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corpus callosotomy

Mon, 09/23/2019 - 19:09
I have to make a decision for my 8 year old son between the VNS and the corpus collosotomy as his seizures are uncontrolled by medications. He has atonic, absent, and general convulsive seizures. He has had as many as 400 drop attacks in a day. We have not had one day where he has been seizure free. I am looking for anyone that has chosen the corpus collosotomy as i am finding very little information on support networks for this type of surgery.

Comments

Hi kcorrao85, Thanks so much

Submitted by Anonymous on Tue, 2019-09-24 - 10:10
Hi kcorrao85, Thanks so much for posting, it sounds like you all have been through a lot. Your son’s epilepsy team will discuss what options are possible for him and will help guide you all through the proper evaluation and testing, prior to making a decision about surgery.It's important that you continue to express any concerns you may have and talk with his epilepsy team about personal goals and expectations for epilepsy surgery.https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectationsIt is also important to remember when preparing for epilepsy surgery that every child's 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/surgery/preparing-and-recovery-after-your-child’s-epilepsyTo learn more about the VNS device & Corpus Callosotomy, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-epilepsy-surgeryhttps://www.epilepsy.com/learn/professionals/diagnosis-treatment/surgery/corpus-callosotomy It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself as well. It can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-servicesThe Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsAdditionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline   

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