Patient Comments: Pheochromocytoma - Symptoms and Signs

Question:What symptoms and signs did you experience with your pheochromocytoma?

Comment from: Holly K., 45-54 Female (Patient) Published: July 14

I am 50 years old and I am living with pheochromocytoma. I had a benign mass and my left adrenal gland removed early this year. I am trying to contact anyone with pheochromocytoma. My doctors don't have any suggestions on how to live without my left adrenal gland. I feel alone in my diagnosis because it is a rare disease.

Comment from: 43 woman survivor, 35-44 Female (Patient) Published: May 29

I had Pheo in the year of 2010 on the right adrenal gland. I thought I was having a stroke when I first felt the symptoms. I had a severe headache on the right side of my head that went down the side of my neck to my stomach. I thought I was going to throw up. I went to doctor and he sent me to a nerve specialist at first. He ordered an ultrasound which noted a 7 cm tumor, the size of a baseball. It was causing me to have heart palpitations and those weird spells where I would shake and feel headache pain and my stomach would feel nauseated. My family doctor sent me to a hormone specialist who diagnosed me with Pheochromacytoma and started the process. He was great. I felt better after surgery. It took me a little longer to get my energy back but I got through it okay.

Comment from: JigokuSenshi, 19-24 Male (Patient) Published: March 30

I had severe headaches and blood pressure problems for years. It started when I was very young and was not that bad for a long time, but we found out the cause at age 14. I went in to get checked up and had pneumonia, but my blood pressure was unusually high. No scans (MRI, CT scan, chemical, etc) other than a simple ultrasound found a golf sized tumor inside of my bladder. I had surgery and they were able to take out the main tumor, but they found out it was malignant. I'm 22 and again still suffering from horrible headaches. I got really sick recently and had to go to the hospital. My blood pressure was around 200 over 150 or something like that. It took them several days to get it under control. They wanted to do a ton of tests again, but I told them I only wanted to get another ultrasound. They again found another mass around my bladder area. They are not sure if it's a tumor yet, but it very well could be. Not sure if I will have to get surgery again. We are trying to figure stuff out. No doctors really now how to treat me or other patients with pheochromocytoma since it's so rare and doctors have no experience with it. Hope this helps some other people.

Comment from: rosie, 45-54 Female (Patient) Published: March 20

I am 54 years old had left adrenal gland removed 2005. I am now starting with high blood pressures and the same feelings as I did before. I did have a pheo. I take large doses of beta blocker, lasix, spirolactone norvasc, veramil, and clonidine path. Today bp is 197/104 I feel shaky and terrible. Well I think I have another pheo. Will call md. Wish me luck.

Comment from: pixie, Female (Caregiver) Published: November 16

My 23 year old daughter has just been diagnosed with a pheo after 3 years of feeling ill and telling her gp of her symptoms. After a routine kidney scan they decided to look higher up her body and found it near her main artery it isn't decided yet whether she can even have an op because of where it is. Bless her she is so ill and it's cancerous so we really don't know what's going to happen. I just wish it had been found sooner then maybe she wouldn't have to be in this horrid situation.

Comment from: glbillin, 45-54 Male (Caregiver) Published: October 11

My Husband has been having severe headaches with high blood pressure which spikes for no reason he has been told its anxiety, tension headaches and whatever else they can think of his quality of life has went from 100% - 0% in 3 1/2 years and he has had mri, mra, ct and a battery of other tests and not one doctor or specialist he has seen can tell us what is wrong with him they treat you like you don't know your own body when clearly there is something wrong is there any doctor out there that anyone knows of that can help! We live in Iowa and I am desperate to get him the help he needs now!

Comment from: james, 19-24 Male (Patient) Published: August 31

Hello I am a 19 year old male and I've been undergoing treatment for pheochromocytoma for 5 years. I have been on phenoxybenzamine and atenolol (to control blood pressure) and thalidomide and temozolomide (to stop the growth of the tumors), but also suppress the side effects of the pheo, such as high blood pressure and palpitations. I am determined to find a set procedure for going about treating a pheo for everyone. It is my assumption that it may be possible to use a cyberknife, which is an alternative surgery that uses pinpoint high dose radiation to rid the body of tumors. I am going to be scheduled for another pet scan soon and upon the results of that I will hopefully be referred to a cyber knife treatment center to test my theory. I will be posting the conclusion on this site and others. I hope this post will help somebody.

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Pheochromocytoma - Experience Question: Please describe your experience with pheochromocytoma.

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