VNS

[Janus]

I had the VNS INSTALLED yesterday. We can not do anything about my loss of voice. I already have lost most of my voice. I am so upset. I wish I never had this done. I would take seizures over the loss of voice, any day. I can't have it undone. They said. I may find someone in another country. I can't really do the operation by myself.
I expect this to not help with any seizure activity. The surgeon/ hospital just made a bundle of money on human mutilation. I would have this undone. Be aware. I've never heard of a good outcome from this but like an idiot I followed the lemmings right over the cliff. Please help me if anybody knows what to do. Is there a place in Mexico or something that will give you back your god given right to have a voice. THE VOICE YOU WERE BORN WITH!! I hope this helps someone. I need help.

 

[Bernard]

I can only imagine how difficult things are for you at the moment, but it does take time for people to acclimate to the VNS and for doctors to find the right settings for the VNS to balance seizure control and quality of life. You just had it installed yesterday. If the settings are too aggressive out of the gate, maybe your neuro can adjust them to a less severe setting.

 

[valeriedl]

When I got my VNS I would have trouble talking because I wasn't used to the tickle in my throught that happened every time the VNS went off. It did take a little while until I was used to it and I could talk better. Every time he changes the settings the tickle comes again and I have to get used to it, even now.

Like Bernard said the settings might be too aggressive. When I use the VNS I'll start coughing and I can't talk again until it settles down.

My voice changed too and I wasn't able to do things that I could before I got the VNS. One was that I used to be able to 'caw' like a crow, can't do it now.

 

[suebear]

I had the VNS INSTALLED yesterday. We can not do anything about my loss of voice. I already have lost most of my voice. I am so upset. I wish I never had this done. I would take seizures over the loss of voice, any day. I can't have it undone. They said. I may find someone in another country. I can't really do the operation by myself.
I expect this to not help with any seizure activity. The surgeon/ hospital just made a bundle of money on human mutilation. I would have this undone. Be aware. I've never heard of a good outcome from this but like an idiot I followed the lemmings right over the cliff. Please help me if anybody knows what to do. Is there a place in Mexico or something that will give you back your god given right to have a voice. THE VOICE YOU WERE BORN WITH!! I hope this helps someone. I need help.

Every thing will happen in time, VNS reacts differently with patients. The settings were needed to be changed, that is all that was needed to take place then I could move forward. Life gives us little or large steps we need to take and before we take those steps we need to think first as there are lessons for each step taken. It's the journey we have been given. That is how I look at things.

I wish you the very best of health with your VNS and your recovery.

 

[Janus]

Thank you all. I now have had the VNS installed for one week and it's not turned on yet. I've had no seizures this week. By chance me the vans is not turned on at all yet. But my voice is all gone. Sall my life and now especially in the last 6 months I have been complimented on what a nice voice I have. Even Lady month. " You have such a nice voice to hear' it's gone, I can barely whisper and throat sore. I think I signed my death certificate. They have no liability. I had metal installed that can't come out. I can't believe this. I am not sure this can be better than seizures. Though I live alone and epilepsy sucks.

I'm so mad. At least it's doesn't matter if I can talk: no one listens to what I say.
But wow.. this is bad.

 

[Bernard]

I thought that the temporary loss of voice was a pretty common with VNS surgery and it will return as you heal/recover from the surgery. Has your doctor said anything about the loss of voice?

 

[Janus]

Thank you. This is comforting

 

[Janus]

Thank you. This is comforting

It means a lot to me that you guys are here. Everything you say. My voice came back. I was scared.

 

[Janus]

Hello again. I had the electric pulse turned on, on Friday for the VNS. I CAME HOME AND HAD TWO (2) SEIZURES. in my sleep.
My current, temporary caregiver is sleeping here so she got up in the night and did the magnet swipe. I think that stopped them.
I go back to the doc too have the voltage turned up. I am grateful that I don't really feel it now.
But nervous that the amps are going up.
I'm not sure how this may affect my libido.

 

[Army Vet]

Hi Janus. Glad to hear things are getting better. I've had a VNS for about eight years now. Only took an agonizing two years to get it approved through the VA. I listened to a lot of elevator music while on hold only to be hung up on and call right back. It was my day job to call once a day. Call, be put on hold (ignore) for an hour or so and tell them who I had talked to the previous day. I'd write it down so when they came back and said I needed to talk to someone else and try and transfer me, I would stop them right there and tell them I had already talked to them and they transferred me to you. Hold please. I think my consistency annoyed them enough to finally give in.

Anyway, I kinda remember my experience when I first got it. I definitely remember having a hard time speaking at first. Then the other bad side effect was it gave me dry mouth which of course also led to a dry sore throat. Plus anytime it would go off, I'd have to clear my throat which aggravated it even more. However, I've gotten used to it and have to say it has helped "snap me out of it" when I swipe the magnet. It's one of my things I don't leave the house without. My mom has used it on me and I come out of it a lot faster now. It's also limited the number of seizures in general.

It still gives me trouble when speaking sometimes, but I just have to clear my throat and move on. As for the dry mouth, I found an excellent mouthwash that ACT makes for dry mouth. I highly recommend it if you're having any trouble.

As for the voltage, like the medications, it definitely needs to be down in small increments. I think I went up in 25 mA increments. I think the first time he bumped it up, he did it too much at once. Not to scare you, but it felt like someone karate chopped my throat and it gagged me. I kept it very low after that for awhile. I went back and went smaller and I was able to get used to it. I also had "magnet workouts." Throughout the day, I would randomly swipe the magnet since it is 25 mA more than the regular setting. This helped build my tolerance faster to turn it up more.