Spoke with LivaNova (VNS) consulant last night

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Topcat

Topcat

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I went to an epilepsy support group meet. The was a consultant named Shawn Vanderwall from LivaNova there speaking about the VNS.
LivaNova merged with Cyberonics.
He was speaking about the VNS.
I asked about "battery replacement." The battery is built in to the main unit. As I understand it the VNS consists of two parts. The main unit and the lead wires that go up to the vagus nerve. Therefore the entire main unit is replaced.
There is now a better (or at least more convenient) way for the neurologist to adjust the VNS.
With the old way the wand that is run over the VNS is larger and connected to a laptop with a wire.
The new way has a much smaller wand which is connected wirelessly to a tablet computer.
 
My neurologist just broached this subject with me the other day and I wonder if there is a better place on this site for info about VNS. Thanks. Dusty
 
Rep also said not to worry about using the magnet while on a laptop. Still I turn mine up in watch position rather than down.
 
Hi there, Topcat. If you want to read a lot about my multi-year journey with the VNS, here's the link:

http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

As I said in my recent post in the above link I'm just starting to read a book called "THe Danger Within Us" which talks about all sorts of medical implants, specifically the VNS. Kind of disturbing reading. I had high hopes for the VNS, but it caused me lots of pain, choking, breathing and speech difficulties, and we could never get it even close to a therapeutic level. After, I think, 4 months or so we turned it off and there it sits, always with me. The site where the generator is still even itches a little several times a day. It's not red or anything, just a little itch to remind me its there. The generator is very visible under my skin, as are the leads (to a point) and the three bundles of scar tissue, each about the size of half a jelly bean, that have formed around the ends of the leads and may be doing who-knows-what to my poor vagus nerve even now!

To add injury to insult, the VNS almost certainly caused me to get sleep apnea, and I've had to use a CPAP for almost a year now, and will probably be using it forevermore.

The good news is that I figured out a new way to schedule taking my Lamictal and have now been seizure free for 2 1/2 years, after having several hundred complex partials per year for over 30 years.

Carry on!
 
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Arnie - I am very sorry about your experience. If I were to write about my experience I would have to write only positive things. Each person is different though so just ask one's neurologist and see what he or she says about it.
Use it or not and hope and pray for the best.
 
Hi Topcat. This is not something that you should "hope and pray for the best" with.There truly is a ton of information about the VNS that Cyberonics (LivaNova now) is NOT going to tell you about or is going to drastically minimize. Relying on them as the "best" source of information on the VNS is like relying on tobacco companies for the best info on cigarettes. I'm truly not trying to rain on anyone's parade here, but there is more to this than LivaNova will admit to. As you can imagine, they have a HUGE financial stake in their product selling well and being portrayed in a positive light. They will not easily admit that they are selling a potentially dangerous device. (Again, think Big Tobacco).

Finally, I don't take everything I read as gospel truth, but from what I have read so far, from the research I did in the time prior to getting the VNS implanted, and from my intimate knowledge of the health-care/pharmaceutical collaborations (I worked in a hospital for about 15 years), I am certain that LivaNova, and Cyberonics before them, are being grossly less than forthcoming in the actual and potential risks of their products. caveat emptor. buyer beware! As for asking my neurologist or epileptologist, I found that there were a number of instances where the epileptologist was unable to answer my rather basic questions about the device and its programming./ One neurologist was unable to even program the device without an instruction manual and a call to the company. Not too confidence-inspiring!

Onward!
 
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Well Arnie I get the picture you DON'T like the device Okay. You don't need to talk down to me. I really don't appreciate it.
The device WORKS FOR ME!
 
Topcat. I apologize for having let this get personal and get you, and maybe others, pissed off at me. I didn't intend to do that. I had high hopes that the VNS would help me get rid of my 3 decades of refractory epilepsy and all I got was a lot of pain, discomfort and chronic sleep apnea. I was pretty disturbed, and still am, when I learned that the pharmaceutical and medical device industry is even more greedy and corrupt and uncaring than I realized. I'm also continuing to read how Cyberonics and other companies distort and cherry-pick the data from their trials, and how in so many ways the FDA has become a toothless old tiger and been bought and paid for by those companies. As for the VNS, it's true that a subset of people have seizure reduction (or complete elimination of seizures) or at least get to reduce their meds, and that's a good thing. What's not good is the extent to which Cyberonics has apparently ignored and/or minimized lots of poetetially very harmful longer-term side-effects. They will proudly report long-term seizure reduction and give themselves all credit for it, but if negative things occur they will say that it is not the fault of the VNS, but the progress of the underlying disease. All companies do that, and it's "business as usual" but that only makes it all the more egregious.
Again, I apologize for getting a negative tone going. I'm glad that you and others are doing well with it and that you continue to have success.

I still encourage you to read the book, though.

Cheers!
 
Hi Topcat,
I recently had my implant replaced in April and they said this new one will detect if you are going to have a seizure as it can detect your heart rate increase and will go off just prior to the seizure. I noticed it the first week or two doing that but have not since. I have not had any seizures for a year now. I have a weird seizure thing that I'll have two tonic clonics a year and maybe a complex partial. Been going on for 47 years. I do take a lot of medications Depakote and Carbatrol both strengths of each. Do you need a replacement VNS? They told me I needed new batteries and really when I go there found out the term VNS implant, batteries are interchangeable and I thought they put a new battery in but it is the whole new unit without new leads. I found out they can't give you the newest one if you have a certain older VNS. So that was a little unnerving until I found out mine matched. Thanks, Jeanne
 
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@ Jeanbean sorry I didn't get back to you earlier. I really wouldn't know if you need a replacement or not, sorry.
 
Topcat,
I was asking if you needed a new VNS. Thanks for the reply. Jeanne
 
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