Re: PA at the VA, the Saga Continues

[Guest guest]

, I am reminded of the assistant IR who had done " too many to count " yet

didn't get my first AVS right. Perhaps the 6 that yours has done have all been

done correctly, and here's hoping that yours will be too!

>

> I finally caught up with the IR's assistant this afternoon, figured it was

time since AVS is scheuled for Feb 22nd. The conversation was much shorter than

I expected when I found out he has done 6 in the last 15 years and he's " the

most experienced in the North East! " Guess PA must still be rare here in the

North East!

>

[Guest guest]

Your experience was the first thing I thought of! The second thing I thought of

was NIH in Bethesda MD. And the third thing I did was send my PCP an e-mail

asking her to send my medical HX, list of meds and a copy of the ct-scans down

to land for study #NCT00005927. I think the odds of it being done correctly

just increased! ;>)

I then called the Chief of Medical Services and asked his secretary to set up a

meeting for me!

> >

> > I finally caught up with the IR's assistant this afternoon, figured it was

time since AVS is scheuled for Feb 22nd. The conversation was much shorter than

I expected when I found out he has done 6 in the last 15 years and he's " the

most experienced in the North East! " Guess PA must still be rare here in the

North East!

> >

>

[Guest guest]

If you can get into that study, that really does seem to be the way to go. I was

considering cashing out my 401K in order to do exactly that, had my second AVS

gone awry.

> > >

> > > I finally caught up with the IR's assistant this afternoon, figured it was

time since AVS is scheuled for Feb 22nd. The conversation was much shorter than

I expected when I found out he has done 6 in the last 15 years and he's " the

most experienced in the North East! " Guess PA must still be rare here in the

North East!

> > >

> >

>

[Guest guest]

I actually think I will save money! The VA's " free svc to vets " costs me $50

co-pay to see a specialist and when I add travel it costs me $192 at the VA.

R/T to Bethesda is $202 and they feed me for 10 days! (Plus I don't have to

stay awake and tell them where to poke me!) :>)

> > > >

> > > > I finally caught up with the IR's assistant this afternoon, figured it

was time since AVS is scheuled for Feb 22nd. The conversation was much shorter

than I expected when I found out he has done 6 in the last 15 years and he's

" the most experienced in the North East! " Guess PA must still be rare here in

the North East!

> > > >

> > >

> >

>

[Guest guest]

If they have only seen 6 in the last 15 years here in Vermont I bet you could

have field day! Let's see, if 10% = 6 that means only 60 Vets w/HTN in the lst

15 years - think it's the fresh mtn air in VT and NH? ;>)

> > >

> > > I finally caught up with the IR's assistant this afternoon,

> > figured it was time since AVS is scheuled for Feb 22nd. The

> > conversation was much shorter than I expected when I found out he

> > has done 6 in the last 15 years and he's " the most experienced in

> > the North East! " Guess PA must still be rare here in the North East!

> > >

> >

> >

>

[Guest guest]

, I remember how perplexing & long it seemed to take to find & schedule an

AVS. In retrospect, it feels like it was quick. You may recall the IR I went

to had done over 100, but didn't check my K before I left & I ended up in an ER

on my way home with a K crash. I hope it works out for you at NIH. ~Lucy

Please forgive brevity & typos

Sent from my droid

<jclark24p@...> wrote:

>I finally caught up with the IR's assistant this afternoon, figured it was time

since AVS is scheuled for Feb 22nd. The conversation was much shorter than I

expected when I found out he has done 6 in the last 15 years and he's " the most

experienced in the North East! " Guess PA must still be rare here in the North

East!

>

[Guest guest]

Thanks Lucy.

>

> >I finally caught up with the IR's assistant this afternoon, figured it was

time since AVS is scheuled for Feb 22nd. The conversation was much shorter than

I expected when I found out he has done 6 in the last 15 years and he's " the

most experienced in the North East! " Guess PA must still be rare here in the

North East!

> >

>

[Guest guest]

I have figured out the system, If you want to talk with the Chief of Endocrine

services simply request an audience with the Chief of Medical Services - his

boss! Doctors, Nurses and Patient Advocates can call him, e-mail him and paged

him and he won't answer but leave a message with the CMS's secretary and he will

call you within 2 hours!

He again assured me the IR was " the Best " . I told him I couldn't see how that

could be since he had only done 6 in 15 years! " He's real good at hitting the

vein! " I told him I understood that while hitting the vein was important I

understood it was a lot more complicated than that.

I asked him about withdrawal of meds and he said he usually uses 10 days, when

was I scheduled. I told him he needed to enter the " information age " and

realize everybody could search the protocol and every one I had seen used 2

weeks. He said again he found 10 days worked well. I responded, " all 6 of

them? "

I told him I felt the whole process had been botched starting back in 2005 when

they ignored the tumor on ct-scan, a lab report on 2/22/2007 that showed renin

at .1 and even a suggestion from the lab that PA was possible and Dxing it with

spironolactone w/o doing proper testing. I suggested I understood that should

be a last resort, not a first!

I then switched to testing to see if spiro was the appropriate med and suggested

that maybe a testosterone test might be appropriate prior to initiating

treatment w/spiro.

I asked him what he knew about how restricting CYP11B2 caused a " bleed over

effect " on CYP11B1 (Cortisol) causing an increase when it hit the brain of an

individual w/MDD where Cortisol was already impacted. His response, " I've got a

meeting to go to! " Want to bet he does little research. (And I didn't even

get to ask him if exposure to Agent Orange might impact testosterone!)

I had told him I had done enough studying to have a degree in treating PA. We

left as friends and him saying I deserved two! We also agreed that NIH was my

best option!

- 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 finally caught up with the IR's assistant this afternoon, figured it was

time since AVS is scheuled for Feb 22nd. The conversation was much shorter than

I expected when I found out he has done 6 in the last 15 years and he's " the

most experienced in the North East! " Guess PA must still be rare here in the

North East!

> > >

> >

>

[Guest guest]

Maybe your doctors haven't heard of " The Endocrine Society " ! Suggest you take

them a copy of their " Practice Guidelines " that is in our files so they will

know what the experts say! (Page 15, 3.2.Remarks, will explain the 3 different

protocols for an AVS)

The file is at: Final-Standalone-PA-Guideline.pdf

> > >

> > > I finally caught up with the IR's assistant this afternoon, figured it was

time since AVS is scheuled for Feb 22nd. The conversation was much shorter than

I expected when I found out he has done 6 in the last 15 years and he's " the

most experienced in the North East! " Guess PA must still be rare here in the

North East!

> > >

> >

>

[Guest guest]

Max, what is the 50% probability that you quote? BTW, the AVS costs the PTN

nothing at the VA or NIH so there is no $$$ incentive!

.....

>

> They do AVS only to get insurance money…then the doc flips a coin and tells

you the result because AVs has about 50% probability of correct outcome so why

they should waste time on time-consuming ACTH which is really a great headache

for radiologist as s/he would need assistance and time keeping …etc… during

AVS plus possible mislabeling of samples…you could flip the coin yourself and

save $25000 J

>

>

>

> Max.

>

>

>

> The radiologist who has done my AVS, said he had done 25. My endo said it's

NOTHING and recommended me to repeat it in the National Health Institute. My

nephrologist said everything was done correctly, even though AVS was done

without ACTH and I was all the time on 150 mg of eplerenone. I will attach the

results from my AVS and explanation of my nephrologist tomorrow.

>

> The nephrologist graduated from Harvard Medical School. He showed me the

protocol of AVS, written by Yung and others, where no mention of ACTH

was and going for 6 - 8 weeks without epler/sipro.

>

>

>

> When I asked him whether very high aldo/renin are bad and damaging even with

low sodium diet and epler, his answer was very interesting:

>

>

>

> " It depends on in which city a doctor lives. In NYC doctors say it's bad, in

all other cities, it's not! "

>

>

>

> Natalia

>

[Guest guest]

Dr. G. can probably explain that better than I.

> > > >

> > > > I finally caught up with the IR's assistant this afternoon, figured it

was time since AVS is scheuled for Feb 22nd. The conversation was much shorter

than I expected when I found out he has done 6 in the last 15 years and he's

" the most experienced in the North East! " Guess PA must still be rare here in

the North East!

> > > >

> > >

> >

>

[Guest guest]

Just so you know We had someone on here that had AVS done at NIH. Had to have it

done twice as they didn't get it write the first time.

Not sure but don't think he is in group any more. Does post a lot on NORD site

under the name BUS.

> > >

> > > >I finally caught up with the IR's assistant this afternoon, figured it

was time since AVS is scheuled for Feb 22nd. The conversation was much shorter

than I expected when I found out he has done 6 in the last 15 years and he's

" the most experienced in the North East! " Guess PA must still be rare here in

the North East!

> > > >

> > >

> >

>

[Guest guest]

There is nothing surprising about that, the best success ratio I have seen is

98% (2 out of 100 need a repeat). I've seen numbers as low as 46% where

inexperience came into play! If I remember 's story, he has an extra

vein on one side.

> > > >

> > > > >I finally caught up with the IR's assistant this afternoon, figured it

was time since AVS is scheuled for Feb 22nd. The conversation was much shorter

than I expected when I found out he has done 6 in the last 15 years and he's

" the most experienced in the North East! " Guess PA must still be rare here in

the North East!

> > > > >

> > > >

> > >

> >

>