Re: I just had Laparoscopic Adrenalectomy...

[Guest guest]

Welcome Miya. We'd love to hear your story. How long before you got a

diagnosis? Did you have AVS? Where was your surgery? Anything you'd like

to tell us.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of msmiya33

Aloha Dr. Grim and All,

My name is Miya. I live in Hawaii. I'm so glad to find this group

because by reading many people's adrenalectomy stories here, it gave me

the strength and encouragement to decide on having surgery on July 8,

2008.

Currently, 5days after the surgery I am on recovery stage and still in

pain but most importantly my BP is average from 120's/80's. I am still

amazed that my BP is normal range without the spiro... I was wondering

if spiro is still in my system but my Doctor said no. Is it true Dr.

Grim? Miya

[Guest guest]

Some will be around for some time. Some folks form aldactone bodies

which can be seen under a electron microscope and are thought to be

stored sprio.

No data on how long they persisit.

Any word on your pathology report. Please get one for you and your

family's health records.

CE Grim MD

On Jul 13, 2008, at 11:25 PM, msmiya33 wrote:

> Aloha Dr. Grim and All,

> My name is Miya. I live in Hawaii. I'm so glad to find this group

> because by reading many people's adrenalectomy stories here, it

> gave me

> the strength and encouragement to decide on having surgery on July 8,

> 2008.

> Currently, 5days after the surgery I am on recovery stage and still in

> pain but most importantly my BP is average from 120's/80's. I am still

> amazed that my BP is normal range without the spiro... I was wondering

> if spiro is still in my system but my Doctor said no. Is it true Dr.

> Grim? Miya

>

>

>

[Guest guest]

Aloha Val and All,

My story started since I had mysterious hives in 2003... All my

Doctor's couldn't figure it out why I was having hives but each

doctor told me I have high BP and low potassium. I'm still young and

not over weight and I didn't know what's goin on... They even asked

me if I vomited all the times because i had a low count of

potassium! They tried to give me BP meds and told me to eat bananas

and high potassium foods... None of my old Doctor's mentioned about

hyperaldosteronism or Conn's Syndrome... 4 years passed and I didn't

have hives after that but my main concerns were my body weaknesses,

numbness, tinglings, headaches, and muscle cramps etc overall, I

felt unhealthy! I decided to look for another Doctor because I felt

like I was wasting my time going to see my previous doctors. Luckily

my friends referred me to this doctor in 2007 Nov. I told my new

doctor all my symptoms. I guess she knew my diagnosis but she didn't

want to believe I had conn's because it's really rare. My new doctor

sent me to CT scan and the result? I had a right adreal gland

tumor... I was devastated but more relieved because I had the right

diadnosis! My new Doctor sent me to a specialist beginning of this

year and I started to take 40meq potassium and 50mg of spiro a day.

My potassium was really really low. I think it was 2.something! My

BP started to get lower after about 4 month after taking spiro. I

didn't have AVS I wish I had a AVS but I only had CT scan and 24

hour urine sample. My surgery was at Queen's Medical Hospital and My

surgeon and their teams were the best! All the staff was very

friendly and wonderful:) My surgeon never gave me any pressure to do

this operation and he told me I don't need to do this right away but

I could not imagine my life with taking the medication forever... I

also thougth very hard about having to start a family... So with

this in mind, i decided to go with the surgery. I will have follow

up appointments in the coming days regarding my condition and

status... So I will keep everyone posted...

Miya

>

> Welcome Miya. We'd love to hear your story. How long before you

got a

> diagnosis? Did you have AVS? Where was your surgery? Anything

you'd like

> to tell us.

>

> Val

[Guest guest]

Hello Miya and all,

My name is Schryka I am 30 years old and Miya my story is similar to

your's and since being diagnosed with this, I have had hives for some

odd reason then all of sudden feel weird when I eat certain foods, I

don't know if this has anything to do with it. But my surgery is in a

couple of weeks and I have never had any type of surgery done before,

so I am a little nervous. I am curious to know how you felt after the

surgery and how soon were you able to go back to your normal

activities? I am so glad I found this site, since this is a rare

condition.

> >

> > Welcome Miya. We'd love to hear your story. How long before you

> got a

> > diagnosis? Did you have AVS? Where was your surgery? Anything

> you'd like

> > to tell us.

> >

> > Val

>

[Guest guest]

Thanks for telling us about yourself. I believe Mayo Clinic does not

consider AVS essential in people under 40 yo who have Conn's as judged from

chemistry and a positive CT scan. Let us know how you are along the way. I

hope you are cured.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of msmiya33

Aloha Val and All,

My story started since I had mysterious hives in 2003... All my

Doctor's couldn't figure it out why I was having hives but each

doctor told me I have high BP and low potassium. I'm still young and

not over weight and I didn't know what's goin on... They even asked

me if I vomited all the times because i had a low count of

potassium! They tried to give me BP meds and told me to eat bananas

and high potassium foods... None of my old Doctor's mentioned about

hyperaldosteronism or Conn's Syndrome... 4 years passed and I didn't

have hives after that but my main concerns were my body weaknesses,

numbness, tinglings, headaches, and muscle cramps etc overall, I

felt unhealthy! I decided to look for another Doctor because I felt

like I was wasting my time going to see my previous doctors. Luckily

my friends referred me to this doctor in 2007 Nov. I told my new

doctor all my symptoms. I guess she knew my diagnosis but she didn't

want to believe I had conn's because it's really rare. My new doctor

sent me to CT scan and the result? I had a right adreal gland

tumor... I was devastated but more relieved because I had the right

diadnosis! My new Doctor sent me to a specialist beginning of this

year and I started to take 40meq potassium and 50mg of spiro a day.

My potassium was really really low. I think it was 2.something! My

BP started to get lower after about 4 month after taking spiro. I

didn't have AVS I wish I had a AVS but I only had CT scan and 24

hour urine sample. My surgery was at Queen's Medical Hospital and My

surgeon and their teams were the best! All the staff was very

friendly and wonderful:) My surgeon never gave me any pressure to do

this operation and he told me I don't need to do this right away but

I could not imagine my life with taking the medication forever... I

also thougth very hard about having to start a family... So with

this in mind, i decided to go with the surgery. I will have follow

up appointments in the coming days regarding my condition and

status... So I will keep everyone posted...

Miya

[Guest guest]

On Jul 15, 2008, at 11:51 AM, Valarie wrote:

> Thanks for telling us about yourself. I believe Mayo Clinic does not

> consider AVS essential in people under 40 yo who have Conn's as

> judged from

> chemistry and a positive CT scan. Let us know how you are along the

> way. I

> hope you are cured.

>

> Val

> That is because they must not have operated on anyone who had a

> lipoma that showed up on the scan and was not causing PA. and then

> the other adreanl had to come out to reverse the problem.

>

> From: hyperaldosteronism

>

>

> For my patients I do not want to gamble on this after one experience.

>

> Having no adrenals is not an easy problem to manage.

>

> [mailto:hyperaldosteronism ] On Behalf Of msmiya33

>

> Aloha Val and All,

>

> My story started since I had mysterious hives in 2003... All my

> Doctor's couldn't figure it out why I was having hives but each

> doctor told me I have high BP and low potassium.

>

> I'm guessing you were on an ACE inhibitor when you were having the

> hives to try to control the BP. They dont work in PA and as some

> push them up thinking they will work get into side effects of ACEs

> eg hives.

>

> Please detail the drugs you were on when the hives started.

>

> I'm still young and

> not over weight and I didn't know what's goin on... They even asked

> me if I vomited all the times because i had a low count of

> potassium!

>

> This is a classic quesiton to ask unless you also have HTN then you

> do renin and aldo testing and a 24 hr urine to look at where the K

> is going. If you are vomiting the urine K will be low. If it is

> not then PA is very likely.

>

> They tried to give me BP meds and told me to eat bananas

> and high potassium foods... None of my old Doctor's mentioned about

> hyperaldosteronism or Conn's Syndrome... 4 years passed and I didn't

> have hives after that but my main concerns were my body weaknesses,

> numbness, tinglings, headaches, and muscle cramps etc overall, I

> felt unhealthy!

>

> I decided to look for another Doctor because I felt

> like I was wasting my time going to see my previous doctors.

>

> Good judgement. Should have done this earlier. Plesae send my

> evolution of PA article in our files to every Dr who missed this

> DX. You will help all future pts they see or have missed for years.

>

> Luckily

> my friends referred me to this doctor in 2007 Nov. I told my new

> doctor all my symptoms. I guess she knew my diagnosis but she didn't

> want to believe I had conn's because it's really rare.

>

R

> Remind this Dr that rare things do occur and classic symptoms like

> you have should have nailed the DX on your first visit.

>

> My new doctor

> sent me to CT scan and the result? I had a right adreal gland

> tumor... I was devastated but more relieved because I had the right

> diadnosis! My new Doctor sent me to a specialist beginning of this

> year and I started to take 40meq potassium and 50mg of spiro a day.

> My potassium was really really low. I think it was 2.something! My

> BP started to get lower after about 4 month after taking spiro. I

> didn't have AVS I wish I had a AVS but I only had CT scan and 24

> hour urine sample. My surgery was at Queen's Medical Hospital and My

> surgeon and their teams were the best! All the staff was very

> friendly and wonderful:) My surgeon never gave me any pressure to do

> this operation and he told me I don't need to do this right away but

> I could not imagine my life with taking the medication forever... I

> also thougth very hard about having to start a family... So with

> this in mind, i decided to go with the surgery. I will have follow

> up appointments in the coming days regarding my condition and

> status... So I will keep everyone posted...

>

> As you will note in the new Endo guidelines the recommend AVS for

> all cases of suspected Conn's.

>

>

>

> Miya

>

>

[Guest guest]

To Dr. Grim,

I wasn't on any medications when I had hives. I didn't even know I

had hypertension until this Dr visit. I didn't even vomit.

I wish I knew about AVS None of my doctors mentioned it. I know it's

done and my right adrenal gland is gone...

My adrenal gland pathology report results were the Adrenal Cortical

Adenoma in which i was relieved... Miya

> > My story started since I had mysterious hives in 2003... All my

Doctor's couldn't figure it out why I was having hives but each

doctor told me I have high BP and low potassium.

> > I'm guessing you were on an ACE inhibitor when you were having

the hives to try to control the BP. They dont work in PA and as

some push them up thinking they will work get into side effects of

ACEs eg hives. Please detail the drugs you were on when the hives

started.

> > I'm still young and not over weight and I didn't know what's

goin on... They even asked me if I vomited all the times because i

had a low count of potassium!

> > This is a classic quesiton to ask unless you also have HTN then

you do renin and aldo testing and a 24 hr urine to look at where the

K is going. If you are vomiting the urine K will be low. If it is

not then PA is very likely.

> > As you will note in the new Endo guidelines the recommend AVS

for all cases of suspected Conn's.

[Guest guest]

Hello Schryka,

First of all, I will be hoping the best for you. As far as the

surgery, I know what your mind will be going through. Believe me I

was very very nervous too! The best advice i can give you before

your surgery is first, you must be mentally strong and ready to have

a positive mind set overcoming this disease. Also they will send you

to Anesthesia Preoperative Evaluation Center(APEC) for your physical

evaluation before the surgery. You have to be physically ready for

the surgery. At the time at APEC, i would write all your questions

or concerns and addressed it to them.

My surgery took about 2 hous After the surgery. They made 4 small

incisions in the right side of my abdomen (I wish only 3...) After

the surgery I was very sleepy, had sore throat caused by the

insertion of the tube through the mouth into the airway I couldn't

really talk. I was nauseated for the first day or two I only could

take clear liquids. Also I felt bloated in my abdomen. Its

embarrassing but you must pass gas due to the Carbon dioxide gas

which will be inserted in your abdominal cavity to make room for the

surgeon to work. They encourage you after the surgery to get out of

bed and walk around or be active on your feet to release the gas, if

you are able to bear the pain. Coughing and deep breathing exercises

(they will explain to you before the surgery or during your hospital

stay)is an important part of your recovery and helps prevent

pneumonia and other pulmonary complications or other problems.

Today, a week after the surgery, I feel much better no pain

medications, but I still have discomfort in abdomen. The incisions

are healing although two of the incisions had blisters around it I

think it's because of the tape. I am still coughing on and off

especially at night while I am sleeping. This is because, I still

have some mucus in my lung area and I need to get it out. My BP is

normal range at this moment and I am so eager to know my potassium

level... I am going to my post-op visit this week and I will keep

you posted!

Miya

>

> Hello Miya and all,

>

> My name is Schryka I am 30 years old and Miya my story is similar

to

> your's and since being diagnosed with this, I have had hives for

some

> odd reason then all of sudden feel weird when I eat certain foods,

I

> don't know if this has anything to do with it. But my surgery is

in a

> couple of weeks and I have never had any type of surgery done

before,

> so I am a little nervous. I am curious to know how you felt after

the

> surgery and how soon were you able to go back to your normal

> activities? I am so glad I found this site, since this is a rare

> condition.

[Guest guest]

Thank you so much Miya, that is the information I was looking for. I

have my preoperative appointment on Friday. So I will be asking a lot

of questions, I just can't wait to get the whole thing over with.

It's good to know you feel a lot better after one week. I hope I

recover that fast. Well my surgery is 7/24/08 I will keep you guys

posted on how everything is going.

- In hyperaldosteronism , " msmiya33 " <msmiya33@...>

wrote:

>

> Hello Schryka,

>

> First of all, I will be hoping the best for you. As far as the

> surgery, I know what your mind will be going through. Believe me I

> was very very nervous too! The best advice i can give you before

> your surgery is first, you must be mentally strong and ready to

have

> a positive mind set overcoming this disease. Also they will send

you

> to Anesthesia Preoperative Evaluation Center(APEC) for your

physical

> evaluation before the surgery. You have to be physically ready for

> the surgery. At the time at APEC, i would write all your questions

> or concerns and addressed it to them.

>

> My surgery took about 2 hous After the surgery. They made 4 small

> incisions in the right side of my abdomen (I wish only 3...) After

> the surgery I was very sleepy, had sore throat caused by the

> insertion of the tube through the mouth into the airway I couldn't

> really talk. I was nauseated for the first day or two I only could

> take clear liquids. Also I felt bloated in my abdomen. Its

> embarrassing but you must pass gas due to the Carbon dioxide gas

> which will be inserted in your abdominal cavity to make room for

the

> surgeon to work. They encourage you after the surgery to get out of

> bed and walk around or be active on your feet to release the gas,

if

> you are able to bear the pain. Coughing and deep breathing exercises

> (they will explain to you before the surgery or during your

hospital

> stay)is an important part of your recovery and helps prevent

> pneumonia and other pulmonary complications or other problems.

>

> Today, a week after the surgery, I feel much better no pain

> medications, but I still have discomfort in abdomen. The incisions

> are healing although two of the incisions had blisters around it I

> think it's because of the tape. I am still coughing on and off

> especially at night while I am sleeping. This is because, I still

> have some mucus in my lung area and I need to get it out. My BP is

> normal range at this moment and I am so eager to know my potassium

> level... I am going to my post-op visit this week and I will keep

> you posted!

>

> Miya

>

>

>

>

>

>

>

>

>

>

>

> >

> > Hello Miya and all,

> >

> > My name is Schryka I am 30 years old and Miya my story is similar

> to

> > your's and since being diagnosed with this, I have had hives for

> some

> > odd reason then all of sudden feel weird when I eat certain

foods,

> I

> > don't know if this has anything to do with it. But my surgery is

> in a

> > couple of weeks and I have never had any type of surgery done

> before,

> > so I am a little nervous. I am curious to know how you felt after

> the

> > surgery and how soon were you able to go back to your normal

> > activities? I am so glad I found this site, since this is a rare

> > condition.

>

[Guest guest]

You need the actual report as many don't look at the entire gland in

detail and miss hyperplasia with one big nodule.'

Time will tell so keep us posted and sounds good so far.

On Jul 16, 2008, at 2:20 AM, msmiya33 wrote:

> To Dr. Grim,

> I wasn't on any medications when I had hives. I didn't even know I

> had hypertension until this Dr visit. I didn't even vomit.

> I wish I knew about AVS None of my doctors mentioned it. I know it's

> done and my right adrenal gland is gone...

> My adrenal gland pathology report results were the Adrenal Cortical

> Adenoma in which i was relieved... Miya

>

> > > My story started since I had mysterious hives in 2003... All my

> Doctor's couldn't figure it out why I was having hives but each

> doctor told me I have high BP and low potassium.

>

> > > I'm guessing you were on an ACE inhibitor when you were having

> the hives to try to control the BP. They dont work in PA and as

> some push them up thinking they will work get into side effects of

> ACEs eg hives. Please detail the drugs you were on when the hives

> started.

>

> > > I'm still young and not over weight and I didn't know what's

> goin on... They even asked me if I vomited all the times because i

> had a low count of potassium!

>

> > > This is a classic quesiton to ask unless you also have HTN then

> you do renin and aldo testing and a 24 hr urine to look at where the

> K is going. If you are vomiting the urine K will be low. If it is

> not then PA is very likely.

>

> > > As you will note in the new Endo guidelines the recommend AVS

> for all cases of suspected Conn's.

>

>

>

[Guest guest]

You want to know:

1. How many have they done?

2. What is their own cure rate at 1, 3, 5, 10 and 10+ years?

3. Are they going to do AVS (with ACTH infusion) first?

Keep us posted.

You might want to take them my evolution article and be sure you have

read it.

On Jul 16, 2008, at 8:33 AM, schryka wrote:

> Thank you so much Miya, that is the information I was looking for. I

> have my preoperative appointment on Friday. So I will be asking a lot

> of questions, I just can't wait to get the whole thing over with.

> It's good to know you feel a lot better after one week. I hope I

> recover that fast. Well my surgery is 7/24/08 I will keep you guys

> posted on how everything is going.

> - In hyperaldosteronism , " msmiya33 " <msmiya33@...>

> wrote:

> >

> > Hello Schryka,

> >

> > First of all, I will be hoping the best for you. As far as the

> > surgery, I know what your mind will be going through. Believe me I

> > was very very nervous too! The best advice i can give you before

> > your surgery is first, you must be mentally strong and ready to

> have

> > a positive mind set overcoming this disease. Also they will send

> you

> > to Anesthesia Preoperative Evaluation Center(APEC) for your

> physical

> > evaluation before the surgery. You have to be physically ready for

> > the surgery. At the time at APEC, i would write all your questions

> > or concerns and addressed it to them.

> >

> > My surgery took about 2 hous After the surgery. They made 4 small

> > incisions in the right side of my abdomen (I wish only 3...) After

> > the surgery I was very sleepy, had sore throat caused by the

> > insertion of the tube through the mouth into the airway I couldn't

> > really talk. I was nauseated for the first day or two I only could

> > take clear liquids. Also I felt bloated in my abdomen. Its

> > embarrassing but you must pass gas due to the Carbon dioxide gas

> > which will be inserted in your abdominal cavity to make room for

> the

> > surgeon to work. They encourage you after the surgery to get out of

> > bed and walk around or be active on your feet to release the gas,

> if

> > you are able to bear the pain. Coughing and deep breathing exercises

> > (they will explain to you before the surgery or during your

> hospital

> > stay)is an important part of your recovery and helps prevent

> > pneumonia and other pulmonary complications or other problems.

> >

> > Today, a week after the surgery, I feel much better no pain

> > medications, but I still have discomfort in abdomen. The incisions

> > are healing although two of the incisions had blisters around it I

> > think it's because of the tape. I am still coughing on and off

> > especially at night while I am sleeping. This is because, I still

> > have some mucus in my lung area and I need to get it out. My BP is

> > normal range at this moment and I am so eager to know my potassium

> > level... I am going to my post-op visit this week and I will keep

> > you posted!

> >

> > Miya

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > >

> > > Hello Miya and all,

> > >

> > > My name is Schryka I am 30 years old and Miya my story is similar

> > to

> > > your's and since being diagnosed with this, I have had hives for

> > some

> > > odd reason then all of sudden feel weird when I eat certain

> foods,

> > I

> > > don't know if this has anything to do with it. But my surgery is

> > in a

> > > couple of weeks and I have never had any type of surgery done

> > before,

> > > so I am a little nervous. I am curious to know how you felt after

> > the

> > > surgery and how soon were you able to go back to your normal

> > > activities? I am so glad I found this site, since this is a rare

> > > condition.

> >

>

>

>

[Guest guest]

Before we had good ways to test for PA most thought it was rare-even

tho our publication in JAMA in the 70s showed that nearly 10% of

hypertensives referred to our center had PA.

Our current data suggests that at least 5% of whites and perhaps 25%

of blacks with HTN have PA.

May your pressure be low!



CE Grim MS, MD

High Blood Pressure Consulting

Clinical Professor of Medicine Medical College of Wisconsin

Board certified in Internal Med, Geriatrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

On Jul 15, 2008, at 8:40 AM, schryka wrote:

> Hello Miya and all,

>

> My name is Schryka I am 30 years old and Miya my story is similar to

> your's and since being diagnosed with this, I have had hives for some

> odd reason then all of sudden feel weird when I eat certain foods, I

> don't know if this has anything to do with it. But my surgery is in a

> couple of weeks and I have never had any type of surgery done before,

> so I am a little nervous. I am curious to know how you felt after the

> surgery and how soon were you able to go back to your normal

> activities? I am so glad I found this site, since this is a rare

> condition.

>

> > >

> > > Welcome Miya. We'd love to hear your story. How long before you

> > got a

> > > diagnosis? Did you have AVS? Where was your surgery? Anything

> > you'd like

> > > to tell us.

> > >

> > > Val

> >

>

>

>

[Guest guest]

Please give us your complete story. You cannot give us too many

details. They more we know the more we can help you and others here

and who will join us sooner or later.

May your pressure be low!



CE Grim MS, MD

High Blood Pressure Consulting

Clinical Professor of Medicine Medical College of Wisconsin

Board certified in Internal Med, Geriatrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

On Jul 15, 2008, at 8:40 AM, schryka wrote:

> Hello Miya and all,

>

> My name is Schryka I am 30 years old and Miya my story is similar to

> your's and since being diagnosed with this, I have had hives for some

> odd reason then all of sudden feel weird when I eat certain foods, I

> don't know if this has anything to do with it. But my surgery is in a

> couple of weeks and I have never had any type of surgery done before,

> so I am a little nervous. I am curious to know how you felt after the

> surgery and how soon were you able to go back to your normal

> activities? I am so glad I found this site, since this is a rare

> condition.

>

> > >

> > > Welcome Miya. We'd love to hear your story. How long before you

> > got a

> > > diagnosis? Did you have AVS? Where was your surgery? Anything

> > you'd like

> > > to tell us.

> > >

> > > Val

> >

>

>

>