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.
Any Ideas On Which Surgery I Should Consider? My Doctor Suggested More RNS Or VNS. I'm Also Exploring Using CBD For My Epilepsy. Any Advice?
I've had 2 right temporal lobe lobectomies removing 13% of the 18% damaged brain of that area. Having that done has decreased seizure count approximately 90% stopped losing bowel movements, having… read more
I Have A RNS Question
Sorry , I just want to know what others think about my situation. I know the doctors want me to get it replaced , but I worry about getting another infection
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
I Had The RNS DEVICE SURGERY, July Of 2024. I’ve Had Epilepsy Since, I Was 4 Years Old . Is There Anyone Who Could Let Me Know How The RNS
I was diagnosed with epilepsy when I was very young. I took Dilantin and Phenobarbital , until I was 19. I was then put on tegretol and off Dilantin . Throughout my life I was put on many different seizure medications. None of the medications I took would even lesson my seizures. Throughout my life, I always took my pills and never stopped them. I got numerous EEG TESTS but, the information didn’t give my neurologists any new or different information concerning my seizures. After, my children… read more
@A MyEpilepsyTeam Member
I’ve had the RNS for 5 or 6 years. Just like you throughout my life, since I was a child, I was placed on every medication possible but had no luck. I had so many EEG’s… read more
Upcoming Seizure Alerts - The Future?
This isn't an advertisement as I will not mention the device or manufacturer but I'm part of clinical trials on a device designed to warn me, via my phone, if I am likely to be about to suffer a seizure. It works via bluetooth and an ongoing 2 channel EEG which measures your brain waves then sends them to a distant main frame. That main frame builds a model of what happens when you personally suffer an attack, then looks for those patterns in real time. If it flags one of them up, it sends a… read more
@A MyEpilepsyTeam Member The Seer study was done with RNS but it's about tracking multiple seizures long term and working out what time of day/night they are more likely to happen and asking the study… 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.
The epilepsy specialist I currently with has been wonderful with patient care as he is very thorough in wanting everything reviewed. We have always kept an open communication business relationship… read more
Has Anyone Had Any Procedures Done For Localized Left Frontal Seizures?
I had a Left Temporal Lobe brain surgery.