After many phone calls and extensive research, my husband I a decided to consult with Byron Willis, M.D. of Arizona Neurology and Spine.
Because of the delicate location of the lesion, Dr. Willis told us the cavernous angioma could not be surgically removed without causing neurological damage. The only options for my case were either no treatment or radio surgery. The radio surgery (high intensity radiation) would act to cauterize the perimeter of the lesion, theoretically reducing the incidence of another bleed. I was told brain stem lesions have a propensity to re bleed, and that if my lesion bled again, it would most likely be fatal. As it was, the lesion was so large that it occupied the entire Pons of the brain.
Dr. Willis did put me on Dexamethasone--- a heavy-duty steroid-- to reduce the edema surrounding the lesion. I did feel significantly better going on the steroid. The "falling backwards" feeling stopped within a few doses of the medication.
Dr. Willis did advise us to get all of our biological children screened for this genetic disorder.
Dr. Willis also referred me to Dr. Kresl of Phoenix Cyber Knife.
Because of the delicate location of the lesion, Dr. Willis told us the cavernous angioma could not be surgically removed without causing neurological damage. The only options for my case were either no treatment or radio surgery. The radio surgery (high intensity radiation) would act to cauterize the perimeter of the lesion, theoretically reducing the incidence of another bleed. I was told brain stem lesions have a propensity to re bleed, and that if my lesion bled again, it would most likely be fatal. As it was, the lesion was so large that it occupied the entire Pons of the brain.
Dr. Willis did put me on Dexamethasone--- a heavy-duty steroid-- to reduce the edema surrounding the lesion. I did feel significantly better going on the steroid. The "falling backwards" feeling stopped within a few doses of the medication.
Dr. Willis did advise us to get all of our biological children screened for this genetic disorder.
Dr. Willis also referred me to Dr. Kresl of Phoenix Cyber Knife.
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