VNS Battery replacement is it worth it?

Posted by lsittll @lsittll, Nov 9, 2020

My doctor at University Maryland is very insistent that my VNS battery be replaced because of it helping the seizures. I have had it for 9 years, 5 of which I saw her. I never noticed any difference. The battery is at a very low level I have added a new medication yet I have seen two months of no seizures.It is doing any good? Furthermore I told her that because the hospital does not accept my insurance I could not have it done there. She referred it to the neurosurgeon at University of Maryland. My Insurance is only accepted at one local hospital. I do not know if Cigna covers VNS battery replacement surgery. I am sure there is a copay for me. The last thing I will do is pay any additional monies/copay for this

@lsittll Your doctor wishes you to change the battery in your VNS but you question if it is helping manage your seizures. You do not want to pay any additional fees for the surgery to change the battery, especially since you believe that your VNS is not working.

Members @jakedduck1 and @1710dave are familiar with epilepsy and they may be able to answer you question.

I'm wondering if you and your provider were able to discuss the potential repercussions of passively allowing your VNS battery to expire and if she feels there is evidence of the VNS being therapeutic?

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It depends on whether or not the VNS is working for you. for my son, totally worth it. If it wasn't, then no.

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@isittll
I'm not very knowledgeable regarding the VNS. Although VNS is helpful in some my first thought is why beat a dead horse. But I'm not much of a VNS fan anyway. If it was working you'd be the most likely person to known I'd think. If I hadn’t noticed any difference in seizures in a nine year period I wouldn’t go through the battery replacement surgery.
Do you have any side effects from it? If you decide not to replace the battery would you have the coil removed?
I’m not sure what type of seizure activity shows up on your EEG, if any. But I'm curious if a lot of Focal or Tonic-Clonic activity showed up on the EEG yet didn't progress to an actual symptomatic seizure, would the VNS suppress any of that activity? Does anyone know? Personally I would think it would but I don’t now.
@nicosmom
Glad your son is benefiting from his VNS.
How often did your son have seizures prior to versus post VNS implant?
Take care & hope you both are seizure-free,
Jake

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@isittll
I heard a neurologist or neurosurgeon say on Mayo Clinic one time it’s not the number of anti-seizure medications or the combination that usually helps it’s usually the last drug given. This seems to hold true in your case.
I’d like to know your doctors reasoning as to why she believes the VNS is helping you.
Blessings,
Jake

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@jakedduck1

@isittll
I'm not very knowledgeable regarding the VNS. Although VNS is helpful in some my first thought is why beat a dead horse. But I'm not much of a VNS fan anyway. If it was working you'd be the most likely person to known I'd think. If I hadn’t noticed any difference in seizures in a nine year period I wouldn’t go through the battery replacement surgery.
Do you have any side effects from it? If you decide not to replace the battery would you have the coil removed?
I’m not sure what type of seizure activity shows up on your EEG, if any. But I'm curious if a lot of Focal or Tonic-Clonic activity showed up on the EEG yet didn't progress to an actual symptomatic seizure, would the VNS suppress any of that activity? Does anyone know? Personally I would think it would but I don’t now.
@nicosmom
Glad your son is benefiting from his VNS.
How often did your son have seizures prior to versus post VNS implant?
Take care & hope you both are seizure-free,
Jake

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When Nico got his VNS at 11 years old, he having dozens of seizures a day and status events that would land him in the hospital a few times a month. All while on 5 meds and 2 emergency neds. He went straight to no seizures. Over the next 9 years he had 2 grand mals, both caused by high fevers. And he got down to 2 meds during that time.

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@nicosmom
WOW, that's an amazing success story. It's not often VNS control is so high and quick.
Were most of his seizures Generalized or Focal?
Take care,
Jake

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@jakedduck1
I would also like to know her reasoning in why the VNS is helping me. Whatever, I cannot afford to replace the battery and pay for it on my own if Cigna does not cover the cost of such a procedure. if it does cover the cost of the procedure I always have a copay with an HMO. That will be too huge for me to afford.
My doctor is just going to have to face the fact that I must go without the VNS. Let her pay for her it if she wants me to have it so badly,
Take care.
Laurie

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@nicosmom

When Nico got his VNS at 11 years old, he having dozens of seizures a day and status events that would land him in the hospital a few times a month. All while on 5 meds and 2 emergency neds. He went straight to no seizures. Over the next 9 years he had 2 grand mals, both caused by high fevers. And he got down to 2 meds during that time.

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@nicosmom I notice that you have been a member for awhile but that you only posted recently. I wanted to formally tell you, Welcome to Mayo Clinic Connect. It sounds like your son has had success with VNS. Is there any advice that you've picked up or things you wish you would have known, that'd you be willing to share?

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It is good that the VNS is good for some. But unfortunately, it is of no benefit for some of us. I have not found it to do any good. The fact that my doctor is at the University of Maryland Medical Center and many of its patients have the VNS with great success. I assume that my doctor is one of them. The battery level of the VNS was at 8-18% almost a month ago. Let the battery die out see if the seizures are affected. If they are then replace the battery is what I say to do at this point. The longer I wait to find out of Cigna health insurance covers the cost 100% the lower the battery will get. I can show my doctor that way for sure!

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