Re: partial AVS results

[Guest guest]

I apologize. Aldo is the test I got back so far.

My experience was they released me still bleeding and the nurse told me it was normal "seepage". When my sister brought me home, she made sure I was ok and went on her way. I could see the pressure bandage was bloody so I put a washcloth on top of it. I was still groggy and laid flat on my back on the sofa and passed out for 12 hrs. When I woke up, I was soaked in blood. I could wring out the washcloth. I threw up and I was drenched in sweat. I laid back down and applied pressure 5 min. on and 5 off and 5 on. I took my bp and it was 211/132. I took my emergency clonidine and got it down quickly. I got the bleeding stopped and called the hospital. The nurse called me 4 times that day checking on me. A radiologist friend told me that the radiologist doing the procedure probably knicked an artery. My bp was fine throughout the procedure. I just get a sick feeling that nothing was done correctly and it was all a waste of time and I've been sick ever since. He jabbed something on my left side 3x that made me yell out during the procedure. He supposedly was experienced doing this yet none of the staff had ever heard of it. That should have told me something. My doctor ordered the tests yet I don't know what all was ordered since he was primarily testing me for a pheo. Those results haven't come back....only the aldo which was elevated.

Debi

[Guest guest]

Debi,

What were they measuring here? I'd have to dig my

AVS report out but I know that after ACTH injection my

aldo and cortisol readings were elevated in the

thousands. I must have missed it, why was your AVS

nightmarish? I know others here have also had

problems with AVS but mine took less than an hour and

was virtually painless - before, during and after. It

was back to business as usual the next day for me.

a

--- debithoughts <moonium@...> wrote:

> I went to the doctor today to get results of the

> (nightmarish) AVS I

> had done. The only results back from the mayo so far

> were as follows:

>

> Blood-lower IVC 5.7 ng/dl (1-21 ng/dl)

> Blood-left adrenal 55 ng/dl H (1-21 ng/dl)

>

> That's it so far! My 1.2 cm nodule is on my right

> adrenal, not my

> left. I have no idea what happened the right gland

> results. My doctor

> called the mayo while I was there and left a

> message. He even said he

> wonders if they got the blood mixed up and this is

> for the right

> gland. I have no idea what these levels mean. One is

> normal and the

> other isn't. I had a flu shot while I was there too.

> I know he also

> tested for catacholamines since my urine levels were

> elevated for

> normetanephrine, metanephrine and total

> metanephrines. I don't even

> know if any of them know what they're doing. Should

> I go see my

> endocrinolgist? or my cardiologist? Is this

> elevation dangerous?

>

> Anyone having had an AVS, is it normal for your

> kidneys to still hurt

> after a week?

>

> thanks for your help,

> Debi in Knoxville

>

>

>

>

>

[Guest guest]

Hi Debbi:

Who is the doctor you saw at Mayo?

I had my AVS done in January at Mayo with Dr. son in the morning. The results were in the endocrinologist's office by my next day afternoon appointment. Everything went quite well and I didn't have any pain after the AVS. In fact this was my 2nd one as I had to have one done at UCSF that took much longer and longer recovery and wrong results. The doctor failed to get the blood test from either gland at UCSF.

The results below dont say anything about what these are. Aldosterone, or Cortisol measurements? Results should show the cortisol level in IVC, left adrenal and right adrenal glands. Cortisol levels from each of the adrenal gland must be 20 to 30 times higher than the IVC. If these are the measurements for the cortisol levels then your left gland samples were done correctly. However you need more numbers to identify exactly whats going on. The gland with the tumor may not necessarily be the gland that produces too much aldosterone. Thats why they need to do the AVS and take samples of both glands to make sure which gland is the corprit and not go by cat scans.

Good Luck

Farah

On 9/29/06, debithoughts <moonium@...> wrote:

I went to the doctor today to get results of the (nightmarish) AVS Ihad done. The only results back from the mayo so far were as follows:

Blood-lower IVC 5.7 ng/dl (1-21 ng/dl)Blood-left adrenal 55 ng/dl H (1-21 ng/dl)That's it so far! My 1.2 cm nodule is on my right adrenal, not myleft. I have no idea what happened the right gland results. My doctor

called the mayo while I was there and left a message. He even said hewonders if they got the blood mixed up and this is for the rightgland. I have no idea what these levels mean. One is normal and theother isn't. I had a flu shot while I was there too. I know he also

tested for catacholamines since my urine levels were elevated fornormetanephrine, metanephrine and total metanephrines. I don't evenknow if any of them know what they're doing. Should I go see myendocrinolgist? or my cardiologist? Is this elevation dangerous?

Anyone having had an AVS, is it normal for your kidneys to still hurtafter a week?thanks for your help,Debi in Knoxville

[Guest guest]

Debbi:That is horrible experience you went through. When I was there in January they told me that all AVS's procedures are only done by dr. son alone and no other doctor. I wonder if he has retired since or what happened. Do you know who the doctor was? Have your doctor contact Dr. Young at Mayo clinic. He is the one who has done research with Dr. son on hundreds of patients. Dr. Young is the Dr. Grim of Mayo Clinic and has many research papers using Dr. Grim's theory. I didn't see him unfortunately and only found out of him when I was there and already seen the doctor that saw me. Dr. the doctor I saw told me he had shown my test results to Dr. Young and consulted with him prior and after my AVS. Thats how I learned of him.

Take Care,

Farah

On 9/29/06, moonium@... <moonium@...> wrote:

I apologize. Aldo is the test I got back so far.

My experience was they released me still bleeding and the nurse told me it was normal " seepage " . When my sister brought me home, she made sure I was ok and went on her way. I could see the pressure bandage was bloody so I put a washcloth on top of it. I was still groggy and laid flat on my back on the sofa and passed out for 12 hrs. When I woke up, I was soaked in blood. I could wring out the washcloth. I threw up and I was drenched in sweat. I laid back down and applied pressure 5 min. on and 5 off and 5 on. I took my bp and it was 211/132. I took my emergency clonidine and got it down quickly. I got the bleeding stopped and called the hospital. The nurse called me 4 times that day checking on me. A radiologist friend told me that the radiologist doing the procedure probably knicked an artery. My bp was fine throughout the procedure. I just get a sick feeling that nothing was done correctly and it was all a waste of time and I've been sick ever since. He jabbed something on my left side 3x that made me yell out during the procedure. He supposedly was experienced doing this yet none of the staff had ever heard of it. That should have told me something. My doctor ordered the tests yet I don't know what all was ordered since he was primarily testing me for a pheo. Those results haven't come back....only the aldo which was elevated.

Debi

[Guest guest]

I did not go to the Mayo. My samples were shipped to Mayo Rochester.

Debi

[Guest guest]

It was done by interventional radiology at a local Knoxville Hospital.

Debi

[Guest guest]

Sounds like they need to re-name the dept " Invasive &

point-close-to-target-as-you-can Radiology. " I could do without

someone nicking my arteries, thanks very much.

Dave

On Sep 30, 2006, at 8:18 PM, moonium@... wrote:

> It was done by interventional radiology at a local Knoxville Hospital.

>  

> Debi

>

[Guest guest]

Oh wow, this is offle. These guys calling themselves doctors.

I wish all people who have to go through any AVS's get some advise here before doing anything. By now we have quite a few people who have tried to do an AVS with radiologists who are not capable and ended up either getting injured or not get the correct samples.

So sorry Debi you had such a horrible experiece. I would make sure to write a complaint letter to the American Medical Board about that radiologist.

Farah

On 9/30/06, moonium@... <moonium@...> wrote:

I did not go to the Mayo. My samples were shipped to Mayo Rochester.

Debi

[Guest guest]

ita,

AVS should is not an awful or painful experience

when done by a competent interventional radiologist

who is experienced in the procedure. How many had

your radiologist performed before doing yours?

a

--- meling333 <meling333@...> wrote:

>

> Debi

> I been wondering about how you were doing, AVS is a

> awfull experience. I know just how awful. I was

> screaming from pain as well and the whole thing was

> shut down and a complete failure. I could not get

> out of bed for a week and the pain was awfull. I

> would rather be operated on for some samples than

> ever go through AVS again. I found out yesterday I

> have a high Catachomine, its noreprinephrine and the

> shot of ACTH put me through the roof. I saw flashing

> lights for 3 nits after AVS with headaches from

> hell. To bad I was not on CCBs and ACEs woud have

> been helpfull. I am getting some next week. It took

> weeks to feel better after AVS. Then some have it

> done and are fine. Hopefully next week you will know

> which side is the problem. Glad you made it. I am

> still sore from AVS on 7/22 on the right side this

> will take a year to go away.

> ita

>

>

> >

> > I apologize. Aldo is the test I got back so far.

> >

> > My experience was they released me still bleeding

> and the nurse told me it

> > was normal " seepage " . When my sister brought me

> home, she made sure I was ok

> > and went on her way. I could see the pressure

> bandage was bloody so I put a

> > washcloth on top of it. I was still groggy and

> laid flat on my back on the sofa

> > and passed out for 12 hrs. When I woke up, I was

> soaked in blood. I could

> > wring out the washcloth. I threw up and I was

> drenched in sweat. I laid back

> > down and applied pressure 5 min. on and 5 off and

> 5 on. I took my bp and it was

> > 211/132. I took my emergency clonidine and got it

> down quickly. I got the

> > bleeding stopped and called the hospital. The

> nurse called me 4 times that day

> > checking on me. A radiologist friend told me that

> the radiologist doing the

> > procedure probably knicked an artery. My bp was

> fine throughout the procedure.

> > I just get a sick feeling that nothing was done

> correctly and it was all a

> > waste of time and I've been sick ever since. He

> jabbed something on my left

> > side 3x that made me yell out during the

> procedure. He supposedly was

> > experienced doing this yet none of the staff had

> ever heard of it. That should have

> > told me something. My doctor ordered the tests

> yet I don't know what all was

> > ordered since he was primarily testing me for a

> pheo. Those results haven't come

> > back....only the aldo which was elevated.

> >

> > Debi

> >

>

>

>

>

>

>

[Guest guest]

a

I probably wont see a competent radiologist as I plan on staying the hell away

from them, when it comes to AVS. I am scared to death now.The radiologist

completed a AVS right before it was my turn. The Radiologist said He would need

a cat scan before ever atempting it again.

HOO HUM to little too late.

I have been through 8 Endocrinologists since 01 and

4 in the last year not one of them could help me till Dr. Grim he is #9 I am

going to be seeing his recomendation in San

Francisco. I am reading a text book, Basic Clinical Endocrinology I am designing

my own labs and a FNP writes them up out here in the sticks I have found many

over the hill hormones this way. Aparently there really is no one in Sacramento

even the Professor at UCD in Sac who wrote the chapter in my book,

(Endocrinology Hypertension) has sent me on down to san francisco to the same

dr. ita

AVS should is not an awful or painful experience

when done by a competent

interventional radiologist

who is experienced in the procedure. How many had

> your radiologist performed before doing yours?

a

[Guest guest]

Have you given us your AVS numbers??

May your pressure be low!

C.E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

[Guest guest]

I had the AVS in August, took no sedation during it

and had no discomfort except for a slight " twinge "

when the catheter was moved to the upper IVC. There

was no bleeding or bruising afterward. I did stay

overnight because I also had a renal angiogram after

the procedure, I did have minor " tract " oozing after

that. There was no residual pain from the procedure.

Nothing was noticable when the Acthrel was injected

for the stimulation part of the test.

My results came back slowly, over a one week period,

as all the tests, except the cortisol, had to be sent

out of the facility, but my test was perfect according

to my endocrinologist and surgeon (this was confirmed

by Dr Grim). The test results showed lateralization

to the left adrenal which happens to be the side the

adenoma is on. My surgery was scheduled for Oct 11

but has since been rescheduled for Oct 25th.

I guess I was lucky to have a skilled radiologist who

happens to work in a small institution.

Pre stimulation :

Aldosterone Cortisol A/C Catecholamine

L adrenal 1354.9 243.3 5.6 21503

R adrenal 97.9 291.0 0.3 29142

L renal 63.5 24.4 <341

R renal 17.9 22.7 <309

IVC above 37.9 26.5 1.4 <340

IVC below 62.1 27.6 2.3 <236

Peripheral 24 26 0.9

Post Stimulation:

Aldosterone Cortisol A/C Catecholamine

L adrenal 2950 1002.6 2.7 18847

R adrenal 705.4 1419.8 0.4 24558

L renal 53.3 25.0 306

R renal 51.3 40.4 367

IVC above 17.1 26.5 0.6 <216

IVC below 47.2 26.5 1.8 <270

__________________________________________________

[Guest guest]

My endocrinologist consulted with Dr Young at the Mayo

Clinic to be certain that surgery was recommended.

He reviewed my AVS results and my history and stated

that I was a case of Classic Conn's syndrome. I have

one of the articles he wrote concerning

Hyperaldosteronism. He highly recommended the surgery.

Again, from reading the posts here, even though I

didn't get a proper diagnosis for almost 14 years,

once I found a local doc who listened to me and would

fight my HMO to order tests he felt were

necessary,things progressed rapidly to where I am

looking at the possibility of a cure. I guess I am

luckier than some.

I know the hypertension may remain a problem but to be

able to have a normal electrolyte balance without the

necessity of medication and to feel " alive " and have

some energy for a change after the past two years of

he--.

Now I just have to hope that the surgery goes well and

put my trust in the surgeon and the endocrinologist

for post op care. The local primary/nephrologist that

I found three short months ago has recently left the

area much to many patients dismay. Not quite sure who

locally I am going to use as a primary since I had

already gone to two other practices and all my

symptoms were ignored.

The practitioner before the nephrologist even had the

nerve to disagree with the diagnosis of Conn's

syndrome after proven by all the testing and confirmed

by the endo, Dr Young and the surgeon. Unfortunately

that is the thought process of many of the physicians

in my area, if they don't know about it, it doesn't

exist.

__________________________________________________

[Guest guest]

--The original post formated the results terribly, trying to send

again so they are readable

- In hyperaldosteronism , shotzie <shotzie@...>

wrote:

I>

> Pre stimulation :

> Aldosterone Cortisol A/C Catecholamine

> L adrenal 1354.9 243.3 5.6 21503

> R adrenal 97.9 291.0 0.3 29142

> L renal 63.5 24.4 -- <341

> R renal 17.9 22.7 -- <309

> IVC above 37.9 26.5 1.4 <340

> IVC below 62.1 27.6 2.3 <236

> Peripheral 24 26 0.9

>

> Post Stimulation:

> Aldosterone Cortisol A/C Catecholamine

> L adrenal 2950 1002.6 2.7 18847

> R adrenal 705.4 1419.8 0.4 24558

> L renal 53.3 25.0 -- 306

> R renal 51.3 40.4 -- 367

> IVC above 17.1 26.5 0.6 <216

> IVC below 47.2 26.5 1.8 <270

>

> __________________________________________________

>

[Guest guest]

In a message dated 9/29/06 6:50:51 PM, moonium@... writes:

Should I go see my

endocrinolgist? or my cardiologist? Is this elevation dangerous?

You need an expert in adreanl HTN>

May your pressure be low!

C.E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

[Guest guest]

In a message dated 9/29/06 6:50:51 PM, moonium@... writes:

Blood-lower IVC 5.7 ng/dl (1-21 ng/dl) This is below the adrenal glands and is normal

Blood-left adrenal 55 ng/dl H (1-21 ng/dl) This is no high for an adrenal sample but need cortisol to tell where it is from. Did they do ACTH?

May your pressure be low!

C.E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.