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.
VNS removed but existing electrodes continue causing terrifying episodes
Fri, 06/28/2019 - 01:40My brother has recently had his VNS device removed which was first installed to help treat his epileptic seizures. The device which he lived with for years did not help his epilepsy in any way and would cause wild episodes of pain shooting throughout his body with episodes lasting up to 8 minutes. The sad news is that even after removal of this device these episodes still occur, he has been accused by doctors of faking these episodes but after being present for many of these them it is very clear that this uncontrollable attack of pain throughout the body is all too real. The electrodes attached to the vagal nerve were not removed for fear of silent ipsilateral vocal cord paresis. I do not have the best knowledge on this device and the procedure but i have a feeling that these episodes are still being caused due to the remaining electrodes attached to the nerve which i think malfunction and send strong stimulations throughout his body which is the cause of these horrifying episodes. This is just a broad synopsis of the situation and i can go into further detail in a future post. If anyone knows of anyone who has experienced the same or anyone who has knowledge on the subject please reach out!!
Hi Jacksonreeves98, Thank
Submitted by Anonymous on Fri, 2019-06-28 - 14:38
Hi Jacksonreeves98, Thank you for posting. We are sorry to hear that your brother is having these painful episodes. It’s important that you all are continuing to express your concerns with his healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf For information regarding second opinions, or assistance finding a specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist & https://www.epilepsy.com/affiliatesYou may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. For additional information regarding the VNS device please visit:https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vnshttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation/placement-programming-andhttps://www.epilepsy.com/sites/core/files/atoms/files/516VNS_VNS_FINAL.pdf