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.

Topic: Surgery and Devices

SEEG recovery time

06/2020 | 3 Comments

Looking for info on recovery from stereotactic EEG placement for surgical planning. Daughter will have this August and wondering about school planning...
Pediatric Epilepsy Hospitals - Florida

04/2020 | 2 Comments

My son's current neurologist is pushing for Miami's Children hospital, but we would like to pursue Nemour's or John Hopkins All Children to get...
Medications to VNS

02/2020 | 2 Comments

Hi all, Am from India (Tamilnadu). My baby is 2 years old who suffering from epilepsy from her age of 3 months old. Drs done Clinical Exome test and...
Deep Brain Stimulation

02/2020 | 2 Comments

Has anyone had this for their seizures? My 26 year old son is apparently a candidate for this but I'm not sure if it's worth it or not, as the numbers...
Seizure Detection Wearables, etc.

02/2020 | 2 Comments

My son is 5 and has had two tonic clonic seizures. We suspect it is due to a DNET. His seizures have been at night so we are, of course, scared of...
Amygdala Removal

02/2020 | 3 Comments

I had my left temporal amygdala removed 6 months ago and while I haven't had a seizure while still on my meds (!!!) I seem to have developed an...
Increase of seizures of years with VNS

02/2020 | 1 Comments

Hi guys! So let me tell you my husband's story - He was diagnosed with epilepsy in 2009. His neurologist at the time suggested that it may be because...
Neuropace aka RNS upcoming surgery

01/2020 | 10 Comments

My adult sister has an AVM deep in her left temporal lobe so removal surgery is too risky - if the surgery is not successful, she may lose ability to...
Has anyone had surgery?

12/2019 | 6 Comments

I have Temporal Lobe Epilepsy due to a tumor in my right temporal lobe... My surgeon is talking surgery. Has anyone else had this surgery before? Or...
VNS

11/2019 | 5 Comments

Hi, can anyone give me insights via their own experience with VNS surgery? Efficacy, side effects etc. Thank you
Intractable seizures

10/2019 | 4 Comments

Hello all I am 40. I have had seizures since adolescence. Started as auras and grand mals. Treated with different anticonvulsants. About 10 years ago...
Brain surgery insula

10/2019 | 1 Comments

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...
RNS device

10/2019 | 6 Comments

Hello. I'd love to hear from anyone who has the RNS implant device (from Neuropace), and how long it has taken to truly be effective. My young adult...
corpus callosotomy

09/2019 | 1 Comments

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...
My Epilepsy Has Been Cured!

09/2019 | 3 Comments

I use to have epilepsy and now it's been over 120 day without any seizures! This is because I recently had brain surgery as part of the SLATE study...

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