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Name: Scott
Age: 43
Diagnosed in: 1999
Treatments: Surgery, radiation, hormone replacement therapy, and Humatrope (human growth hormone)
Tumor Type: Meningioma
Notes: Tumor on brain stem and cavernous sinus. Current good health; has hearing loss in one ear (may be from radiation). Sees an endocrinologist re: hormone production. Has trigeminal neuralgia. Update 2009: Had a second craniotomy, doing well besides double vision (that Drs say will subside) and 100% hearing loss in right ear. May be getting stereotactic radiosurgery (Cyberknife).
Medications: Somatropin (human growth hormone), Androgel (testosterone), Synthroid (thyroid), and Hydrocortisone (cortisol)
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Name: Lauren
Age: 25
Diagnosed in: 1993
Treatments: 2 surgeries; still seeking more treatments for weakness on right side of body.
Tumor Type: Cavernous Hemangioma
Notes: Had 4 leg surgeries because of right sided weakness.
Medications:
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Name: Erin
Age: 30
Diagnosed in: 2003
Treatments: Surgery
Tumor Type: Cysts
Notes: Epidermoid cyst located in brain stem, symptoms included vertigo and dizziness. Surgery was long, but successful with total resection. Completed physical therapy and currently has 90% hearing loss in left ear. She is married and works full-time in marketing.
Medications: Decadron, Percacet, Oxycontin
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Name: Marc
Age: 33
Diagnosed in: 1996
Treatments: 2 surgeries, chemotherapy (procarbazine), radiation
Tumor Type: Ganglioneuroma
Notes: Tumor located in right frontal lobe. First diagnosis found tumor to be benign, recurrence three months later was malignant. Has had 2 surgeries, allergic to Dilantin and generic Tegretol (Carbamazepine). Has follow-up MRIs every 9 months and does not have any physical or cognitive changes. Doing great!
Medications: Tegretol
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Name: Kathy
Age: 66
Diagnosed in: 1986
Treatments: Surgeries in 1986, 1990, 1996; fractionated radiation in 1997, surgery for shunt placement 2006.
Tumor Type: Meningioma-Atypical/Malignant
Notes: Malignant meningioma in cerebellum. Has experience with headaches and imbalance. She is a retired RN (disabled, 1987). Update 2009: has hydrocephalus, headaches, and ataxia, a shunt was put in in 2006. Used to have MRI's because allergic to CT scan contrast, but now the magnetism of an MRI can damage the valve in the shunt so she is back to CT's (without contrast).
Medications:
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Name: Winnifred
Age: 57
Diagnosed in: 1998
Treatments: Surgery
Tumor Type: Oligodendroglioma
Notes: Tumor was in left temporal lobe. Had 2 grand mal seizures and had side effects from anti-seizure drugs. Now is symptom-free, enjoying an active life and working full time.
Medications: Took Depakote; allergic to Dilantin
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