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VNS & RNS
Does anybody have a VNS and an RNS that work together? Im trying to get the RNS but at a Previous meeting my dr said they were unsure because i already have a VNS. The last time we spoke to her she said shes spoken to other dr’s and they do have patients who have both and that they work together somehow? My VNS doesnt help me thats why she told us that, i told her we can turn it off and she gave us that info. I’d like to know if there’s anyone on the app who has both and how they work for… read more
It's time to talk to your Dr about trying a new seizure med.
Has Anyone Had RNS (Responsive Neurostimulation)?
My partner is scheduled to have RNS surgery this month. I would appreciate people sharing their experience tremendously. Recovery time? Any difference in memory? Did seizures decrease?
@A MyEpilepsyTeam Member
I have had a few surgical EEG’s, where the doctors drilled holes in my head. The problem was I wouldn’t have any of my larger seizures for them to see so they were almost a… read more
Does Anyone Have Experience With An RNS Devise?
My adult daughter just had brain surgery (SEEG), where the doctor inserted 16 wire probes into her brain. She was in the hospital for about 2 weeks. She is home but, she is still having a tough time. She is always nauseous, has constant terrible headaches, and she sleep walks, which she never did before. She is depressed and can’t function or focus on anything for too long. The doctor said her brain has to “reboot “ which could take a couple of weeks. It now been about 3 weeks, she doesn’t seem… read more
How is your daughter feeling?
Is There Anything Else Could Be Done Besides Taking Medicine
I do take my meds for my condition, but I do my daily routine of prayer and bible study, I am a Catholic christian mix and I am not perfect and do sin, but that is my first above all that I go by, I… read more
For Those Of You Who Have Been Going To A Seizure Specialist What Has The Experience Been Like?
So, I've been seeing a regular neurologist for about 3 years now (partial seizures). I had a seizure last month and after that one my neurologist finally referred me to a seizure specialist, my appointment scheduled in October. It's going to be a full day event, I'm going to have a EEG done in the morning and I'll meet back with the doctor later on.
It's been mixed. Some listen and some are know-it-alls that have the "magic bullet" that cures everyone.
Currently Living In Galway My 15 Year Old Son Reece Has Epilepsy Medication Not Working
He's getting up to 14 seizures a night he's no quality of life he's down for vagus nerve simulation but I don't want him to get it because I've read too much stories about how it doesn't work and some horror stories there's limited options in ireland for epilepsy has anyone ever went overseas to UK or Scotland or anywhere without doctors referral an in go private with self referral for treatment I can't bear to c my beautiful son suffer anymore its not fair n him I'm willing to pay whatever I… read more
Jen did you see the link I posted for you Ireland epilepsy foundation etc?
For Those Who Have An RNS, How Often Did You Go For Adjustments After It Was First Implanted?
@A MyEpilepsyTeam Member
An RNS, or Neurostimulator, is a device surgically implanted in my head. It helps reduce seizures as well as record them so I can send my doctors seizure activity everyday… read more
Does Anyone Have Any Recommendations For Personal At Home EEG Devices ? If So Which Ones Are Best And What Information Do They Give You ?
I Was Suppose To Have One A Year Ago But I Rejected It. I Like Having Them At The Hospital, Less Work For Me.
Has Anyone Gotten RNS?
How has it effected your life?
@A MyEpilepsyTeam Member
I’ve always been one who has 1 or 2 seizures per month. Ever since I got the RNS I believe there have been more 1 seizure months. So I think it has reduced my seizures a… read more
Hey Everyone! Can Anyone Give Me Any Advice On Epilepsy Devices And How You Like Them??
I am still looking at my sons VNS device to see if it actually works only had it inserted in Dec 2023