Question for those who have the VNS implant

[UsedAndAbused]

I had my VNS implanted a while back, and everything from the surgery has healed. However, around and under the scar on my chest there is a near constant stinging. Has anyone else experienced this? From what I understand once a scar heals there should be no such pain. I told my neurologist, and she prescribed Lidocaine cream to see if that helped, but it's doing nothing. I'm guessing it can't get through the scar, but it doesn't help the stinging around the scar either. Anyway, she can give me no explanation for this stinging, but I would assume it's related to the VNS. Any thoughts? I would be lying if I said I weren't a little worried. I feel like I'm walking around in the dark here. Web searches turned up nothing either.

 

[valeriedl]

I've had a VNS since 2007 and had the battery replaced in 2013, I never had any problems with it stinging.

At first every time it went off or was adjusted there would be a stinging, if that's the right word to describe it, in my neck until I got used to it.

I hope someone is able to give you some answers about it.

 

[UsedAndAbused]

Thanks for the quick response. This is like a constant bee sting on my chest. I didn't think this was a normal "side effect" of the surgery or device. She brushes it off every time I mention it though. I doubt if she would do so if she were experiencing it. I mentioned it to my general practitioner too, but she always responds with "that's something you need to talk to your neurologist about". Her and my neurologist are close friends who both work at the university hospital/clinic here. So I'm going in circles.

 

[valeriedl]

I just love it when one dr, your general practitioner for example, tells you that you should ask another dr, your neuro for example, about it then your neuro tells you that you should ask the dr who you already asked about it but told you to ask them!

Is your neuro the one who did the actual VNS surgery or was it another dr? If it was another try asking them and maybe they can give you an answer.

 

[UsedAndAbused]

Yeah tell me about it. It’s like ping pong or air hockey. My neurologist did not implant the device. It was implanted by the head neurosurgeon at the university here. From my understanding he’s not somebody that a person can just set up an appointment with. I did not even get to meet him actually. He was in for the surgery and was already out by the time I came to. At best I would need a referral, and even if it were possible I’m not so sure my neurologist would concur. There seems to be some serious backdoor, buddy-buddy drama going on behind the scenes. It’s almost like a soap opera – General Hospital: Neurosurgery. I’m going to have to be more direct with my neurologist about this though, because this is difficult to live with (and she’s difficult to deal with). I just don’t know if anything can be done.

 

[valeriedl]

Maybe try getting a hold of Cyberonics, it's the company who makes the VNS. They might be able to give you an answer.

Here's their web-site -

https://www.livanova.cyberonics.com/

 

[UsedAndAbused]

Actually a Cyberonics specialist/representative named Audra has been to all of my appointments since I had the device installed. She was with my neurologist every time my neurologist tinkered with the settings. She's sweet, seems knowledgeable, but at the same time she kind of comes across as a car saleswoman. They seem to have taken a deep interest in my case, but I'm not so sure if they're doing it for my benefit. Maybe so, but I think they see me as sort of a project too. My situation is very complicated.

 

[UsedAndAbused]

I forgot to mention that I brought up the stinging issue to Audra several times too, and she had no real explanation for it either.

 

[valeriedl]

Let me know if you find something out from someone, hopefully it's soon. This is really interesting.