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A MyEpilepsyTeam Member asked a question 💭
Pittsburgh, PA

I need help how can I get a vns or something for my epilepsy I've had 2.resections both unsuccessful 2 seegs and now my neurologist doesn't think I could ever be seizure free and Everytime I ask about a vns or RNS he always tells me no we all recommend another surgery. How do I get one?

October 9, 2025
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A MyEpilepsyTeam Member

A vns doesn't work for everyone. That's something to talk to talk to your doctors about. Implants are not always the answer for everyone. If they tried one surgery and it wasn't successful maybe that is why That's why they are unsure of the other

October 21, 2025
A MyEpilepsyTeam Member

you had 2 brain resection surgery? i had hemispheretamy... they take out the seizure trigger spot. i can not get the rns or vns... cause of the missing brain. if you surgically remove something, it is greatly likely that you can not do rns or vns. but i may be wrong... it has been a decade or so

October 10, 2025
A MyEpilepsyTeam Member

I understand! I went to another Epileptologist and got 3 answers! The medications have been changed and I am better! I wish you the best!

October 9, 2025
A MyEpilepsyTeam Member

I had temporal lobe surgery in 1995, hoped that would work but didn't. When the discussion started about the VNS (installed in 2008) I had built quite a list for medications as none of them cooperated. My neurosurgeon and neurologist at the time both decided enough is enough, it's time to go VNS. After asking questions about the VNS to learn more about the device I agreed with the surgery. Best option I made as it has helped my epilepsy needs.

I also have a DBS, installed in 2011 and they both work very well together.

If you're unable to make progress with the current neurologist, I highly suggest seeking a neurologist that can help you. What you might want to consider is reaching out to your primary letting them know exactly what was said here that you are in need of a VNS and not making headway. Stating those type of comments to your primary kindly but straight forward should help you obtain a referral faster as your health is in serious need by a specialist that can be of benefit. I do wish you the very best in finding a specialist that can take care of your needs.

October 9, 2025 (edited)
A MyEpilepsyTeam Member

Please note this is my opinion.
1st, Get an appointment with a neurosurgeon. He/she will be the one who will give you their opinion and options for you . They will also tell you if there are other surgical options for you to help you, possibly seizure free.
2nd get rid of this, pardon my language, asshole neurologist. Did he or she actually say you can’t be fixed? if indeed, they didn’t learn, bedside manner in school, and how they even got to be a doctor much less a neurologist. is beyond me. I’m sorry for my anger, but I believe I feel it, as well as your frustration. I have a great neurologist at the University of Pennsylvania in Philadelphia.. prior I was at Emory University Hospital in Atlanta, Georgia.
I think that learning hospitals like teens are the best way to go. If you have one near you,, try finding an epilepsy neurosurgeon there.
3rd ask to speak to a nurse if your neurologist is not the only one. See if he or she can recommend a neurosurgeon for you and then look this person up online and see their credentials and if there are comments about this person read them.
Oh, and those nurses may be able to steer you to a different Neurology if you like the facility that you’re in.
I think I have given you more than enough suggestions. I think the most important are seeing a neurosurgeon and not making another single appointment with your neurologist if here she actually said you can’t be fixed. Lastly, there are many people on this site who may have the same epilepsy you have. I hope they respond to you and give you some good advice. Take care and don’t give up hope. I am having a therapy session shortly, so I’m not going to re-read this if there are any double words, double sentences, or I have said the thing over again that’s one of my deficits and I apologize.

October 9, 2025

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