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Pheochromocytoma Support Group: Specializations
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Information About Our Site
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We concentrate our efforts in the special area of Pheochromocytoma, Paraganglioma, Multiple Endocrine Neoplasia Syndrome and what is new and current in research and medical practice. We can't recommend specific doctors or medical treatment. We do have message boards and other resources which list doctors and facilities that have been positive experiences for members. We can help with suggestions and information, but it is up to you and your physician to see that you get the proper healthcare that you need. Please see our contact page, the message boards and the members' site for information resources.
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PHEOCHROMOCYTOMA

Types of Pheochromocytoma

Pheochromocytoma is a rare tumor. The symptoms of pheochromocytoma can vary with each individual case, but the most common symptoms are severe hypertension, either sustained or episodic, pallor, headache, nausea, weight problems, sweating, palpitations, anxiety and sleeplessness. These are the most common symptoms reported. Since many other illnesses can also exhibit all or some of these symptoms, a proper diagnosis is needed. It is important to seek proper medical attention should you have any of these symptoms, especially when they happen suddenly.
Once a diagnosis of pheochromocytoma has been established and the tumor located, surgical removal of the tumor is standard treatment if possible. It is necessary to ask your surgeon how experienced he/she is with pheochromocytoma. Ask how many patients they have previously operated on for pheochromocytoma. An experienced surgeon will do no less than 3 of these types of surgeries per year.
In most cases, approximately 90%, once a pheochromocytoma is diagnosed and removed, the individual is cured, and will probably never have another "pheo" again. However, these individuals need to have followup examinations for the rest of their life.
Many cases of recurring pheos are often related to genetic disorders such as VHL and MEN syndromes.
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GENETIC CONDITIONS

MEN and VHL

Multiple Endocrine Neoplasia and Von Hippel Lindau are genetic conditions. They are known as MEN and VHL, respectively. As persons with these genetic conditions are at an increased risk for medical problems such as endocrine imbalances, kidney problems, infections and vision and motor impairments, it's very important for these people to receive regular medical attention.
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Information Used This Page

References

National Organization for Rare Disorders
NORD -
Pheochromocytoma
Society of Surgical Oncology; Doherty
GM, Olson JA, Frisella MM, Lairmore TC, Wells SA, Jr, Norton JA.
Lethality
of multiple endocrine neoplasia type 1. World J Surg 1998; 22:581-6.
Society of Surgical Oncology; Mulligan
LM, Eng C, Healey CS, Clayton D, Kwok JB, Gardner E, Ponder MA, Frilling
A, Jackson CE, Lehnert H et al.
Specific
mutations of the RET proto-oncogene are related to disease phenotype in MEN
2A and FMTC. Nature Genetics 1994;6:70-74.
National Organization for Rare Disorders
NORD -
Von
Hippel Lindau Disease
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