Eleven years ago, my life changed in a way I could never have imagined. That day, I held my brain AVM report in one hand and the result of my secondary high school examination in the other. I had stood first in my school and had been selected for one of India’s top medical colleges with a scholarship. I was an 18-year-old boy with dreams of becoming a doctor. Then I looked at my father. His eyes were wet with tears. He hugged me tightly. It was the first time in my life that I had ever seen my father cry. A few days earlier, I had gone to coaching in Delhi, nearly 300 km away from home. Suddenly, I developed the most severe headache of my life. I could barely stand. I somehow made my way to the metro, then took a train back home. I was fortunate to have a mentor who genuinely cared about me. He advised my family to get my head scanned. That scan changed everything. I was diagnosed with a brain arteriovenous malformation (AVM). My father did not earn much at that time, but he somehow arranged the money for my treatment. I was prescribed levetiracetam and clobazam twice a day. My neurosurgeon explained the treatment options, including embolization and Gamma Knife radiosurgery. I took some time to decide. I chose Gamma Knife. I was told the success rate was around 97%. I remember thinking, “I can accept that much risk.” My father deposited the money at the hospital. I underwent DSA and then approximately 90 minutes of Gamma Knife treatment. For the next two years, things went well. Eventually, my surgeon told me that the AVM was no longer there. My father and my entire family were incredibly happy. For the first time, it felt like the nightmare was finally over.
But life had something else waiting for me.
I was involved in a road traffic accident. The accident injured the same side and the same lobe of my brain. I suffered multiple skull fractures along with subdural and epidural hematomas. I was unconscious for nine days. For nine days, my family lived with the fear that they might lose me. I barely survived. When I woke up, I could barely walk. The accident also ruptured the ligaments in my knee, fractured my clavicle and three ribs, and I was even coughing blood. A part of my skull was fractured so severely that I no longer have that portion of bone. Levetiracetam and clobazam continued. That 18-year-old boy is now 29. I have graduated in Life Sciences. I have tried to rebuild my life, piece by piece. I have survived things I never thought I would have to face. But there is still one question I don’t know how to answer:
What is actually happening inside my head now?
I have been taking these medicines for years, but I have not seen my neurologist/neurosurgeon in almost four years. I am scared. I am especially afraid of the thought of undergoing a 3D titanium cranioplasty. I don’t know whether I should continue these medicines, whether they can ever be stopped, or whether my epilepsy can actually be cured. Sometimes, I experience a strange sensation in my ankle. I have been told that this could be a seizure. I am sharing my story because I need guidance. If you know a neurologist, neurosurgeon, epileptologist, or someone who has experience with cases like mine, I would sincerely ask you:
Can epilepsy be cured after everything I have been through?
Can someone like me eventually come off anti-seizure medication?
What investigations should I undergo after being away from follow-up for four years?
And is there a safe way to evaluate the condition of my brain and skull before considering cranioplasty?
I am not asking anyone to diagnose me over the internet. I am simply asking for a direction. Eleven years ago, I was an 18-year-old boy standing between a dream and a diagnosis. Today, at 29, I am still here. And perhaps that is the most important thing of all. If you are a doctor who can guide me, or if you know someone who can, please reach out.
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I survived once because someone told my family, “Get his head scanned.” Maybe this time, someone can tell me what the next step should be.