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May 9, 2018 Latest post:
May 23, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Thank you, everyone for caring about me as I take this step. My epilepsy has been a hindrance for 20 years and hopefully this surgery will free me of that. Please pray for Dr. Englot and the staff in surgery that they perform masterfully as they can. Let us all rely on a Higher Power, including this opportunity that will help me as it can. Thank you again for support and love. ______
GOD IS GOOD!!!!
Mike's surgery is scheduled for May 9th at Vanderbilt University Medical Center. It will be performed by Dr. Dario Englot, begin ~12:30 CST and last 4 to 5 hours. Mike will spend the first night in ICU, followed by 3 or 4 days in the hospital. His convalescence period at home is only 30 to 45 days. Dr. Englot will perform the procedure (a selective right amygdalohippcampectomy), using a scope to remove the withered right hippocampus and damaged amygdala. There is a 50% chance this surgery will CURE Mike's epilepsy! At a minimum, the surgery will significantly reduce seizure occurrence, severity and impact; reduce the amount of medicine Mike takes; and substantially improve his quality of life. The surgery will prevent additional tissue from being damaged (by repetitive seizures); offers the possibility for Mike to partially regain lost shot term memory; and stabilize his emotions. All are very welcome outcomes!
Epilepsy is a condition that is linked to seizures. A seizure is defined as a sudden electrical discharge in the brain causing alterations in behavior, sensation or consciousness. A seizure is a single occurrence and is different from epilepsy, which is defined as two or more unprovoked seizures. In most brains, neuron interactions occur in a chaotic but balanced, orderly fashion. When multiple neurons misfire at the same time, muscle twitches/spasms and impaired consciousness occur. This is a seizure. The brain and body are affected in different ways depending on where the surplus electrical activity occurs and travels. Seizures that appear to begin everywhere in the brain are classified as generalized seizures. Seizures that begin in one location are classified as partial seizures. While Mike has experienced a full range of seizure types since onset at age 5, now most (if not all) of his seizures originate deep within the right temporal lobe (Complex partial seizures). He doesn't respond to questions and makes repetitive movements and sounds when he has a seizure. Mike has virtually no warning of an impending seizure and no memory of ever having had one. Mike can often surmise he's had a seizure when he regains consciousness because he is fatigued and confused (or wakes up in an ambulance or ER with no recollection of how he got there!). It often takes several hours and some sleep for him to function normally. About 70% of patients with seizures like Mike's are also diagnosed with mood disorders.
For 20+ years, we relied solely on medicine to control Mike's seizures. He was blessed to have a relatively unimpeded childhood. In his early twenties, seizure frequency increased. Despite being prescribing several different meds (each wth side effects), Mike's seizures have not been well controlled. A year ago, with the concurrence and support of his local neurologist, we sought better meds at Vanderbilt University Medical Center. Little did we know then the magnitude those actions would have on Mike's future. In November 2017, after extensive testing, we first learned surgery may be an option for Mike because most, if not all, of his seizures originate in the same area. More tests followed, and the doctor cohort reviewing his case unanimously recommended selective right amygdalohippocampectomy in February 2018. Mike "aged-out" of his existing health insurance in March. He obtained new coverage via the Health Care Marketplace, effective April1. The new carrier (BCBS of TN) is fully accepting the diagnosis and treatment plan. AMAZING!
This is our course in miracles. We are extremely grateful for your love and support as well as this opportunity. I'll keep you posted.
Finally on our way to Nashville! Everything has fallen into place and hopefully this great journey continues tomorrow.