The Vagus Nerve Stimulation (VNS) battery in my chest is dead

Posted by lsittll @lsittll, Jul 29 12:21pm

I have a dead VNS battery in my chest. I WILL NOT have the battery replaced. I must pay thousands of dollars for non surgical related fees because I am in an HMO.but I do not feel comfortable having a dead battery inside my body. I am afraid the corrosion of the battery will do something to my body. I wish I could pull the VNS out of my chest .
Of course my doctor says it will do no harm other than increase my seizures.. But is has not been beneficial in 21 years. Does anyone think a dead battery in ones body will do any harm? Please help calm my fears.

@lsittll
I don't know the answer to that question and have posted the question on an Epilepsy forum.
Like they say, seizures may increase provided the device was helping to control them.
Have you filed a grievance with the insurance company to get the charges covered?
I filed several grievances with my moms last insurance company, of course you'll lose the first time. They usually hear the grievance within the insurance company but if you file and additional grievance they normally have that grievance heard buy an impartial jury/company
I'll let you know if I get any responses.
Jake

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@jakedduck1
Thank you for your effort in what you have done to assist me.
As I stated in my earlier post this thing has never done any good. I would not have had all the seizures I have had since that thing has been in my body.. It has only been the addition of the drug Zonisamide that has made things better. But my doctor insists the VNS is what is doing it. I'd like to know her reasoning. The battery has been very low and become dead but my seizures are still extremely less, monthly, bimonthly. So how can it be the VNS?
Thank you again.

Laurie

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Hi @lsittll
I am sad to hear that the VNS has not been a good experience for you.
According to your posts, it looks that the AED Zonisamide is keeping your seizures more under control than the VNS. I understand you have had the VNS already for years, correct? I also do not know the answer. But, have you thought of searching for a second medical opinion, scheduling an appointment preferably with an epileptologist?
What I have read is that an epileptologist after finishing the general training in brain neurology, he or she does 2 to 3 additional years to become an epileptologist to learn how to take care of people with epilepsy. There are so many diseases that affect the brain that someone who is a general neurologist will hardly be up to date on every new medicine, device, technology, etc., regarding epilepsy.
I, myself, have been treated by neuropsychiatrists, neurologists, before treating by an epileptologist. I see a big difference!!!
All the best to you!
Santosha

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@lsittll
This is the only reply I have received so far. I imagine this is a rare situation. Most people seem to get a new battery or have the device removed.

“I don't know anything about the VNS (other than what it IS obviously) but I've an acquaintance who has had four pacemakers installed for her heart over a period of many years, and all they did was "zap" the old ones to "kill" them, leaving them in place in her chest. I'm assuming that this means that their little batteries are still there as well, and nobody seemed (nor seems) to have any concern over it.
Hope that this helps you in some small way, at least before you can get this question to your Doc! :)”

Jake

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@lsittll I can see why you are concerned and why you would want the battery removed. You will notice that I updated the title of your post to help others better find this discussion if they have had the same experience as well.

I did find some basic information (below). I am guessing all of this is what you may already be familiar with. Consistently in the articles I read, it states that removal of the device itself, not always the leads, is the next path if you had a reaction to the device and/or it isn't working properly.

– Vagus Nerve Stimulation (VNS):
https://epilepsysociety.org.uk/about-epilepsy/treatment/vagus-nerve-stimulation
"The stimulator has a battery inside it which can last up to ten years. When the battery is low, the stimulator needs to be replaced, during an operation similar to the one when it was put in."

You mentioned that it hasn't worked for you for your epilepsy for 21 years. Have you requested removal before?

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lsittll
The manufacturer claims the battery can not leak and the risks of leaving in a none functional unit are no greater.
There have been battery issues. Some are none specific one didn't work from day one another said “defective manufacturing.”
There are nearly 400 pages of problems but if the issues aren't specifically detailed what good is the information.
As I recall deaths occurred during testing prior to FDA approval which wasn't disclosed to the FDA. Perhaps the manufacturer could prove those deaths weren’t related to the VNS but if so why the cover-up?
Take care,
Jake

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@amandajro

@lsittll I can see why you are concerned and why you would want the battery removed. You will notice that I updated the title of your post to help others better find this discussion if they have had the same experience as well.

I did find some basic information (below). I am guessing all of this is what you may already be familiar with. Consistently in the articles I read, it states that removal of the device itself, not always the leads, is the next path if you had a reaction to the device and/or it isn't working properly.

– Vagus Nerve Stimulation (VNS):
https://epilepsysociety.org.uk/about-epilepsy/treatment/vagus-nerve-stimulation
"The stimulator has a battery inside it which can last up to ten years. When the battery is low, the stimulator needs to be replaced, during an operation similar to the one when it was put in."

You mentioned that it hasn't worked for you for your epilepsy for 21 years. Have you requested removal before?

Jump to this post

@amanjaro thank you for the information. The VNS has not worked for me at all. My mother always said that. There is no evidence that the VNS has ever worked for me. I don't know why my doctor is so insistent that it stay in. She says its like an added piece of medicine. My seizures are preceded by auras but they occur during my sleep so I can't place the battery over the VNS to prevent a seizure. My doctor says it fires off by itself.
I have never requested removal before. I did not want the battery replaced before but I did not know how to tell my doctor this. Now I am adamantly saying no.
The VNS can be quite bothersome. I cannot exercise at a rapid pace because I am out of breath, gasp and get a feeling like a knife is in my throat in no time. Sometimes crying makes it feel like there is a knife in my throat. I would not have this discomfort if the VNS was out. Neither would I have any discomfort about anything happening with the battery if it was out.

Laurie

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@isittll
It's not an added piece of medicine if the battery is dead. If your doctor agrees to remove it do you still have to pay thousands of dollars?
Sounds like it might be time to change doctors. Have you ever considered when you have it removed having the coil removed as well which should decrease your symptoms. Do or did you ever have coughing or swallowing problems robust the throat pain shortness of breath?
Good luck,
Jake

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@jakedduck1

lsittll
The manufacturer claims the battery can not leak and the risks of leaving in a none functional unit are no greater.
There have been battery issues. Some are none specific one didn't work from day one another said “defective manufacturing.”
There are nearly 400 pages of problems but if the issues aren't specifically detailed what good is the information.
As I recall deaths occurred during testing prior to FDA approval which wasn't disclosed to the FDA. Perhaps the manufacturer could prove those deaths weren’t related to the VNS but if so why the cover-up?
Take care,
Jake

Jump to this post

Jake
If the manufacturer claims the battery cannot leak that is why my doctor says it is okay to keep it in. The manufacturer doesn't appear to be be the best. To cover up deaths? You say your friend has pacemaker batteries in her body and has not had any problems? Right? I would go by real live evidence rather than by word, what the manufacturer says
You take care too.
Laurie

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