RE: 11 weeks post surgery

[Guest guest]

Teri, thank you for sharing your story. I hope you continue to improve and

have a long, healthy life. Let us know how you're doing.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of terridelorenzo

I just passed the 11 week mark since my left adrenalectomy

[Guest guest]

Thanks for the update. I doubt that your surgeon has done hundreds of

Conn's surgeries.

If so he should publish such a series as I have never seen one by one

guy with so many surgeries.

He should also be able to give you some very good statistics on have

many have had their BP return. However is he is like most surgeons he

only seens the pts for several months and then never again.

I have seen exactly this problem in one ADx pt I recall.

This is the major reason I only recommend surgery if all else has

failed.

Be sure to get a copy of the pathology report for your and your

families records. Sometimes it runs in families.

Esp in Australia it seems.

Also guess your surgeon has never taken out a adrenal bump only to find

it was a lipoma and the other side had the smaller true Conn's tumor.

that pt ended up with both adrenals out.

On Mar 16, 2008, at 7:16 AM, terridelorenzo wrote:

> Hi all,

>

> Sorry for not writing sooner but I've still been diligently reading

> everyone's posts with much interest but have been " lazy " with posting

> my own story.

>

> I just passed the 11 week mark since my left adrenalectomy which was

> performed in Halifax, NS, Canada. From a Conn's perspective, I think

> I'm feeling great. My BP has returned to normal usually somewhere

> between 110/74 and 120/80 depending on where I have it taken. I

> haven't

> had a migraine since December which is unheard of for me. My

> potassium

> levels have also returned to normal. Some history on me. I am a 28

> year old female who was diagnosed with Conn's in September

> 2007,presenting with extremely low potassium, extremely high BP,

> muscle

> weakness, debilitating migraines and anxiousness. I was only on

> Labetolol, a fluid pill who's name escapes me at the moment and

> potassium supplements pre-surgery. Like some of you, I also did not

> have an AVS done. My doctor said it was unnecessary as he felt the CT

> revealed the 2 cm tumor on the left gland and the right adrenal did

> not

> look enlarged.

>

> While I'm feeling ok now, the road traveled wasn't as smooth as it

> sounds. I had the surgery on Dec 18th and was told it was a success.

> The evening of the surgery I was asked to stand up and walk around

> and

> d it was excrutiating. Since I'd never had surgery before I did not

> now if this was normal or not so I didn't complain probably as much

> as

> I should have. My BP was really low and I had a nurse at my side the

> whole night b/c I was shaking excessively, having cold sweats and my

> abdomen was bruised beyond recongnition and swollen. You'd think all

> those symptoms would have prompted a careful second look at me but

> that

> didn't seem to be the case. I was told my platelets were very low and

> this was not uncommon after surgery and that they'd monitor me every

> couple of hours which they did. I had so many needle marks I looked

> like a drug user. My arms from finger tips to shoulder on both sides

> also turned black and blue. All day on the 19th I continued to

> detoriorate. Platelets dropped all day long, abdomen got worse, I

> passed out during a " walk " I was told I should have been able to do

> no

> problem. Finally at 8pm that night, and thanks to a bossy nurse who

> wouldn't take no for an answer, the surgeon came back to see me

> (previosly his senior residents were keeping an " eye " on me. He took

> one look at me from the doorway and rushed me to the CT scan. 30 mins

> later they were running (and I mean literally running) me back to the

> OR. My husband and I were terrified. Everyone looked panicked and

> scared and they were running around like mad people hooking me up for

> a

> blood transfusion and knocking me out. The second surgery was about

> 3.5

> hours long I was told...double the first one.

>

> Turns out I had massive internal bleeding from the surgery. One of

> the

> adrenal arteries didn't seal off properly so I was bleeding

> internally

> for over 24 hours post initial surgery. The incisions also didn't

> stop

> bleeding apparently. My surgeon said he's done hundreds of these

> surgeries (he's been published on the topic of adrendal surgeries for

> Conn's, Cushings, etc...Dr. Jaap Bonjer)

> before and has never had to perform a second surgery due to this type

> of bleeding. He pretty much said this had to be some pre-existing

> condition on my part rather than surgical error on his team's part. I

> would have thought I would have known if I had a clotting disorder my

> whole life before this....but hey, what do I know? ARGH. I ended up

> in

> the hospital for about a week and had 5 units of blood pumped into me

> during the second surgery. The nurses told me I was lucky to be

> alive...they weren't sure I was going to make it. SCARY.

>

> Post surgery they've been running lots of blood tests. My platelets

> continue to be low (pre-surgery they were within normal ranges) and

> I've become very anemic. The only drugs I'm on now are iron

> supplements

> and synthroid for a pre-existing thyroid problem. For weeks after the

> surgery I was feeling faint and naucous all the time. Those symptoms

> appear to be going away somewhat but not entirely. The pathology

> report

> confirmed that the tumor was Conn's. I'm going to see a hemotologist

> at

> the end of the month to rule out an auto-immune problem of some sort.

> Has anyone else had this happen? I seem to have changed one set of

> problems for another at this point although I'm much happier with

> these

> problems than Conn's. My quality of life has improved 95% and I'm

> much

> more calm and happy than I've been in years. I definitely don't feel

> as

> anxious as I used to and I'm not going to the bathroom 5-6 times a

> night anymore either so the extra sleep is great!

>

> I'll keep you posted on any new developments but I wanted to share my

> story since I've found this group to be so supportive and inspiring.

> I

> wish you all continued health and happiness in 2008.

>

> ~Terri

>

>

May your pressure be low!

CE Grim BS, MS, MD

High Blood Pressure Consulting

Specializing in Difficult to Manage High Blood Pressure

Consult the following at for details

bloodpressureline

hyperaldosteronism