Hyperaldosteronism Support Group

Has anyone had their adrenal gland tumor removed? If so, what experiences did you have with the surgery and afterwards? What is it worth it?

I had my left adrenal gland removed 10/2006 but only after having AVS confirming the tumor on that adrenal was producing excess aldosterone and the other one was normal

Surgery was laparoscopic and very easy. My BP and serum potassium both normalized post op, Potassium right away and BP over a few months, no meds...

Unfortunately I unknowingly had a simmering Lyme infection which, once the adrenal was removed, my immune system went crazy and within a year I was sicker than every before in my life, it took over another year to find someone to help me

I was diagnosed with CFIDS in 1988...then they told me most of my symptoms were due to the hyperaldosteronism...they were severe but at the time there was no other answer

So overall, the surgery corrected the high BP and the potassium.

Thank you for replying. I had an AVS last week and am waiting for the results.

Hope things work out for you

How are you doing? I felt great after I had my adrenal gland removed. I was back to normal. The other adrenal gland takes over when you have one removed. I am now having problems with my remaining adrenal gland and may have to have it removed also. I will find out in a month when I go back to MD Anderson. Can't imagine what life will be like with no adrenal gland.

I had mine removed in 2006....normal BP without meds now and stable potassium levels. Surgery was a breeze.

BUT

I ended up getting severely ill one year later from a simmering Lyme infection I did not know I had.

The surgery went well, I had laparoscopic, was in the hospital 2 days, no complications. Had to eat a higher salt diet for a while to help the remaining adrenal regain function which is where I think things went wrong with the Lyme disease...

I had hypertension that couldn't be controlled for many years, then the potassium levels started dropping and those things were not recognized as a problem by the many physicians I saw.

I could not tolerate any medications...there are many things in my medical history that are probably interconnected and caused my body to break down, one of them having the unrecognized hyperaldosteronism for so long.

My tumor was proven to be the problem by having Adrenal Vein Sampling...I wouldn't have an adrenal removed unless I had that test proving the excess aldosterone was coming from that side....something to think about too.

Thank you for telling me that. I never heard of adrenal vein sampling, that sound really painful. I had to have my adrenal removed because of cancer. Now it's seems like my other adrenal gland tumor may have cancer also. It's a mess. I have a huge ovarian cyst as well and and pancreatic tumor, and a huge liver tumor. I can deal with the other stuff because I haven't had any severe symptoms, however, the adrenal mess is horrible. I'm a mellow person, but the adrenal tumor makes me get real hyper at times and I can get so angry that I could uproot trees literally. Then these panic attacks are just awful. After my adrenal gland was removed I felt great, not a single panic attack, very calm again, able to sleep at night, I felt like a normal person. Now it's starting all over again.

Do you have MENS? I had primary aldosteronism, not cancer however there is still a 25% chance of developing a problem in the other adrenal.

I know what you mean about the rage...it is awful and uncontrolable.

The endocrine system is a complicated thing that few doctors understand.

What is MENS? I never heard of it. I have Li-Fraumeni Syndrome which is genetic. Only 400 people have it in the U.S. It is a mutated P53 gene which prevents my body from fighting off cancer. I have had cancer several times in my life and it is an ongoing battle. I live very healthy which has probably prolonged my life but the eventual outcome is never a happy one. Having adrenal cancer is rare and I probably am not your "average" person on this forum, however, the information that I have recieved so far has been encouraging and helps me understand my symptoms better. I almost feel "normal". I have never heard of anyone having both adrenal glands removed and I am a bit terrified of the problems associated with it. This isn't something that I can talk to just anyone about. Most people don't even know where the adrenal gland is located, and since it's only a "gland" I shouldn't be acting like such a baby. Gland sounds like something so minor. People just don't understand how something that sounds so harmless can cause such havoc in ones life.

I have been through many bad health problems but was always able to stay emotionally healthy, however this thing with the adrenal gland makes me feel like I'm losing my mind and I feel awful and angry. Not my usual personality at all.

Multiple endocrine neoplasm syndrome....tumors on multiple endocrine glands...Usually hereditary.

The adrenal glands regulate almost every body function. But some people have glands that fail and are managed by taking the hormones that the adrenals make...they live fairly normal lives with that.

If adrenals stop functioning and no one catches it soon enough you die....tell your friends and family that. It has happened to some people after a serious infection, I've seen it happen in young previously healthy people.

I never heard of your condition but am sorry for all the problems you are having.

I am also sorry you are not getting support from those around you. You are dealing with a lot and need to enjoy every day to it's fullest.