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Jeff Jin - Stemmie:  Craniotomy & Gamma Knife

"I had grown tired of taking the 'wait and see' approach."

 

My first brain bleed was back in 1991 when I was a teenager. It was not properly diagnosed then as the one doctor I saw thought that I had Lyme's disease. I had numbness on the left side of my face, a hearing loss in that ear, and nausea. My symptoms subsided after a few days and I didn't know what had happened until the following year. I suffered a massive brain bleed in 1992 while I was at college and my life was saved at the Hospital of the University of Pennsylvania. My symptoms included Bells Palsy, double vision, hearing loss, memory loss, headaches, inability to stand or walk, vertigo, and frequent vomiting. My first MRI and the diagnosis of a cavernous angioma were almost a relief as now I knew what was happening. I had to undergo aggressive inpatient and outpatient rehabilitation for nearly a year after three brain surgeries including a craniotomy and a VP shunt insertion. I returned to my parents' home in Vermont to recover physically, mentally, and emotionally.   Though it was the most difficult struggle of my life, I returned to college in the fall of 1993 and resumed my life as a college student.

I had another bleed in 1995 but was thankful not to require another surgery at that time. Because my angioma was on my brainstem, conventional surgery twenty years ago could only be so aggressive; this lead to the angioma growing back. I bounced back fairly quickly and graduated from college in 1996 and then graduate school in 1998. In 2001 I suffered a new hemorrhage from my same old nemesis. Though physically Bells Palsy was (and to a certain degree still is)  the only symptom this time, emotionally this bleed hit me hard. My friends, family, and partner (now spouse) Frank gave me strength. Returning to work and looking at the struggles of my mental health clients, I put my own health concerns in perspective. By 2004 I had grown tired of taking the "wait and see" approach to my neurologic care and saw a different neurosurgeon who recommended stereotactic radiosurgery.  June 2014 marks 10 years since I had a gamma knife procedure and I have not endured a rebleed since 2001. I have some lingering issues with Bells Palsy and consequently have had numerous corneal injuries but I am grateful for where I am.

Perhaps I had been a self absorbed kid before my first hemorrhage, but my outlook on life - family - friends - experiences changed drastically. I became a social worker as I knew that I wanted to be able to help others in need. Despite the awful aspects of having a cavernous angioma, I can honestly say that my adult life has been shaped in so many beneficial ways from this journey. My hope is for everyone with an angioma to be able to find their inner strength too. We are a community to help each other help ourselves and educate everyone about our diagnosis in hopes of finding better treatment and ultimately a cure.