The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

Sensory Seizures after brain cancer surgery

monica_larosa
monica_larosa CSN Member Posts: 1 *
edited June 2024 in Brain Cancer #1

my husband had a GBM almost kill him now 2.5 years ago. He did 7 weeks chemo/radiation, they resected 80% in the hospital the day he almost died, and 1 year of TMZ. It was on the right side of his brain only. His scans have all been normal since that terrible day thank God, but he is having these random episodes of numbness and tingling in his hand, then goes to his face, then his legs for about 20 minutes and then he's back to normal. The first time he had an episode was about a year ago. I thought he was having a seizure or stroke so he went to the ER. Everything turned out great, the ER doc said it could be a small seizure or random nerve misfiring because his brain is still healing etc and to see a neurologist. Our neurologist said it was something called a sensory seizure and said if it happens again he would take away his driver's license and he can't work again for 6 months. During the episodes, my husband maintains full awareness and can move freely when it's happening which makes me question why it's even considered a seizure…. I'm an RN and I have never learned or heard of this until now. I've heard other doctors say it sounds like paresthesia from chemo/radiation or nerve healing. Has anyone experienced this post-craniotomy/brain cancer? My husband went literally a year without driving or working after everything happened and it was soooo bad for him mentally…he is sooo happy to be back at work and he's getting the job he actually has always wanted now. We're just not sure what to do though with these episodes because of his safety and if they are really seizures, I'm concerned they are getting worse. I would love to tell his neurologist, but he would take everything away from my husband again which is so frustrating because he is not limited during them, confused, staring off, etc anything classified as what I know as a seizure.