Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: Jeanne, 65-74 Female (Patient) Published: March 06

I am 72 years old and I had a pheochromocytoma when I was 17 years old in 1959. I had high blood pressure which limited my normal activities as I would get dizzy with any exertion. I also had extreme sweating. A urinalysis showed sugar in my urine. My doctor thought I was diabetic and started me on insulin shots, but I did not respond properly. Fortunately the doctor knew he needed help with a diagnosis and sent me to a teaching hospital where they made the diagnosis. My right adrenal gland was removed and I had a blood clot in my left arm after surgery which had to be removed in another lengthy surgery. For those of you with pheochromocytoma now the methods for bringing you back to health are a lot more user friendly! Good luck to you all.

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Comment from: tanner'smom, 45-54 Female (Patient) Published: December 16

Over the past few years, I have had many "attacks". They begin in the morning when I would go to the bathroom for my bowel movement. I would get terribly nauseous and begin vomiting every 15 to 20 minutes, sweating so much I would slide around on the toilet seat! In November 2013, I had a terrible spell, had my husband call 911. My blood pressure was 210/160, my heart rate was jumping around like crazy. I was admitted and spent 5 days in the ICU. For 60 hours I sweated like I had a bucket of water pouring over my head. I had a "slight" heart attack while in the ICU. While running a scan for blood clots, they found a mass on my adrenal gland. I just got the results back today from my 2nd 24-hour urine test, and the results indicate a pheochromocytoma. Now I'm waiting for appointment with an endocrinologist. I have to admit I am pretty scared.

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Comment from: Jacque, 25-34 Female (Patient) Published: October 22

I'm 30, overweight, fat face neck and abdomen. I have had high blood pressure since I was 19. I was on propranolol (a beta blocker) since then and it just didn't seem to be working well. I went to my doctor and told him it needed to be adjusted so he added a water pill. A month later after starting to take the new medication I was lying in bed having a terrible migraine and heart palpitations. I went to the emergency room like so many times before and my blood pressure was something like 205/ 160 my pulse was racing and the emergency room doctors just kept telling me I was having a panic attack. After 12 hours in the emergency room they decided to admit me and call down a doctor to ok my being admitted. I have a family history of Von Hippel-Lindau (VHL) disease and had googled my symptoms for months. So the doctor they sent down was going over my chart with the nurse and I could hear them. I yelled out "I think I know what's wrong with me." They came in and asked what I thought it was and I told them about the VHL and said I think it's a pheochromocytoma. "I doubt that, it's so rare" said the doctor. Then she got called away to deliver someone's baby. That might have saved my life. Since she got called away they sent down her attending boss. I told her the same thing. She agreed the symptoms fit and admitted me and started running a barrage of tests. Blood, 24 hour urine, CT, MRI, MIBG, ultrasound, echo, you name it. A day or so later she came in and said "you were right! It's a pheochromocytoma!" I have probably had it for 10 years. It's rather large on my right adrenal. I'm scheduled for surgery on October 28th 2013, they are going to try and do it laparoscopically but it may need to be an open surgery due to size. I've never been so happy/vindicated to be told something really was wrong and I wasn't having a panic attack!!

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Comment from: Cathleen, 13-18 Female (Caregiver) Published: July 06

Yesterday, our 15-year-old daughter had the urine tests for pheochromocytoma. She has many of the symptoms. Over the past two years, she has seen many doctors with no answers or with the assumption that she has anxiety. Her worst bout was just a month ago. While my daughter was home with a headache, she complained of chest pain. Then, she said she had no feeling in her hands. Soon, her pulse skyrocketed, and she began to lose consciousness. We called 911. Her pulse and blood pressure were high. The ER doctors couldn't figure it out; they thought it was a panic attack. Her high blood pressure and pulse rate continued. Then, she had two more episodes in the hospital. After the episodes, she had no recollection of the experiences, and her general cognitive functions were that of a 4 year old. (Now, her memory is perfect except she does not recall a thing from the three-day ordeal in the hospital.) She also has had headaches for two years. We saw a great neurologist yesterday who is running a brain MRI and EEG. He also says that she has the symptoms of pheochromocytoma.

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