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Community Forum

Topic: Surgery and Devices

Created By: montymeg | 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. Doc says 4-6 weeks for her to be ready to...

Created By: olesonfam22 | 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 further treatment for options for our...

Created By: Nainika02 | 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 found that she is having CPLX(-1) genetic prob...

Created By: ricknmort99 | 02/2020 | 1 Comment

Hi!

New here, and I couldn't find much information on helmets for falls or bangs during seizures. I wanted to see if anyone has any experience with the company 'Ribcap' -...

Created By: mgaraito1 | 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 aren't great and it would...

Created By: gouldfamily2012@gmail.com | 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 SUDEP.

I've looked into seizure...

Created By: Afederman | 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 unexpected side effect. I seem to be...

Created By: Krakendrick | 02/2020 | 1 Comment

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 he was given the K2 spice (not that he...

Created By: sunshinedaydream77 | 01/2020 | 1 Comment

I had a double craniotomy when I was 3 due to a severe head injury (TBI) open wound. An ALUMINUM MESH PLATE is on my right temportal lobe. I did not begin to have seizures until I was 15 . These...

Created By: ConcernedSister_5e22264cef15c | 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 speak or understand speech! She is going to...

Created By: piersodi | 12/2019 | 1 Comment

Hi, We have a 2yo that has focal seizures where he zones out, his lips turn blue, and his breathing is irregular. It is currently being treated with Keppra, Trileptal, and now Onfi. Our biggest...

Created By: Sommerisbell | 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 any type of resection to correct epilepsy? I...

VNS
Created By: Daveo | 11/2019 | 5 Comments

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

Created By: Criste | 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, I went into SE and was placed on a...

Created By: Tinajo88 | 10/2019 | 1 Comment

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...

Created By: Rdb | 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 son has had it for almost a year now. We...

Created By: PrinceCharming1984 | 09/2019 | 1 Comment

I always had petit-mal, never grand-mal. Has the TL-hippocampectomy on 08/09/2009.
Was removed off carbazamephine, Auras began, but not to seizure level.
However in the last year, the...

Created By: kcorrao85 | 09/2019 | 1 Comment

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....

Created By: Benjamin1 | 09/2019 | 1 Comment

Our son is 12 and will be having frontal lobe surgery in Nov. I was hoping to have him connect with someone that has experienced brain surgery that could yell us about their experience and...

Created By: Curtis_59fa6fc1eabfe | 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 (https://clinicaltrials.gov/ct2/show/...

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