My Decision: On March 16, 2009, I had an adrenalectomy to remove both the tumor and the adrenal gland due to Conn's. The main reason for this decision came down to blood pressure. My father died young-ish with complications due to high-blood pressure, I couldn't imagine a life like that. The percentage of curing hypertension through this operation ranges from 60-70%, depending on which medical journal you read or what doctor you talk to. It can seem risky, but most people I met who have had the procedure all had successful outcomes.
The surgical process was more than I expected. One good thing is that it's done laproscopically, sparing the waist of a large scar that would encircle it. I have 4 small incisions on my side and they will probably blend into my skin in a year or so. The process prior to surgery echoes the testing you take to diagnose Conn's in the first place; it's detailed and exhausting. Two weeks before surgery, you will feel like you have been tested for anything and everything under the sun. If after all the testing, all they find is the adrenal tumor, you can feel pretty confident your health will be in check for at least 5 years. Don't misread this; we all are getting older and other things can happen. But you are poked and prodded for at least a year solid to find out what type of tumor you have, and if there's something else wrong with you, there's a good chance they will find it.
Before: You are admitted. Blood work/Vitals are taken Pregnancy Test for women Surgeon comes in to explain procedure You will walk into the operating room I.V. for anesthesia The wait time is 45 minutes- hour before you get into operating room depending on the surgery schedule.
After: You will be in intensive care immediately following the surgery. I was hooked up to every machine I had ever seen on t.v., it was very intimidating. The pain was profuse, but Dilaudid is a just nurse call away. Sleep is almost impossible, the machines you are attached to are mainly what keep you up. You will be hooked up to a blood pressure monitor, 2 I.V.'s- one for fluids and one for pain medication, a cardiac monitor, and a catheter. You will also have leg circulation pumps to make sure you don't get blood clots. It's important to move your legs around to prevent clots.
The second day, your surgeon comes in and reads your vitals. My BP was dropping steadily, so they moved me to another floor. They also take me off most of the machines, and removed the catheter. Once I was in my room, I slept for what seemed to be an eternity. An immediate improvement I noticed that day was the absence of the awful 'brain fog'. For at least 2 years, I have felt like I wasn't here, like I was floating and stuck just under the radar cloud of human life--basically, caught in a fog. Feeling like this brought me down so low I became reclusive. Many Conn's sufferers state this as a major problem. I still get infuriated reading symptoms of Conn's from sites claiming the only real symptom is high blood pressure (i.e.- The Dartmouth/Hitchcock Medical Center). I'm here to say that is utter nonsense. Conn's patients suffer from so much more. To no longer feel brain-fog was a welcome change.
They released me on the third day even though I still felt like crap--welcome to U.S. Healthcare. I honestly don't feel I was ready but that's our system. Once I got home, it was rest, rest, rest and drugs, drugs, drugs. I had a very hard time climbing steps and was told not to (an impossibility in my house). You really need someone there to help you, so if you are alone, this is a time to call in the favors.
The pain started to ease up within a week. You will not be running to the bathroom as much and the dehydration is gone. If you are like me and get antsy quick, you'll want to move around. No steps for a week means what it says. I challenged this (of course) and paid for it with lots of pain. Take the time to rest, at least 2 weeks.
Immediate Noticeable changes: Changes in the remaining adrenal are noticeable within a few weeks. I started to get energy bursts within one and a half week. I can't begin to explain my euphoria over this. Another good, though odd, change was sweating-- I didn't sweat the last 2 years, and now I perspire quite easily. There is a now a normal frequency of nightly bathroom visits-- instead of 4-5 times, I'm back to my one nocturnal trip. The migraines are gone, helleujah. Major Bonus: I no longer take 5 medications, which were stopped immediately post-surgery. There are now new things like hormones kicking in which can be exciting. Overall, there is a renewed sense of well-being--and hope.
Overall Opinion: I am thrilled I had the opportunity to remove my adrenal tumor. After meeting others who are considering it, I can wholeheartedly say I recommend this surgery. I personally thank two women (Rose and Tracy) who helped point me in this right direction. The endless conversations I had with Rose were highly appreciated. She had Conn's, and had the worst symptoms I had ever heard of, including 5 visits to emergency rooms for arrythmia and low potassium. After her operation, she told me she felt 15 years younger, I now understand what she meant.
It's been a long road getting here, but there is an end-- and it is filled with the physical well-being Conn's robbed me of six years ago when it first attacked my right gland. Major surgery is never an easy decision nor is it easy to undergo. But if it's an option, I say look into it, ask others who have had it and weigh your thoughts. Hopefully this surgical recap will help any of you that have an aldosterone-producing adenoma and are on the fence.