Brain Tumors And Epilepsy

Question

Wondering how many others in the group had their epilepsy start after brain tumors.I was diagnosed with lung cancer wit metastases to the brain in 2019.I was given Gamma Knife radiation treatments to my brain tumors.At first everything was going well but about 5 months in some necrosis and edema started showing on my scans.The necrosis and edema kept getting worse and I had a small focal seizure I was put on steroids and more scans were ordered.A few months later after no other events I was advised to quit driving and start on Keppra. I quit driving but was hoping that if my edema necrosis were brought under control and I had no more events I could go back to driving which was my job.I knew even if the Keppra kept seizures at bay I would not be able to get a clean physical and be able to go back to work.The side effects on top of my cancer med side effects swayed my decision to not start on Keppra.3 Weeks later in August 2020 I had some focal seizures followed by a tonic clonic.I was put on Keppra and more steroids,a few months later I started an IV drug called Avastin which cuts off blood flow to tumors this eliminated virtually all the edema and necrosis. within a few months.My neurologist told me that the epilepsy would be with me forever.I was gradually switched from Keppra to lamictil and then 2 weeks ago had my second tonic clonic which was preceded by minute or two of auras.Sorry for the long post but I hope to hear from others with epilepsy caused by tumors and if I can help someone else that would be great!

A MyEpilepsyTeam Member · Accepted Answer

Hi Andrew! I was in a similar situation- I had a rare form of cancer called Langerhan's cell Histiocytosis. Diagnosed when I was 17 months old (1993). Had a tumor behind my left eye. Went through eight years of chemo, had multiple surgeries, and three rounds radiation. Went into remission when I was 9. Four years later, when I was 12, I started developing seizures and was diagnosed with epilepsy in April 2005.

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