Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: Happy to be Alive, 55-64 Female (Patient) Published: May 11

I suffered with tremendous surges of adrenaline and severe heart palpitations for 10 years. My doctor thought I might have "pseudo hypoglycemia". Another doctor thought I was suffering from panic attacks. It went on for years and the episodes got stronger and more frequent. No doctor could tell me what was wrong. I experienced 20 minutes of blindness twice, and I was taken to an emergency room because I was having severe chest pain. My gastroenterologist suggested I might have gall stones, so he ordered an abdominal ultrasound, where my adrenal adenoma was incidentally detected. Immediately I went to the web and stayed up all night reading every article I could find and diagnosed myself with having a phaeo. I found a new doctor and pressed her to test me. She reluctantly sent me to an endocrinolist because phaeos being so rare, she didn't believe I could possibly have it because I have very low blood pressure. The endocrinologist thought I was crazy also. Then after she read my test reports, she told me to "prepare for surgery soon". My own sister, a psychiatrist, insisted I was having panic attacks. That was over a year ago. I chose a kidney/adrenal gland surgeon who specializes in laparoscopy. My surgery was complicated because my kidney was in a strange position - lying down instead of standing up. But I chose my surgeon well. My advice is always pick a specialist to do your surgery. And choose an anesthesiologist who has done many of these surgeries. I sometimes feel angry that I didn't change my doctor 10 years ago when he could not give me an answer to my symptoms. I suffered for so many years. I am grateful that I was finally diagnosed, even if it was by myself!

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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: 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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