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Is There Anyone Out There Who Has Had Their VNS Removed Who Would Be Willing To Share Their Experience ?

Is There Anyone Out There Who Has Had Their VNS Removed Who Would Be Willing To Share Their Experience ?

I am specifically interested in whether you had
1.. the whole wire removed including the clamps around the vagus nerve
2. The whole wire removed except 2 cm closest to the nerve
3. Just took the generator out but left the entire wire

My understanding is that if you leave the whole wire in but take the generator out, you can no longer have an MRI

Did you have any symptoms related to the wire remnant?
Did you have any complications?
Did it seem like an easy surgery?
Any advice?

Thanks!!

posted January 24
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I have had my VNS removed.
They removed the big piece that stuck out of my chest but they left the leads (wire) in my neck. Which I can only feel with my finger. I was still allowed to have MRIs with the VNS and after it was removed. They may have turned off the system, but it didn’t affect the wires. When I got the RNS is when they told me no more MRIs. So it was all pretty simple it was removed years ago and I can’t really even tell I had one. If there’s anything else you’d like to know just ask. Been there, done that.

posted January 24 (edited)
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