Opinions on VNS

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SoonToBeMommy

SoonToBeMommy

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How would I go about talking to a neurologist about vns. I wonder if it may help with grand mals. I know i'd have to wait until i have the baby. But how does the testing and such start.

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Last week I told my doctor I was interested in the VNS and I asked her what she thought about it. We talked about my former, current and possible future meds for a while and decided together that the VNS could help me with my simple partial and complex partial seizures. I'm starting with a new EEG and MRI and a referral to a local neurosurgeon. He's supposed to be looking through my records this week and then I'll see him later for our first consultation. Meanwhile his office will go to my insurance about paying for the VNS procedure and we'll go from there. Want to hear from more people? Try www.vnsmessageboard.com.
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ps: When I had my baby in January (by cesarean) my dr told me I should wait six months before I went to my neurologist about the vns to make sure my baby was okay and my body recovered as proof that it would be able to handle such a procedure.
 
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I had a csection with my daughter and healed really well

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Hi Cint, I'm glad you posted the above about the negativity of the vns message board and that it's not just my perception. I even tried to look up some of the stats and references they were citing there and I couldn't find them. There was also some "conspiracy theory" sort of talk about the government wanting to kill us all. I don't plan to say any more about the vns board because I don't want to stir up any pots, or kick any hornets' nests or whatever, and I have no intention of entering into any dialogue re: that board or the opinions expressed thereon. In any case, I appreciate your input and I am definitely going to talk to my neuro about the vns.

For Soon to be Mommy, from what I have read and heard, vns seems like a very viable option for many of us. If you find anything else out and want to pm me about it I would appreciate that, and I can do the same for you if you would like.
 
Okay thanks arnie. The big thing I wonder though is do they need to pin point exactly what part of the brain the seizures come from?

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SoonToBeMommy said:
The big thing I wonder though is do they need to pin point exactly what part of the brain the seizures come from?

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Not necessarily for the VNS. If you're going in for brain surgery, then absolutely.

Here is another website that explains the VNS surgery:
http://www.epilepsy.com/epilepsy/vns

The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.

The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.
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Wow, I should have spent more time on that message board first! I'm sorry, I didn't realize it was a bad place to go.
 
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As I've stated many times here in the forums, I'd urge you to explore/exhaust all other options before getting a VNS. Getting a VNS entails some permanent consequences if it doesn't work out (or if it makes things worse).

Have you tried any of the "epilepsy diets" (LGIT, MAD, etc.) or EEG neurofeedback?
 
Bernard said:
As I've stated many times here in the forums, I'd urge you to explore/exhaust all other options before getting a VNS. Getting a VNS entails some permanent consequences if it doesn't work out (or if it makes things worse).
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:agree: I only had it done as a last resort, after a failed Left Temporal Lobectomy, which can have worse permanent side effects than the VNS for some. Speaking from experience.
 
I don't see how vns could be potentially worse than a lobectomy. At least a vns is, essentially, reversible since you can turn it off or take it out. A lobectomy is more permanent than tattoo!

Bernard, what are the potential permanent consequences of vns? I'm not at all certain I want to try that yet, and I have to talk to my neuro to see if I'm even a candidate for it, but I know that never in a million years will I have a hunk of my brain excised. I'm tired of all my seizures, but in the end Ican still live with them if necessary.

Cint, one question for you: Are you aware of the times when your vns does it's stimulation thing? I don't think I would want to have that interrupting my thoughts every 5 or 10 minutes.

Thanks, guys!
 
arnie said:
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Bernard, what are the potential permanent consequences of vns?
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It is exceedingly difficult to find a surgeon willing to remove the metal part that coils around the vagus nerve once it's in place. After the initial surgery to implant the VNS, scar tissue forms around the area and it becomes difficult to operate in that area. While removing the generator can be done if the VNS doesn't work out, the metal bit around the nerve often is a permanent implant. This can make certain MRI procedures unavailable.

Aside from that, there are anecdotal reports from other VNS patients of adverse effects exacerbated by the VNS that don't "return to normal" after the VNS is shut off (like sleep apnea, etc.).

I wrote a bit about the VNS for my chart of alternative treatment options. Here's the VNS page:

http://www.coping-with-epilepsy.com/index.php?p=vns-vagus-nerve
 
I couldn't do a diet. I don't eat at regular times and I can't portion very well. Thats just not an option for me.

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arnie said:
Cint, one question for you: Are you aware of the times when your vns does it's stimulation thing? I don't think I would want to have that interrupting my thoughts every 5 or 10 minutes.
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My VNS stimulates every 3 minutes for 8 seconds, called rapid cycling. Initially I was aware of it when it was stimulating, but I eventually got used to it. I am aware of it when speaking, tho. It does change the sound of my voice, but it doesn't interrupt my thoughts.

I've also had asthma like symptoms since having the VNS and I've suffered from shortness of breath. We had to try several different settings before finding the one that works for me. I also had trouble swallowing initially, even choked several times, but eventually it works itself out.
 
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