It has been 7 years since my daughter was implanted with the VNS. Back then, the number of side effects listed were minimal. Much to my surprise the list has grown tremendously. Over the years my daughter (who is severely developmentally delayed and non-verbal) has been putting her fingers up near her ear canal. She's not plugging the ear canal but is pressing right above it and pressing hard enough to cause a sore. I've often speculated that she's experiencing tinnitus and thought it was from the other AEDs that she was on. Now looking at the list of side effects reported with the VNS, tinnitus is listed.

The VNS still has power and has never really been beneficial to her seizure control. At any rate, I'm eager to find out from other VNS recipients if they have experienced tinnitus from the VNS and if the condition has gone away if you have had the device removed or the unit turned off.

Karen

:D HI Karen!

I am sorry to hear VNS has not helped your daughter with her seizures. It must be very hard on you as her Mom to have tried this type of treatment with no success.

I was never diagnosed with tinnutis, but did experience awful ear pain with VNS at a higher setting which was better when it was lower, and completely gone when the device was shut off.

I hope her doc is able to help her out rather quickly with this. Maybe a lower miliamp, or shut it off since it hasn't be beneficial for her. Please let us know how things are going.

Take care!
B)

Ear pain and a LOT of it! This is a very common side effect. I believe it has to do with the facial being so close to the vagus nerve. Another problem is over time, scar tissue will tend to develop new neuro pathways and that can cause pain and discomfort too.

Pain frequency was drasticly reduced when the unit was turned off but there is still some residual pain, mostly with weather changes.

I had AWFUL ear pain when mine was on and facial pain as well. My ear still hurts at times when wind blows by it, or the weather pressure changes. (season changes) My VNS has been off and out of me for 5 years now!

The VNS didn't help me at all, and I would have to say one of the most painful things I have ever done.

Elisa

Tinnitus is thankfully one of the side effects I haven't experienced - at least, not yet anyway. Sorry to hear your daughter is having this to contend with, on top of everything else.

Thanks for all the great responses. I was so afraid I'd strike out on this post but I was so pleasantly surprised. Our appointment is on Thursday and I'm pretty confident that Aimee's neuro will back me up on my decision to turn it off. I'm trying to be confident on this but as you all probably know, when you think you've hit the nail on the head, there's always something that seems to stand in the way. Hopefully that hammer will hit that nail into smitherines!

Will keep you posted!

~Karen

Hi Karen,

Just a thought...tinnitus in my own personal experience is not painful. Generally it is an issue of sound, not pain.

So, if your daughter has been pressing so hard that it has created a sore, it seems like she is trying to stop pain.

As everyone else has said, hope your doc is receptive...if not, do whatever you need to do to get the VNS turned off. Have you taped the magnet to the generator for a day or two to stop the stimulation and see if there's any difference?

I hope all goes well! Oreo

Please get it turned off. Her poking her ear so hard must mean it is very painful!!

:D HI Karen!

I hope all goes well at her appointment on Thursday!

Oreo made a great suggestion to tape the magnet over the generator site to shut it off and see if she does better. She must be in pain. Please give her big :bigarmhug: from us!

I am looking forward to your update! Take care!
B)

Had our neuro appt and he said that since the battery was so old (7 years) and even though it still is registering power, he said that it's probably extremely weak. He was all for turning it off and said it probably wasn't doing anything anyway, even if it was. Although Aimee still puts her fingers up to her ears, it does seem that she's not doing it as often. So at this point, I think it's still too early to say that the VNS was the culprit. In any event, there were no ill effects by turning it off.

Aimee just started Banzel and titration is a long process to minimize the side effects. We'll be seeing him again in a couple of months and at that time we'll talk about the removal of the VNS. I'm sure the coil will be near to impossible to be removed because of 7 years worth of scar tissue growth however, since the coil has moved forward, I can feel it and maybe with some luck the neurosurgeon can remove it. I won't hold my breath, though.

Thanks to all for all your replies.

~Karen

:D HI Karen!

Thanks for the update on Aimee's doctor appointment. I am glad the device is off and Aimee touching her ear is not as often as it had been with the device on.

There's a couple Members here that have been told by explanting surgeons that it is possible to have complete removal with a lot of scar tissue build up, and actually at times, it is better to have a lot of tissue. I hope Aimee will be able to have complete removal so she can have MRI's.

I wish the best of luck with the new med! Please do keep us updated!

Take care!
B)

I think also as time goes by, a good portion of the ear pain she has will subside. The body is used to the stimulation and is "remembering" the cycle of her stimulation. Hopefully she'll do well with the new med. :)