
Pheochromocytoma Support Group
A pheochromocytoma is a tumor of the medulla of the adrenal glands originating in the chromaffin cells, which secretes excessive amounts of catecholamines, usually epinephrine and norepinephrine. Extra-adrenal paragangliomas are closely related, though less common, tumors that originate in the ganglia of the sympathetic nervous system and are named based upon the primary...
He immediately referred me to an endocrinologist. That same day my new endocrinologist called in two prescriptions for me before ever even seeing me (an alpha blocker and a beta blocker). The endo squeezed me in a day or two later, by which time the two drugs he had prescribed were working remarkably well. They had completely eliminated the episodes. Before starting the drugs I was having episodes a couple of times per day, and at least once each night, usually right when I laid down to go to bed (laying on my side put pressure on the tumor and squeezed out the adrenalin).
A couple of days later I had an MRI, which identified the tumor on my right adrenal gland. The surgery itself was about 3 weeks after I started the drug therapy. They kept moving me up on the schedule as other surgeries got cancelled. The surgeon did the surgery laproscopically. He made three small incisions, one just below my breast bone in the middle of my abdomen, another about three inches to the right and a little lower, and a third, larger one on my right side about halfway between my ribcage and the waistband of my pants.
I woke up a few hours later. They removed the tumor without any problems. The surgeon said it was necrotic, which to him indicated that it wasn't malignant, and that was later confirmed by another doctor. I was in the hospital for three more days. I was in a lot of pain. When they sent me home I was still in pain, but I could handle that. The worst thing was the bloated feeling. Actually, it wasn't just a feeling, my belly was swollen up like a balloon. I couldn't button my pants. I looked pregnant. After a day or two I called the doctor and he said it was normal. I was incredibly uncomfortable from the bloating. I tried Gas-X but it did no good. I actually wondered if sticking a long hypodermic needle into my belly would allow gas to escape and relieve the bloating. I never tried it, but the thought crossed my mind.
Anyway, after a week or so the bloating went away. The pain gradually faded. Three weeks later I was pretty much back to normal. Now, a little over a year later, my three scars are barely visible. I still take medicine for high BP. but I'm starting to think that it's unnecessary now because my BP on the medicine has been hovering around 105/65.
The day after the surgery, her body went into shock, due to the removal of the tumor. the body was reacting / searching for the hormones that no longer were there. Her organs began to shut down, her heart, her liver, her intestines, all took a hit. She was put into a medically induced coma to help her body appropriately respond to the medication and allow her heart rate, blood pressure, and liver enzymes return to normal. After four days, she was taken off the ventilator and slowly began to recover on her own.
Her hospital stay was just under 1 mth. She was on anti-seizure medication and high-blood pressure medicine for two months.
She has recovered well, however, she has been suffering from stomach cramps and diarrhea since the surgery(2-3x a day). She has tried numerous medications to no avail. The gastro dr feels she has developed irritable bowel syndrome, but i disagree. Is anyone else experiencing this problem? it is very frustrating for my child. She has to always be near a bathroom, and worries about leaving the house. This was never a problem, only post suregry.
Starter medicine Monday morning. surgery May 17.
I've never had acne before until about a year and a half ago. I sometimes get cramps on my toes. I get a lot of headaches. SOMETIMES palpitations and my HB has been always normal.
I don't know if it is because now i am aware that i have something there. but for the las 2 days i have had this feeling that you get when you are pregnant and your baby;s little foot is stock on your ribs..........
I am really scared.
P.S. English is NOT my first language so pardon my spelling!
Since the posting of that story I was told I had two new tumors forming. What looks to be a pulmonary chondroma in my left upper lung, and a new tumor on my right adrenal gland (my catecholamine levels are normal) I'm in the beginning stages of scheduling a surgery for a lobectomy for the lung tumor. We're still discussing on what to do about the adrenal tumor.
I'm very involved in patient advocacy, and would love to invite everyone who reads this into the pheoparatroopers organization. It's free! You can find their website at pheoparatroopers.org (the site that is hosting my story above) I also encourage everyone here to join in on the facebook support groups. You can look me up on fb @ Erin MacBean. There is a closed group for pheo support that provides a private place to post up pheo questions, concerns, and stories without the worry of the public reading your medical history, as well as some public pages designed to help connect and inform pheo para patients.
I look forward to see you there!