Surgery

[Guest guest]

Good notes Jeff. Thanks. We need to update Jeff's story. In

general BP may return to normal very quickly and I usually withhold

meds for several weeks as body readjusts. But depends on BP level

and other problems.

Peggy: remember that you may be able to avoid surgery if you can

DASH to the max or at least need many fewer meds. Also will slow the

need for meds after surgery or even avoid them but tell you team you

are DASHing.

Don't recall what your AVS showed.

CE Grim MD

On Aug 12, 2008, at 1:22 PM, datawrhsdoc wrote:

> Peggy,

>

> Left side is a good thing. The recovery is tends to be much easier

> and

> likelihood of a conversion to an open procedure is much lower on

> the left

> side as there is less tissue to the surgeon to get around to reach the

> adrenal gland.

>

> Prior to my left side surgery, I informed my company that I would

> be taking

> between 1 and 2 weeks off for recovery. I also let them know that

> if, for

> some unanticipated reason, the surgeon has to convert to a classic

> open

> procedure due to excessive bleeding or suspected malignancy, that

> I'd be out

> of commission for at least 5 – 6 weeks. With my age, my relatively

> good

> health and this being on the left side, I figured the likelihood of

> this

> converting to an open procedure to be very low.

>

> When I had my surgery, I spent an overnight in the hospital because

> they

> wanted me around for observation due to my sleep apnea. I went

> home the

> following morning. The strongest pain medication the day after my

> surgery

> was Tylenol Extra Strength! I started doing some work from home

> that day

> and felt ready to be back at work within 2 days. I ended up taking

> the

> remainder of the week off, as I didn't want to want to overdo it.

> I did

> avoid strenuous activities and work activities that involved a

> great deal of

> time on my feet for about a month as I didn't want to develop a

> hernia at

> the extract incision.

>

> It took about 2 or 3 months for my BP to fully normalize, though.

> The day

> after surgery, it was lower, but not yet well controlled. The

> problem at

> that point is that your body has to figure out how to manage your

> blood

> pressure since it hasn't had that job for quite a long time. It

> made use of

> the HTN drugs a major roller coaster for me.

>

> For example, before surgery, 4 or 5 different HTN drugs other than

> Spiro,

> couldn't do much to lower my blood pressure. A couple of days

> after surgery

> although my BP was still high, half the dosages were like a

> sledgehammer and

> dropped my BP so low that I would pass out. I kept going lower and

> lower on

> the drugs until I found the roller coaster ride so darn annoying

> that I

> stopped taking them altogether and just let my body figure out how

> to manage

> itself. I figured that was safer than falling asleep/passing out

> at the

> wheel of my car.

>

> In retrospect, perhaps if I stayed in the hospital a day or two, we

> could

> have figured out an initial cocktail. At your BP levels, that

> extra day or

> two may mbe helpful.

>

> -Jeff

>

> On Tue, Aug 12, 2008 at 10:43 AM, Peggy s

> <jrrtt88fan@...>wrote:

>

>> Hi Tim

>> Thanks for your story. I really appreciate it. My tumor is on my

>> left

>> side and is about 20 mm. I have had high b/p for 17 years (since

>> shortly

>> after the birth of my daughter ). I'm really not nervous about

>> having

>> surgery. I'm not positive thats the route they will be taking

>> until later

>> today when I see the surgeon. I hope it is though. I'm on 4 b/p

>> pills

>> (they took 2 away because they were causing more problems than

>> helping) and

>> I'm taking 8 10meg of potassium a day. I've researched that it I

>> guess its

>> a high dosage. My K is still low but out of the critical zone ...

>> for the

>> moment. My b/p is still running 170/107. It seems like as soon

>> as they get

>> it under control it goes out of control again. I know this might

>> not be a

>> complete fix and that I may have to still be on meds but hopefully

>> it will

>> be more controlled. It stinks because I'm 41 years old...what

>> will it be

>> like in 10 or 20 years if I don't do something now? And

>> thinking of the damage to my liver and kidneys that the

>> uncontrolled b/p

>> and medicine cocktails really bothers me. I am trying to lose

>> weight and

>> have been for a long time. Unfortunately, 3 of the 4 b/p meds

>> have the side

>> effect of " weight gain " . Its a vicious circle.

>>

>> I hope recovery is a snap. Although even if I feel better after

>> a few

>> days I plan on taking a couple of weeks off because when I had

>> surgery last

>> I over did it. oops. One thing though, when you had your

>> surgery, did they

>> put you in the hospital a day or so prior to get your b/p down?

>> They are

>> talking about doing that to me. I don't know if thats a usual

>> practice or

>> not.

>> Again thank you for your support and the support of everyone at

>> this group.

>> Peggy

>>

>>

>> Re: Surgery

>>

>> Hi Peggy

>> I had surgery two years ago on rt adrenal. Same problem with

>> Spiro. Have

>> you tried

>> Inspra? It worked really well for me, it is very expensive and you

>> may need

>> help getting it

>> approved. Do you have a nephrologist (kidney doc)? he/she should

>> be helping

>> you. FYI,

>> they found kidney stone during my scan so I got two operations for

>> the

>> price of one.

>>

>> The surgery is a snap, you may have a little post op pain due to

>> the gas

>> left in your body

>> cavity (they inflate you for laproscopic surgery).

>>

>> How long have you had high BP? Mine was for 10 years so I'm still

>> on two

>> meds. If I watch

>> my sodium and lose 15lbs my BP would be normal.

>>

>> If you want to chat further we can talk by phone.

>>

>> Good luck

>>

>> Tim

>>

>> Seattle

>>

>>

>>>

>>> Hi! I was taken to the ER a month or so ago with chest pain and I

>>> passed out. My potassium was 2.6 and b/p 175/115. After several

>>> tests the doc questions hyperaldosteronism. A MRI confirmed a tumor

>>> on my adrenal gland. Since then even after 8 potassium pills a day,

>>> my potassium has not gone over 3.0 and my b/p not under 144/100.

>>> (I've

>>> been on 6 b/p pills a day for months and it just doesn't go down).

>>> Anyway, I go to a surgeon next week for a consult. I have anxious

>>> now

>>> I'm nervous. Has anyone else had the surgery or anyone know of

>>> anyone

>>> who has had it? I've read a lot about it on the internet but I

>>> haven't actually spoke to anyone who has had it. Thanks for any wise

>>> words anyone can give me. I'm scared to have the surgery and if I

>>> don't I'm afraid it could be life threatening. Oh yeah, I was on the

>>> Spiro before I was diagnosed for my b/p but it did nothing to

>>> help me

>>> and when I went to the ER the docs took me off it because I was

>>> being

>>> overloaded on meds.

>>>

>>> Take care everyone!

>>> Peggy

>>>

>>

>>

[Guest guest]

Very likely the same thing on the other side.

CE Grim MD

On Aug 10, 2008, at 2:33 PM, gary chatten wrote:

> Hi Peggy

> Ive had the op, the op and recovery is fairly easy i wouldnt worry

> about that. My concern would be getting AVS done. If u dont u could

> have the op for nothing this condition can be in both adrenals and

> without avs u cannot be sure. Im in the uk and AVS was deemed not

> necassary, but i think it should be, i dont mean to worry u but its

> a precaution i wish i had taken as its looking like i have the

> hyperplasia. They told me from CT scan i hd a 3.5 cm tumor from

> pathology report after surgery i had several tumors in a

> hyperplasic gland so they cant be sure !!!!

>

> [hyperaldosteronism ] Re: Surgery

> >

> > Hi Peggy,

> >

> > The episode that you describe sounds exactly like what I had. I had

> > several episodes like it but this was the first time that an ER doc

> > actually alerted me to the seriosness of the low potassium. I

> started

> > looking for a new primary but it took about 6 months. My bp had been

> > under control but started creeping up. The new primary jumped to the

> > maxide as the cause of the low potassium but ordered a ct of my

> chest

> > as he does this with all seniors. There was the tumor! The doctor

> > didn't think it was serious but when I looked it up on the internet

> > you could have put my picture next to the description of symptoms of

> > primary aldosteronism. My bp kept going up and reached 200/100 at

> > it's highest point in spite of several bp meds that I tried. Like

> > you, my potassium was slightly low even on a maximum dose of

> > potassium. Spiro lowered my bp slightly but made me very sick and

> > raised my k too high and lowered my sodium too low. Arr was only a

> > little high but all of the symptoms remained and I could not get my

> > bp down. Finally, my endo ordered a salt loaded urine test and there

> > it was. About 4 weeks later I had a left adrenalectomy. I should

> > mention that prior to surgery, I had a complete heart work up. My

> > heart is in excellent condition but the doctor could see the

> > aldosterone in the heart.

> >

> > The surgery was a cake walk for me. I had no pain from the surgery

> > and the day after surgery I went home with no symptoms except

> > weakness for about a week. All my symptoms were gone and I had a lot

> > of them. I had about 10 really good months. I had to go back on bp

> > meds but my bp was under control. About a year ago, I started having

> > symptoms again. I have flushing and sweating - a lot. The pain has

> > become full blown neuropathy my k is slightl low and my arr is up to

> > 44.9. A ct didn't show a tumor on the right gland and my docs can't

> > give me any answers. I'm am trying to get an appointment in San

> > Francisco with an endo who has the right credentials. Also, they

> have

> > research programs for adrenal disease.

> >

> > I'm telling you all of this to let you know that the surgery is

> > serious but it can be very easy with the right surgeon. Knowing what

> > I know now, I would have gotten a second opinion before surgery but

> > it wouldn't have changed anything. I do not regret having the

> surgery

> > because I could not control the bp and it certainly helped the

> > symptoms. I still would not have had an AVS as it is far to

> > dangerous. With my symptoms, there was really only one choice. It

> > sounds to me like you also have only one choice. Spiro is not for

> > everyone and it can have some really bad side effects too. By the

> > way, I also tried Inspra and I had the same side effects that I had

> > with Sprio and it didn't even lower my bp.

> >

> > My advice to you is to find a good surgeon (one who has done the

> > surgery several times) and put yourself in his/her care. Think

> > positively and stop reading all of the bad stuff. Surgery could

> > totally cure you.

> >

> > Good Luck

> > Jan

> >

> >

> > >

> > > Hi! I was taken to the ER a month or so ago with chest pain and I

> > > passed out. My potassium was 2.6 and b/p 175/115. After several

> > > tests the doc questions hyperaldosteronism. A MRI confirmed a

> tumor

> > > on my adrenal gland. Since then even after 8 potassium pills a

> day,

> > > my potassium has not gone over 3.0 and my b/p not under 144/100.

> > (I've

> > > been on 6 b/p pills a day for months and it just doesn't go down).

> > > Anyway, I go to a surgeon next week for a consult. I have anxious

> > now

> > > I'm nervous. Has anyone else had the surgery or anyone know of

> > anyone

> > > who has had it? I've read a lot about it on the internet but I

> > > haven't actually spoke to anyone who has had it. Thanks for any

> > wise

> > > words anyone can give me. I'm scared to have the surgery and if I

> > > don't I'm afraid it could be life threatening. Oh yeah, I was on

> > the

> > > Spiro before I was diagnosed for my b/p but it did nothing to help

> > me

> > > and when I went to the ER the docs took me off it because I was

> > being

> > > overloaded on meds.

> > >

> > > Take care everyone!

> > > Peggy

> > >

> >

> >

[Guest guest]

Next step then is to try spiro IMHO.

CE Grim MD

On Aug 9, 2008, at 9:36 PM, Peggy s wrote:

> yes they did and thats why they decided to do the mri because it

> was a high ratio

>

May your pressure be low!

Clarence Grim BS, MS, MD

High Blood Pressure Consulting

Senior Consultant to Shared Care Research and Education Consulting, Inc.

Clarence Grim BS, MS, MD

High Blood Pressure Consulting

Senior Consultant to Shared Care Research and Education Consulting, Inc.

[Guest guest]

We always recommend AVS before surgery as well as a trial of spiro.

CE Grim MD

On Aug 9, 2008, at 7:48 PM, Peggy s wrote:

> Thank you Jan. This is exactly what I needed to hear. When I first

> found about it I was all for the surgery. Then I started

> questioning if it was necessary. With my symptoms I know I really

> don't have a choice. I've seen 3 doctors who all agree and see the

> surgeon on Tuesday. I hope she is able to get me in soon because I

> just want to feel better. I'm only 41 and the extremely high and

> uncontrolled b/p scares me and my k goes down so suddenly I'm

> afraid of passing out behind the wheel. The tumor is about an inch

> long. The docs say its more than likely not cancer which is a

> relief. I have found a lot of info about the surgery and syndrome

> but until you I have not been able to talk to anyone who has had

> the surgery.

>

> Again thank you.

>

> Peggy

>

> Re: Surgery

>

> Hi Peggy,

>

> The episode that you describe sounds exactly like what I had. I had

> several episodes like it but this was the first time that an ER doc

> actually alerted me to the seriosness of the low potassium. I started

> looking for a new primary but it took about 6 months. My bp had been

> under control but started creeping up. The new primary jumped to the

> maxide as the cause of the low potassium but ordered a ct of my chest

> as he does this with all seniors. There was the tumor! The doctor

> didn't think it was serious but when I looked it up on the internet

> you could have put my picture next to the description of symptoms of

> primary aldosteronism. My bp kept going up and reached 200/100 at

> it's highest point in spite of several bp meds that I tried. Like

> you, my potassium was slightly low even on a maximum dose of

> potassium. Spiro lowered my bp slightly but made me very sick and

> raised my k too high and lowered my sodium too low. Arr was only a

> little high but all of the symptoms remained and I could not get my

> bp down. Finally, my endo ordered a salt loaded urine test and there

> it was. About 4 weeks later I had a left adrenalectomy. I should

> mention that prior to surgery, I had a complete heart work up. My

> heart is in excellent condition but the doctor could see the

> aldosterone in the heart.

>

> The surgery was a cake walk for me. I had no pain from the surgery

> and the day after surgery I went home with no symptoms except

> weakness for about a week. All my symptoms were gone and I had a lot

> of them. I had about 10 really good months. I had to go back on bp

> meds but my bp was under control. About a year ago, I started having

> symptoms again. I have flushing and sweating - a lot. The pain has

> become full blown neuropathy my k is slightl low and my arr is up to

> 44.9. A ct didn't show a tumor on the right gland and my docs can't

> give me any answers. I'm am trying to get an appointment in San

> Francisco with an endo who has the right credentials. Also, they have

> research programs for adrenal disease.

>

> I'm telling you all of this to let you know that the surgery is

> serious but it can be very easy with the right surgeon. Knowing what

> I know now, I would have gotten a second opinion before surgery but

> it wouldn't have changed anything. I do not regret having the surgery

> because I could not control the bp and it certainly helped the

> symptoms. I still would not have had an AVS as it is far to

> dangerous. With my symptoms, there was really only one choice. It

> sounds to me like you also have only one choice. Spiro is not for

> everyone and it can have some really bad side effects too. By the

> way, I also tried Inspra and I had the same side effects that I had

> with Sprio and it didn't even lower my bp.

>

> My advice to you is to find a good surgeon (one who has done the

> surgery several times) and put yourself in his/her care. Think

> positively and stop reading all of the bad stuff. Surgery could

> totally cure you.

>

> Good Luck

> Jan

>

>

> >

> > Hi! I was taken to the ER a month or so ago with chest pain and I

> > passed out. My potassium was 2.6 and b/p 175/115. After several

> > tests the doc questions hyperaldosteronism. A MRI confirmed a tumor

> > on my adrenal gland. Since then even after 8 potassium pills a day,

> > my potassium has not gone over 3.0 and my b/p not under 144/100.

> (I've

> > been on 6 b/p pills a day for months and it just doesn't go down).

> > Anyway, I go to a surgeon next week for a consult. I have anxious

> now

> > I'm nervous. Has anyone else had the surgery or anyone know of

> anyone

> > who has had it? I've read a lot about it on the internet but I

> > haven't actually spoke to anyone who has had it. Thanks for any

> wise

> > words anyone can give me. I'm scared to have the surgery and if I

> > don't I'm afraid it could be life threatening. Oh yeah, I was on

> the

> > Spiro before I was diagnosed for my b/p but it did nothing to help

> me

> > and when I went to the ER the docs took me off it because I was

> being

> > overloaded on meds.

> >

> > Take care everyone!

> > Peggy

> >

>

>

[Guest guest]

Peggy, my prayers and best wishes are with you. Please, please come back

now and then and tell us how you're doing.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of jrrtt88fan

Hi Everyone! I am having my surgery to have my left adrenal gland

taken out on Wednesday the 10th.

[Guest guest]

Thanks for the update. It sounds to me that the gamble of surgery

will be worth it in your circumstances.

This is the approach that I would also recommend assuming you had an

AVS that pointed to which side should come out and I had documented

that you were DASHing to the max by doing 24 hr urines for Na and K.

Keep us posted.

Be certain you get a copy of a detailed pathology report for you and

your family and your future Drs.

If things go well and they get the source of your aldo you will feel

better quickly. Classically the K with peak a day or two after

sugery and BP will fall quickly-rarely to low levels. You may once

again be encouraged to eat salt-at least for awhile.

I dont know if we have your detailed story and perhaps when you are

recovered you could share it with us.

Best of luck.

May your pressure be low and your K normal.

CE Grim MD

On Sep 8, 2008, at 7:08 PM, jrrtt88fan wrote:

> Hi Everyone! I am having my surgery to have my left adrenal gland

> taken out on Wednesday the 10th. I have gotten several messages

> through the message board that spiro is the way to go. For me the

> meds are not working and I'm too young to be feeling like this. My K

> is still low and I'm on 12 pills a day now! The max is 16. I'm

> taking several b/p pills at the max dosages. I tried the spiro but it

> didn't agree with me and there was very little change in my K and b/p.

> Last week I found out the mass/tumor has grown more. My b/p has also

> increased even more and my K seems to keep going down even after

> adding more supplements. For these reasons I decided I am going to

> do the surgery. I know I will more than likely have to continue with

> a pill or two. I know its not a miracle cure but I have to try. I've

> talked to several doctors in addition to my doctors and they all

> agree. I'm not taking the surgery lightly or even think that it will

> cure me completely although that would be nice. All I want is to feel

> better. I'm scared but trying to be strong. So now I am asking that

> everyone who reads this will think of me and pray for me in my

> recovery and that I will feel better as I hope everyone is doing well

> with their treatments, whichever treatment they decided to do. My

> docs say every person is different therefore a treatment that works

> for one may not work for another. I'm tired of being a human guinea

> pig/lab rat. I've had K and b/p issues for years and was always

> told it was because my family have b/p issues. The thing is I've had

> them since I was 25 years old...my family members were well into their

> 60s and 70s. Anyway, thank you all for listening to me and God Bless

> you all!!

>

>

>

May your pressure be low!



CE Grim MS, MD

High Blood Pressure Consulting

Clinical Professor of Internal Medicine Medical and Cardiology

College of Wisconsin

Board certified in Internal Med, Geriatrics and Hypertension.

Interests:

1. Difficult to control high blood pressure.

2. The effect of recent evolutionary forces on high blood pressure

in human populations.

[Guest guest]

hi i had my surgery on the 10th and got out the 12th. i feel good

today other than just a little bit of tenderness. my doc says i can

go back to work whenever i feel up to it. i took pain meds last night

but nothing today. i felt much better after taking a shower and

getting the bandages off. my b/p has come down some but not as much

as i would like. i'm told sometimes it takes some time. my K has

returned to normal range. my biggest complaint is a headache. i cant

seem to get rid of it. well, i just wanted to give a quick update.

take care all!!

>

> > I don't want to pour cold water on the party but I was in hospital

> > a full week after left side laproscopic surgery. I was off work for

> > 4 months and the Doc was not happy about me going back then. My

> > employer had to agree a phased return over many weeks - to start

> > with just an hour or two one day a week building up to full time.

> >

> > Helen in Scotland

> >

> > Send instant messages to your online friends http://

> > uk.messenger.

> >

> >

[Guest guest]

Dont forget to get copy of complete path report

Sent from my iPhone

On Sep 13, 2008, at 10:25 AM, jrrtt88fan <jrrtt88fan@...> wrote:

> hi i had my surgery on the 10th and got out the 12th. i feel good

> today other than just a little bit of tenderness. my doc says i can

> go back to work whenever i feel up to it. i took pain meds last night

> but nothing today. i felt much better after taking a shower and

> getting the bandages off. my b/p has come down some but not as much

> as i would like. i'm told sometimes it takes some time. my K has

> returned to normal range. my biggest complaint is a headache. i cant

> seem to get rid of it. well, i just wanted to give a quick update.

> take care all!!

>

>

> >

> > > I don't want to pour cold water on the party but I was in hospital

> > > a full week after left side laproscopic surgery. I was off work

> for

> > > 4 months and the Doc was not happy about me going back then. My

> > > employer had to agree a phased return over many weeks - to start

> > > with just an hour or two one day a week building up to full time.

> > >

> > > Helen in Scotland

> > >

> > > Send instant messages to your online friends http://

> > > uk.messenger.

> > >

> > >

[Guest guest]

Special syringe for soft tissue anaesthesia?