I'll be needing to make a decision between all of these types of surgeries soon enough. Already helping reading all of your comments. If you have any additional information, opinions or comments I'd be grateful to read more so! Thanks and hope you're all doing well!
did you get one yet? VNS worked minimal only for me. i would suggest RNS if your seizures come from a focal spot. i am considering RNS but brain surgery is scary.
@@popoju9 I just got tested to see if I can get the RNS... I'm hoping I can get it 😞 really sucks when this is your last option. I just hope it makes a difference and doesn't mess my brain up more.. I only have like 2 to 5 seizures a month sometimes I will go a month clean and burst into seizures.. i just know I can't stand not having my license... can't even shower without someone around.. really makes life hell. Hope you guys are getting better !
@@gocowboys51411 That sounds like my life completely. I'll know within the next few months if my OU docs are for RNS. But man it sounds creepy something being up in my skull! Hope everything is working out for you!
Our daughter has seizures that has not been able to be controlled with 6 different meds (some together others at different times) We've tried VNS for 2 years with minimal improvement. Now looking into RNS but reviews don't seem to promising online?? Would be interested in knowing more about the other forms of treatment that hasn't been approved in the US. I will say for those looking into VNS my daughter still has hoarseness when it is going off (every minute) which is hard for her to accept and understand due to her cognitive limitations
i got the VNS awhile back. that worked only minimally for me. i am currently considering brain surgery to remove the abnormal tissue tumor or getting the RNS. do you still have to take meds with the RNS?
Ben Lee have you done anything? RNS or brain surgery. I’ve had seizures for 29 years I had the brain surgery done and less seizures but still. They told me the problem was I get them from both temporal lobes and only one side can be touched. The vns I put it but nothing,I even had it removed. I’m now thinking of RNS but not to sure. Had brain surgery once then have this thing put in, I really don’t know not even if it’ll work.
I'll be needing to make a decision between all of these types of surgeries soon enough. Already helping reading all of your comments. If you have any additional information, opinions or comments I'd be grateful to read more so!
Thanks and hope you're all doing well!
Great info, thanks a lot. I am considering either the VNS or RNS right now.
did you get one yet? VNS worked minimal only for me. i would suggest RNS if your seizures come from a focal spot. i am considering RNS but brain surgery is scary.
@@popoju9 I just got tested to see if I can get the RNS... I'm hoping I can get it 😞 really sucks when this is your last option. I just hope it makes a difference and doesn't mess my brain up more.. I only have like 2 to 5 seizures a month sometimes I will go a month clean and burst into seizures.. i just know I can't stand not having my license... can't even shower without someone around.. really makes life hell. Hope you guys are getting better !
@@gocowboys51411 That sounds like my life completely. I'll know within the next few months if my OU docs are for RNS.
But man it sounds creepy something being up in my skull!
Hope everything is working out for you!
Our daughter has seizures that has not been able to be controlled with 6 different meds (some together others at different times) We've tried VNS for 2 years with minimal improvement. Now looking into RNS but reviews don't seem to promising online?? Would be interested in knowing more about the other forms of treatment that hasn't been approved in the US.
I will say for those looking into VNS my daughter still has hoarseness when it is going off (every minute) which is hard for her to accept and understand due to her cognitive limitations
Why do I get headaches with the RNS system
You may need to have your doctor change the settings or "turn it down." Same happened to me.
Vns does the same it's just the setting is to high.
I have neuropace for the brain in my opinion doesn't work neither do the pills
How long have since your surgery. I just had mine
How long have you had it, and were you told it would work right away
i got the VNS awhile back. that worked only minimally for me. i am currently considering brain surgery to remove the abnormal tissue tumor or getting the RNS. do you still have to take meds with the RNS?
bummer. i work with a buddy and his kid got the neuropace and it has worked beautifully for him.
Ben Lee have you done anything? RNS or brain surgery. I’ve had seizures for 29 years I had the brain surgery done and less seizures but still. They told me the problem was I get them from both temporal lobes and only one side can be touched. The vns I put it but nothing,I even had it removed. I’m now thinking of RNS but not to sure. Had brain surgery once then have this thing put in, I really don’t know not even if it’ll work.