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Adrenalectomy

jetter
0 Recommendations

I am considering an adrenalectomy for Conn's Syndrome. I'd like to know of experiences having an adrenalectomy and of those some time after the surgery.

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69 replies

MichaelBUS

Did you have an AVS? What were the results?

jetter

I haven't had the test yet. I had a very bad experience with a cardiac cath - vagus nerve reaction (nausea, fainting, low blood pressure) so I have been reluctant to proceed with the AVS. However, after reading others' experiences after the adrenalectomy I have decided to move forward. Did you have the surgery?

MichaelBUS

Not yet. My AVS is in two weeks. We will see what it finds before making that decision. My employment status will also have an effect. Although the surgery is free, the time off is not paid unless the NIH social worker can get me some cash for that period.

jetter

How is the surgery free?

MichaelBUS

It's part of a research and training protocol. NIH offers all of its services for free, although patients are responsible for lodging and travel expenses. Since I am local, there are no such expenses.

jetter

I wonder if this is available in San Antonio. We have a huge medical community here. How did you find out about it?

MichaelBUS

I found an endo by looking at my insurance company web page. After doing all the testing she could, she referred me to NIH, which I believe is only in Bethesda. Look for them online and check the protocol page, then take it to your endo and have them send the required information to NIH. If they accept you for a trial, you can come here for treatment, although this is kind of hard to do since it involves changing meds before testing and then waiting for AVS to be scheduled and surgery to be scheduled. 3 visits to DC would be expensive, but likely less expensive than an adrenalectomy if you don't have insurance that will pay for it.

Have you had a salt suppression test, so that you know that you have PA rather than essential HTN? Have you had a CT scan with contrast?

jetter

I do have insurance. I thought maybe I could find a research protocol through the Univ of TX at San Antonio and save some money. I guess I'll forget that idea. I have had hyperaldosterone, low potassium and high blood pressure for a few years and have been taking Inspra (potassium-sparing diuretic) prescribed by a nephrologist and blood pressure medications from a cardiologist. Just last year the tumor showed up on the adrenal gland but it was still controlled. Now is not so well controlled. My aldosterone is off the charts-not measureable, my potassium has been dipping dangerously low and my blood pressure is elevated even with additional medication. An endocrinologist has been testing for confirmation of my condition. My next step is the AVS and if just the one adrenal gland is causing the problems, an adrenalectomy. I was encouraged by the blog from flowerspy and larmar and have decided to move forward with the AVS, etc.

jetter

Did you have your AVS yet? Mine is scheduled for Sep 17.

KMKA

Hi Jetter,
Please, please, please keep us updated on your progress. I am headed down the same road and it would be so helpful to have some advanced warning about what is to come.
Best of luck to you with the AVS. I will be thinking of you and sending you good thoughts.
K.

jetter

To my surprise the hospital says the procedure will take 3 hours! I will be in the hospital all day. The nurse says I will feel like I've had a general anesthetic but I won't really (as when having a colonoscopy - I didn't know you are really awake but don't know it during a colonscopy). I'll let your know how it goes.

dizzybee

i had a bilateradrenalectomy in 2005 due to Cushing's disease; both my adrenals had already hemmoraghed -- it was done laproscopically, however, it was a very difficult surgery as they have to move your internal organs around to get to the adrenals; and they don't like to be moved! I was under general the surgery took about 6-8 hours (b/c one was also enlarged).

I felt as though I had been cut open, but once I got up and started moving (which was hard), it got better.

Good Luck to you!!!

FaithCures

u could very well have a hormone producing tumor somewhere in the body. u should look for this first such as cushings. it saved me from having to have the adrenalectomy. they found my tumor in my lung but only w/an octreotide scan. see www.cushings-help.com and only have the surgery by someone who is very expierienced. maybe md anderson, please see a CUSHINGS specific doctor before your adrenalectomy but dont wait. since having the tumor removed i am able to maintain pottassium and have gotten rid of the secondary illnesses caused by the hypercortisol. good luck.

jetter

I have a tumor on my left adrenal gland. My high blood pressure and low potassium were controlled for several years until several months ago. Now my aldosterone is too high to measure, potassium is staying low and high blood pressure is harder to control. The AVS will determine if the adrenal gland with the tumor is the only one producing aldosterone. If so, I'll have that adrenal gland removed.

FaithCures

good glad u r on top of things. check out the cushings site for someone who is expierienced w/adrenalectomy in your area. best of luck to u. sending some prayers keep us posted.

flowerspy

jetter,

I've had everything you have described and had an adrenalectomy in March for Conns. I started a blog to help others through the journey, maybe it can help:

http://hyperaldosteronism.blogspot.com/

It discusses all the tests and what to expect. Also Yahoo groups has a blog:http://health.groups.yahoo.com/group/hyperaldosteronism/

It sounds like you have Conns not Cushings..
Good luck-flower spy

flowerspy

Jetter,

Also- the AVS test can take longer- mine was 4 hours, as they sometimes have a hard time locating the right adrenal. Your total hospital stay will be about 6 hours, make sure you get a ride, you will be in no condition to drive.

FS

jetter

I read your blog. It was informative and inspiring. Are you still feeling good and think it was worth having the adrenalectomy?

uplandbill

With an aldosterone-producing adrenal tumor, chances are you'll know when it's time for adrenalectomy. Or so it is with me, anyway. I'm up to 30 K pills/day, always have high BP despite several antihypertensives, always have muscle cramps, sore joints, headaches and a downright angry mood. I'm up 10 times a night to pee, and am always thirsty. This has come on gradually since 2002. I'm set to have the right adrenal removed next week, and it can't happen soon enough, as far as I'm concerned.

jetter

Let me know how it goes for you. I am scheduled to see the surgeon next week.

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