Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Getting a sEEG

Wed, 04/29/2020 - 21:01
i'm getting an sEEG and i have no idea what to expect. I am 18 and female and I don't want to sound shallow but starting college with any kind of shaved head wasn't what i had in mind. I don't know how much they shave off, how much it hurts after, or if anyone except my family will even be able to come see me. I have left temporal lobe refractory epilepsy. I haven't driven in quite some time and i'm really hoping to have some kind of normal going into my freshman year of college. I'm scared for this procedure and all the unknowns. Again college is just around the corner and was hoping to have it be as normal as possible and a shaved head (even a partial one) wasn't what I had in mind. Does anyone have any answers or advice? My family is trying but aren't really too knowledgeable in things epilepsy related.

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Thu, 2020-04-30 - 07:53
Hi, Thank you for posting and we understand your concerns. It’s important to remember that you are not alone, and we are here to help support you. We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health . One of the most important things to help you live with epilepsy is to find a support network. The Epilepsy Foundation has many resources available that can help you find and build upon your support network. Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates , or contact our 24/7 Helpline:1-800-332-1000, contactus@efa.org, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources, epilepsy.com/helpline . It’s important that you express any concerns you all may have and talk with your doctors and review your personal goals and expectations.Your healthcare team will help guide you all through the proper evaluation and testing and can help determine what treatment options may be best for you. It’s great that you’re planning for school in advance. This may help to lessen your risks, improve safety & increase the chance of a successful college experience, both in and out of the classroom. For strategies, tips and resources for transitioning to college, visit:  https://www.epilepsy.com/article/2018/8/epilepsy-strategies-transitioning-collegeWe understand that your wanting to have some kind of “normal” going into your freshman year of college. We also understand it can be intimidating and a very personal decision to share about your epilepsy, however it can also be very beneficial for a number of reasons. https://www.epilepsy.com/learn/age-groups/youth/work-and-college/attending-college How much information you share is up to you and you may want to start by just telling someone at your college that you have epilepsy,describe your seizures and let them know the best first aid strategy. Talk with your friends about when it is necessary to call for emergency help & how to administer seizure first aid,here: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/first-aid-seizures-stay-safe-side . Review and update, (if necessary) your seizure action plan with your healthcare team and make sure it’s easily accessible. Seizure action plans are very helpful tools used to help those who are closest to you understand how to respond appropriately if you were to have a seizure and what constitutes as a seizure emergency for you. https://www.epilepsy.com/learn/managing-your-epilepsy/seizure-response-plans-101 

I had a brain surgery.They're

Submitted by Misjoey101 on Sat, 2020-06-27 - 01:45
I had a brain surgery.They're not going to shave off all of your hair. That was my first thought too. I went out and bought a bunch of hats before the operation. In all reality, they just shaved a line where they needed to cut. Maybe 1/2 inch wide line, shaped like a U on the side of my head. If you have hair long enough to reach your neck, it should cover your scar.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.