Any memory or

>> concentration issues? Any sleep issues? Is fatigue still an issue?

>> Weight gain? Thanks.

>> >

>>

>

[Guest guest]

I had an adrenalectomy in June without AVS - based entirely on MRI and the

various hormone levels. I realised it was a risk but the endocrinologist here

(I'm in Switzerland) reckoned the odds were high in my favour (under 40,

discrete growth of 20mm on one side, other side clear, recent onset). The

surgery went really smoothly and I am officially cured. Before surgery my BP

without meds was up at about 170/110 on a regular basis, last time I checked

(last week?) it was 115/75. I never had any other symptoms from PA so I can't

claim a huge change of quality of life - I was healthy before and I still am.

So clearly you need to evaluate the risks with your own doctors and AVS is the

way to go if you want to be absolutely sure. But my specialists reckoned it was

extremely unlikely to recur on the other side - and I reckoned if it did, I'd

just have to be on drugs for life. Since that's what I was facing before

surgery, even if it does come back, I should have bought myself a few more years

drug free.

And FWIW, I have a friend who was diagnosed with kidney cancer at a very young

age (3ish from memory) and lost one kidney then. It then came back on the other

side so most of that had to be removed too. I must ask her the details of her

second adrenal gland but I presume she lost the first when her first kidney

went. Clearly she's still alive and well - now has four children and will be

turning 40 this year. So 37 years on and she's not suffered from the loss of

adrenal gland. She is careful about drinking alcohol etc. but mostly because she

knows her part kidney should not be overloaded.

Good luck!

Hester

> >

> > I have recently been diagnosed with Conn's, and am due for surgery shortly.

However having read about so many people still having lots of the same symptoms

post-surgery. I'm wondering whether the surgery is actually worth it!??

> > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain

in my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> > I'm now taking Spironolactone prior to surgery and still feel great.

> >

> > Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

> >

>

[Guest guest]

Had I been able to tolerate meds I might have considered not having surgery. I

tried spiro twice and had tons of side effects both times and felt absolutely

awful. I had planned to try eplerenone, but once I got the green-light for

surgery, my medical team and I decided that was the best option for me based on

my long history of difficulty tolerating drugs. So far I haven't regretted it.

As far as the likelihood of another tumor developing in the remaining adrenal,

my surgeon's best guess was that there is a 5% or less risk of that, based on

her experience. I know that this is just her educated guess, but I decided those

were odds I was willing to live with. My left adrenal had one clearly visible

tumor, was definitely overproducing aldo, and had an " enlarged and lumpy

appearance " to all the doctors who viewed my scans. My remaining right adrenal

was not overproducing and had a " normal " appearance.

I would not have opted for surgery WITHOUT getting AVS first, though. I know

that for those under 40, AVS is often skipped. I was 44 at the time of my

diagnosis and skipping it was not an option for me.

>

> I have recently been diagnosed with Conn's, and am due for surgery shortly.

However having read about so many people still having lots of the same symptoms

post-surgery. I'm wondering whether the surgery is actually worth it!??

> Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain in

my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> I'm now taking Spironolactone prior to surgery and still feel great.

>

> Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

>

[Guest guest]

The test to screen for pheos is plasma free metanephrines:

http://labtestsonline.org/understanding/analytes/plasma-metanephrine/tab/test

Dr. Grim can give you a more scientific answer than this but basically AVS is

the only test that will show with accuracy (if done right!) which of the

adrenals (or both) is overproducing aldosterone.

> > > >

> > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug

> > > free with no major blood pressure issues. I'm wondering if anyone is

> > > experiencing any side effects of living with 1 adrenal gland. Has

> > > anyone noticed a difference in their ability to handle stress? Is

> > > anxiety or depression an issue for anyone? Any memory or concentration

> > > issues? Any sleep issues? Is fatigue still an issue? Weight gain?

> > > Thanks.

> > > >

> > >

> >

>

[Guest guest]

The medical advice I got was that it was highly unlikely. Don't know on what

research but you're six years on and doing well, that's a good sign, isn't it?

> > >

> > > I have recently been diagnosed with Conn's, and am due for surgery

shortly. However having read about so many people still having lots of the same

symptoms post-surgery. I'm wondering whether the surgery is actually worth it!??

> > > Having felt dreadful (Chronic fatigue, heart arythmia's, swelling and pain

in my legs, brain fog, unable to socialise or concentrate on anything!)for many

years, then taking potassium to correct my levels, i feel completely normal

again!

> > > I'm now taking Spironolactone prior to surgery and still feel great.

> > >

> > > Do you have to have the surgery?! I have two small adenoma's in my left

adrenal.

> > >

> >

>

[Guest guest]

How old are you? Standard procedure in many hospitals (often required by

insurance companies) is to skip the AVS if you are < 40. I think it is a money

issue since most of the time it is true. So what if they do 1 or 2 unnecessry

operations, they save $25,000 everytime they skip an AVS! What do you mean you

object? Oh, it was your adrenal that was not overproducing, I see! Sorry!

The other thing is that many doctors do not understand the process. They read

where adrenals produce adenomas, adenomas can cause Conn's Syndrome. They then

see an adenoma on a ct-scan and walla, they assume the answer! (They forget

they were taught in school that " ASSUME sometimes makes an ASS out of U and ME!)

Ask your recommending doctor if excess aldosterome could be coming from anywhere

else. S/He needs to come up with the other adrenal and a few other organs like

maybe the heart, liver and I don't remember them all. The AVS measurers what is

coming out of the adrenal and if it is done right and the person interpretting

it knows how to read it they have the best chance of not needlessly removing an

unecessary adrenal. Hope that helps!

.....

> > > >

> > > > I had an adrenalectomy (right side) 6 years ago. I am currently drug

> > > free with no major blood pressure issues. I'm wondering if anyone is

> > > experiencing any side effects of living with 1 adrenal gland. Has

> > > anyone noticed a difference in their ability to handle stress? Is

> > > anxiety or depression an issue for anyone? Any memory or concentration

> > > issues? Any sleep issues? Is fatigue still an issue? Weight gain?

> > > Thanks.

> > > >

> > >

> >

>