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What Is The Interview / Determination Process For RNS?
Last month I had an initial interview with Mayo, MN for an RNS. Later this month, I’m going Friday through Monday for tests and consultation (staying in a hotel, but the tests have to be over 4 days) after a more in-depth phone interview on the Thursday before. Who has done this? What is next? More tests? A determination of whether or not I’ll have surgery? Are there more consults? What’s the process? All they say is, ‘this is next.’ I like to know where we are in this suitability process!
@A MyEpilepsyTeam Member, parking is so terrible there! It took my parents one hour just to find parking. The seeg cortical stimulation was crazy! Getting a little anxious, my doctor hasn't contacted me yet about what the best procedure might be to get my seizures under better control.
@A MyEpilepsyTeam Member that’s kind of where I am as well. The only meds ive ever been able to keep on for any length of time is Vimpat. I’ve used that for 7 years… everything else kind of round-robin’s in and I can use for 6-18 months and it stops being effective., or stops my kidneys… one gave me a stroke. I’m on 3 now and it’s getting to be erratic. I’ve had a VNS for 6 years. It was very, very effective at first! I didn’t have a seizure for almost 4 months! Then they started more, the VNS got turned up and turned up and turned up, and I’m still having seizures a couple times a month, along with those auras that say ‘LIE DOWN NOW!!!’ a few times a week. I am blessed to live with my son and daughter-in-law; they take excellent care of me, I know they would still have to with the RNS, but it wouldn’t be as hard for them.
How often do you still have a lot of seizures even with the RNS? Mine aren’t too bad mostly, less than a minutes, then just sleepy. The VNS has REALLY helped the aphasia afterwards, if nothing else. I’m not dealing with 24 hours of talking like a 3 year old and not remembering where the bathroom is lol! I really like the VNS for that reason. But 1-2 times a year I still wake up in the hospital with my kids telling me, ‘yeah, mom, we couldn’t get you out’ or the worst one… ‘mom, you were walking naked down the hallway to find the bathroom’ (we had company…yeah). I guess I’m really looking at the RNS as another step. I lived normally for 54 years… even 10 years later (I’m 64) it’s hard to get used to.
Thanks for all your info. 😊
Contact via internet your Epileptologist! Parking is horrible but I have someone drop me off and call them for pick up!
I asked my Nurse Practitioner about results. She told me she saw no results but will ask Epileptologist if has seen any results.
@A MyEpilepsyTeam Member, haha no worries. I hope you don’t ever have to do an SEEG, its an EEG but except you have brain surgery so that they put the wires inside your brain to actually record the seizures.
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