Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Brain surgery insula

Hi! I was just in the emu for 2 weeks after doing an SEEG. We found out that the seizures are coming from the insula. Has anyone had their insula removed?? I’m terrified and I’ve decided I’m not going to do the surgery to remove anything unless my seizures get worse. At least we now know everything & they have the data so later on if needed we can continue with surgery.

Comments

Hi Tinajo88,  Thanks so much

Hi Tinajo88,  Thanks so much for posting and we understand your concerns. If you decide to have surgery, your epilepsy team will help prepare you and your family. Your healthcare team will also discuss what options are possible for you and will help guide you through the proper evaluation and testing, prior to making a decision about surgery.Working together with your epilepsy team is the key to understanding your epilepsy and the best treatment options for youIt's important that you continue to express any concerns you may have and talk with your doctor’s  about personal goals and expectations for epilepsy surgery.https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/go... is also important to remember when preparing for epilepsy surgery that every individual experience and path is different. Review our list of commonly asked questions about epilepsy surgery, learn more about the recovery process and common themes for people living with epilepsy& family members during their journey through epilepsy surgery, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgeryIt is also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsA..., it may be helpful to  connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. Or contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline  

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline