Pheochromocytoma - Surgeons w/ experience

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newpheo
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Pheochromocytoma - Surgeons w/ experience

Postby newpheo » Sun Nov 18, 2007 10:02 am

Good Morning. I am a 33yr old male. I have gone thru many test since June 04 when I had a neurological phem resembling a stroke. I have met with multiple very talented neurologist, had multiple mri and mras. i have had tee exams as well as spinal tap for ms. Essentially all test kept leading to Abnormal Complex Migraines with Neurological phenoms. Unfortunately, I experienced another "vasal spasm (stroke?) about 45 days ago and was hospitalized yet again. In a reach, we completed a 24 hr urine test that came back pos. for pheochromocytoma and I just completed a week long mibr nuclear medicine scan. I know of no one in either side of my family to have experienced this. My research has tought me this is extremely rare. While I have alot of nervousness about my future with this I firmly believe with the proper steps this too will pass. My biggest frustration is that I cannot find anywhere a list of physicians who had completed the necessary surgery for pheo. I know it's rare, but I'm not interest in being a endocrinologist 1st. Can you advise me of where I my find a list of "experienced"?

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Debbie Miller, RN
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Postby Debbie Miller, RN » Wed Nov 21, 2007 12:18 pm

I would first contact a university with a college of medicine. They would be the most likely to know of someone qualified.

You could also go to the organization support home page at http://www.pheochromocytoma.org/sys-tmpl/door/
to get help from others who also suffer from this disorder.

Good luck.
The answers in online forums are for information only and are not intended to substitute for medical advice and care. Please see your personal health care provider for further evaluation of your individual case.

Debbie Miller, RN


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