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Forum Name: Endocrinology Topics

Question: Pheochromocytoma - Surgeons w/ experience


 newpheo - Sun Nov 18, 2007 11:02 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"?
 Debbie Miller, RN - Wed Nov 21, 2007 1:18 pm

User avatar 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.

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