Patient Comments: Pheochromocytoma - Experience

Please describe your experience with pheochromocytoma.

Comment from: new1, Published: June 03

I am a 27 year old female who has suffered from panic attacks since 7th grade. I have been to several doctors for a numbers of things, but at 16 I had an ultrasound done on my kidneys because of unbearable pain I was having. The doctors saw nothing and did nothing. Nobody took me seriously everyone thought I was making these things up. I started having awful mood swings, thought to be psycho, crazy and depressed and now I can't take 4 steps without pouring sweat and my blood pressure is severely high. Only last night on TLC I watched a show with a young mother inflicted with this illness. I saw myself in her and I'm glad. I think I've found an answer after almost 14 years.

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Comment from: Robyn, 45-54 Female (Patient) Published: June 03

In April I was sent to emergency with a BP reading of 240/130. Thank god I have a wonderful primary who sent me through a barrage of tests; blood levels, hormone levels, echocardiogram, ultrasounds, 24hr urinalysis and a CT scan. The CT scan found the tumor and the urinalysis and more blood tests confirmed it was a pheo. This past Tuesday I had the left adrenal gland and tumor removed. The pathology report will be back by the time I see the surgeon for my post-op check. I am keeping a positive attitude there. The overload of hormones, steroids and other things that were being released from the tumor will take time to dissipate. My surgeon has reassured me that within a short period of time I should be able to come off all medications. In response to the poster, you need to get on some specific meds to bring down your BP. You need to be on an Alpha blocker called Dibenzyline. It's very strong and is very specific in blocking the catecholamines that the tumors are producing. It was very effective for me and you must be on it for at least 7-10 days before your surgery. Once the alpha blocker is introduced you can the start taking a beta blocker such as Lisinopril to help with the elevated heart rate. Hope this is a help to you and any other patient still waiting for surgery.

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Comment from: 13-18 Male (Caregiver) Published: May 11

My son who is 19 now, but when he was told he had Pheo. He was 17. We found out when he suffered a major heart attack 2 days before Christmas. He was on life support for 4 days before they figured it out. We new he had high blood pressure, we had just had a Echocardiogram, and everything was fine. That really through them off, because they thought it was his heart. He was one hour away from open heart surgery when they figured it out. They saw the large mass, the size of a grapefruit on the adrenal gland. Once they new what we were dealing with it was treatable with meds. Until he was stronger to go get surgery to remove the tumor. Unfortunately it has done damage to the heart. It was Cancer, but right now he is fine going for scans every 3 months. They said it was very uncommon to have it come back. I read that ladies comment about her 21 year old son, and they kept returning. My son went to Iowa City for his treatment. I would love to share information with that women. Anyway my son is doing great he still complains of stomach pains (I worried). We almost lost him and I am so thankful we didn't. If they wouldn't have found it when they did he would of had heart surgery for nothing.

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Comment from: 19-24 Male (Caregiver) Published: May 11

I have read all the comments and feel for you that your diagnosis took so long! My 22 year old son was diagnosed with a pheo by the college campus physician only after an initial visit for complaints of headaches. When the physician took his blood pressure it was sky high, he was constantly sweating, had heart palpitations, and when he would drink from a cup you would of thought he had Parkinson's because he shook so bad. He had his right adrenal removed by a very experienced surgeon who performed a laparoscopic adrenalectomy within four months of the diagnosis. Removal has restored his blood pressure to normal and all symptoms have disappeared. He is to follow up every six months with a normetanephrine and metanephrine testing. Plus once a year he will have to have a CT scan. The surgeon explained this follow up will last five years. After five years he will continue to follow up every two-three years. Good luck to all of you. It can be a very scary situation! We just pray that another pheo does not develop!

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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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