Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

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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Comment from: kbd6930, 35-44 Male (Patient) Published: February 02

I found out I had pheochromocytoma after 10 months. My first primary care physician couldn't understand why my heart rate was so high. To my frustration, he would always say, "I don't know?" When I also complained of my other symptom of headaches, I was referred to a neurologist. He took a CAT scan of my head, and he could not find anything and didn't know why this was happening. I was then referred to an ear, nose, and throat specialist. He also could not find what was going on. So finally, I changed my doctor and hospital to another primary care physician. At first, he was puzzled why my heart rate was so high. So finally he gave me an MRI of my entire body, and that's when they found the tumor. My adrenal gland was removed and my symptoms have gone away. Not all doctors are familiar with this disease, so if you have any of these symptoms, demand that your doctor give you an MRI of your entire body.

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Comment from: 19-24 Male (Patient) Published: February 02

I was diagnosed with pheochromocytoma as a 10-year-old boy. I had suffered agonizing headaches for a year or so previous to that, and I couldn't stop sweating. It was nearly too late for me, and I ended up in a coma for a short while and lost the use of the left side of my body for a while too. I was certainly unlucky as at the same time I suffered from encephalitis as well (swelling of the brain), and I was seriously ill. I had my kidney removed at 14, and that was the end of it. I was only the second person of that age to have the illness, which is why it took doctors so long to find out what was up. I nearly died. Anybody who thinks they may have this should go get it checked ASAP.

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Comment from: Doris, 45-54 Female (Patient) Published: February 02

I was just diagnosed with pheochromocytoma. It was discovered when I went into surgery to remove what the doctors thought was a fibroid tumor. Well, after seven hours of surgery, the doctors told me that I had this disease. I knew something was wrong with me. I am a marathon runner, and I am in pretty good shape, but I also had diabetes, heart palpatations, and very high blood pressure. For years the doctor told me that I was having panic attacks because my heart was fine. I was sooooo scared of dying. I haven't started treatment, but the surgeon did tell me that I still have cancer cells.

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Comment from: Matt, 25-34 Male (Patient) Published: February 02

In July of 2005, I was admitted into the ICU for extremely high blood pressure (250/170). I went in for a headache that wouldn't go away. After three years of testing, the last test we did was for pheochromocytoma. The levels were through the roof. However, it could not be found where they would normally find it. I have now have to do another scan to locate it and remove it. I have been on several different types of blood pressure medications, and none of them helped. I hope that once it is found and removed my blood pressure will go back to normal, and I can live a healthy life again.

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Comment from: Sheels, 45-54 Female (Patient) Published: November 24

I had back pain over my left kidney, for which I sought treatment. I found out I had pheochromocytoma, which was surgically removed two years ago. It was benign, and my pain was caused by the tumor being attached to tissue at my spinal column, which went away after surgery. I have had no symptoms since. It was very scary to be diagnosed with this condition, but in reality, it was not as worrying as I had let myself believe. It is very treatable.

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