Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: Bensmah, 19-24 Male (Caregiver) Published: May 05

My 22-year-old son has been diagnosed for the third time with pheochromocytoma. His first diagnosis was at age 14 with one on right adrenal gland, a small one on the left adrenal and a golf-ball-size on his aorta just below his belly button (all benign). His right adrenal was taken, and his left was spared. Almost two years later his second occurrence happened. Once again, on his left adrenal, and it was spared again. Now he's facing surgery in late May for his left adrenal again, and they are going to take it, thus facing meds lifelong. He's had 24-hour urine screenings, MRIs, which showed no other pheochromocytomas other than on his left adrenal. His blood pressure right now is fine, but with his first diagnosis, he was at 185/125 with massive headaches and quite a bit of sweating. It's a scary, scary diagnosis. I hope we are done with this now with the absence of adrenals.

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Comment from: michellen28, 25-34 Female (Patient) Published: September 30

In April of 2007, I was diagnosed with a pheochromocytoma tumor. I found out that was the reason for my diabetes, high blood pressure, and rapid heart beat. I had never sweated so much in my life. My case is a little different. My adrenal glands are in my pelvic area, not above my kidneys. I was treated at the Cleveland Clinic and have been healthy since. The only thing I'm not happy with is the fact that I gained a lot of weight, but that I can work off. The fact that I'm finally healthy is the best news of all.

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Comment from: tia, 35-44 Female (Patient) Published: May 09

I think I have pheochromocytoma. My 24 hour urine test came back 847. I feel like a diabetic but I'm not.

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Comment from: Owens, 35-44 Male (Caregiver) Published: October 08

My husband was diagnosed with a pheochromocytoma when he went for an ultrasound of his gallbladder. The ultrasound showed tumors on his adrenal glands. One was active and the other was not. He had surgery and they removed a malignant tumor. He goes to the endocrinologist once a year now to keep check on the other tumor. We are thankful.

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Comment from: anatolia, 35-44 Female (Patient) Published: August 20

I was diagnosed with pheochromocytoma at seven months pregnant. My daughter survived and was born by C-section at 35 weeks. I then had a tumor the size of a grapefruit removed two weeks after her birth. I was told that the condition had metastasized and I now have a diseased lymph node.

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Comment from: Sharon Romano, 45-54 Female (Patient) Published: August 09

I am just telling my story about my mother she passed on in 2009 from pheochromocytoma no symptoms She just dropped dead - The doctors said she died from this rare pheochromocytoma.

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Comment from: patty, 65-74 Female (Patient) Published: July 02

I am a 65-year-old female. I was diagnosed with a malignant pheochromocytoma 8 years ago. I was hospitalized for 2 weeks after the tumor and a portion of my kidney were removed. I recently developed meningitis and encephalitis. I was feeling very weak. I now have another tumor on my right adrenal gland. I'm going to see a specialist and will undergo more treatment.

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Comment from: Alyssa12687, 19-24 Female (Patient) Published: March 31

I am a 21-year-old female who, a month ago, had a surgery on my heart that was supposed to help with tachycardia. Since January 13, my heart rate has been up to more than 200 beats per minute at least once a day. I get tired doing nothing, my head hurts, I get flushed at random times, and I feel as if I'm going to pass out. I had complications after surgery, and I'm back on heart medicine. Here's the weird part: Two days after getting out of the hospital, my doctor received a CT scan report from before my surgery, and it showed that I have an adrenal mass. It wasn't on my scan in December of 2008. I had all the blood tests to see if the mass was "active," but nothing came back. My doctor believes that I have pheochromocytoma, so I just did the 24 hour tests for that. I have a lot of the symptoms, so we are just waiting on the results. If this is the problem, then I had heart surgery for nothing.

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