VNS Journal. (Ongoing thread)

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

I got a VNS implant in 2007...and had it turned off in 2010.
I have been a singer my whole life so I asked my doctor if I would still be able to sing after I got the implant. He said it would just take a little bit of adjusting and then I would be back to normal
He was wrong.
I was not able to sing at all anymore and had to change my major from music education to business. Also anytime my heartrate got up, I would start wheezing for air, especially when it turned on, so I couldn't do too much physical activity. At first it was programed to go off every 5 minutes for 15 seconds but by 2010 it went off every 3 minutes for 30 seconds and when it did go off my voice sounded smaller and more hoarse. I was hospitalized for testing and one day I had so many seizures the doctors said they stopped counting at 200. Afterwards, when I had an appointment with my Neurologist he said that if my VNS were working it would have prevented at least some of that, so we turned it off and now I am wrestling with whether to get it taken out or not. It's just sitting in there doing nothing and it doesn't bother me unless I get hit there, then I'm down for an hour because it's painful. However, I'm just concerned about any long term effects.
I hope everything works out for the best for you Jeff!
 
If you, or anyone else, has your vns taken out from around your vagal nerve, please inform us of it. I would like to hear how this happens.
I had my vns implanted fifteen years ago and the second one turned off four years ago. I cannot have an mri of my neck done.
When I read of removals they say that full removals of the vns are becoming more frequent. (Ten is greater than zero) Not just the battery is taken out now. When I had asked about full removal, the doctors were a bit fearful of damaging my vagal nerve and the surrounding tissue. It's possible I've had it in so long it's simply part of my body now. We're all becoming bionic
 
I cannot have an mri of my neck done due to the vns metal electrode wrapped around that nerve in my neck. An mri was suggested quite some time ago, but the radiologist said no way. I'm glad he was aware of the possiblle bad effects.
I think they use special mri devices/or settings for me when I have my head done since I have the vns. I am not certain.

http://www.vnsmessageboard.com/index.php?action=articles;sa=view;article=3
 
DayDreamer,
I was told as well that if I got it removed that they could only take out the battery part for fear of damaging my vagal nerve
 
DayDreamer,
I was told as well that if I got it removed that they could only take out the battery part for fear of damaging my vagal nerve

I've heard yes and no from different people. Your reason and someone else said that you can as long as it is turned off.

It really doesn't matter for me now one way or the other because I can't have one now anyway. I had screws put in my back in January for problems that I was having.
 
DayDreamer,
I was told as well that if I got it removed that they could only take out the battery part for fear of damaging my vagal nerve

I've heard yes and no from different people. Your reason and someone else said that you can as long as it is turned off.
...

Removing the lead from the vagal nerve is a high risk operation. There is scar tissue around the nerve from the initial operation and it makes the procedure difficult. From what I've heard, there are only a few surgeons willing (able?) to do the removal surgery because of the high risk.
 
In my own opinion, my voice is gone. I had a meeting this week and had to lean over to my cohorts to have them speak for me. Not cool. I honestly figure that if it does not work, it is coming out completely. I was told that it may take up to 6mos for the nerve to heal. If you are a business person or anyone that must speak for their job, I strongly suggest not having the VNS device implanted. I know we have many success stories, but they are tied with the failure stories. I have my Dr appointment next week, (of course I will keep all of you informed) and we shall see what is said. I vowed that I would give it the 6mo grace period, but my situation has not improved. I have had more seizures since it was put in then before. MG, the Doc has me so far on the same setting as yourself. And thank you for input. -Jeff
 
Last edited:
This is a really interesting (and informative) thread! Thank you, Screaminghelix! I also have a VNS, and have had some interesting things happen, but nowhere near as difficult as yours. My first VNS went in back in 2005. It helped for awhile, made my seizures less intense, and reduced the number per month.

But then it stopped helping.

We checked it every time I saw the doctor, and ended up having it turned up as HIGH as humanly possible, going off every 2 minutes or so. Finally, we decided that there was some kind of...I don't know, "glitch" or something, and I was in need of a battery change (I swear, I feel like Data from "Star Trek TNG!") Anyway, when the surgeon went in he ended up replacing the whole UNIT. Turns out that the wire had come loose, and was no longer attached to the VNS...but still around my nerve. They reattached the wire to the new unit.

I still get hoarse when the unit goes off, and when I use the magnet I sound like Darth Vadar! I am also still taking a lot of AEDs, and having 8-12 complex-partials a month (and a lot of simples too-stopped keeping track of those, though.) They only last 1-2 minutes, though. Headaches? OH YEAH. But you might still be adjusting. I've had this thing for 8 years, but I still get aching and tenderness in my chest and some throat pain. But hang in there! It may take a bit, but your body (and your family) is still getting used to it. Worrying can only make your seizures worse, right? Stress (and adrenaline) are triggers for me!

Sending you love from Oregon, and I am glad that you are here. I told my husband the other day that after finding this forum I feel like...like I've found someplace that I can talk to people who really understand what it's like to live with this...and won't freak out, shove something in my mouth, or think I'm mentally ill if I have a seizure.

Stay cool! You can do it!
 
Last edited:
I got a VNS implant in 2007...and had it turned off in 2010.
I have been a singer my whole life so I asked my doctor if I would still be able to sing after I got the implant. He said it would just take a little bit of adjusting and then I would be back to normal
He was wrong.

I find it hard to believe that your dr. told you that you would be able to continue your singing after you had the VNS implant. I'm not saying I don't believe you, but that I cannot believe the dr. had the audacity to tell you such a lie. This why every patient needs to do all investigation with every surgery.

The problems I've had are breathing/wheezing on occasion. Initially, I also had trouble at times with swallowing. It does cause my voice to go hoarse for a couple of seconds every 3 minutes. So if a dr. had told me it would only take a matter of time to adjust back to normal, I think I would have lots of questions for him/her. Once it is implanted and turned on, you're never back to "normal".
 
I am also still taking a lot of AEDs, and having 8-12 complex-partials a month (and a lot of simples too-stopped keeping track of those, though.) They only last 1-2 minutes, though. Headaches? OH YEAH. But you might still be adjusting. I've had this thing for 8 years, but I still get aching and tenderness in my chest and some throat pain. But hang in there! It may take a bit, but your body (and your family) is still getting used to it. Worrying can only make your seizures worse, right? Stress (and adrenaline) are triggers for me!

I've had my VNS for almost 6 years now. I am also taking a good bit of meds too and I know the neuro has it turned up pretty high, but I don't know what the settings are.

It did reduce the ammount of seizures and how bad they were when I first got it but recently I've started having more seizues than I've had over the past few years. A good bit are like the ones that you are describing Mungie. I don't know if my battery could be starting to die or if there might be something wrong with the VNS now that I've read this.

I also get short of breath when I sing. I don't do it professionaly just around the house. I usually can't make it through a whole verse without loosing my breath. I never knew that could be caused by the VNS.

I usually don't get headaches unless I've had a seizure. These are horrible ones that last for hours. Other than that the VNS has never brought on any headaches for me.

My neuro did mention on my last visit, about 2 months ago, that he wanted to start changing my meds around again, this was before I started having more seizures than usual however.

I'm going to ask him about the battery too. If it needs changed then I hope that will get things back to normal, as normal as they were at least.

Do you know if there's any way that the battery can be tested to see how much 'juce' it's got left in it?
 
Last edited:
Testing

Valeriedl...yes! Your doctor should be checking it at every appointment! The thing they put over it to change the settings and such is/should be reading the battery life left...approximately, anyway. That's the problem I had with the first one...it read okay, and it was still charged sufficiently. It's just the connection that was screwed up. They just went ahead and gave me the new unit since I was already opened up!

Doesn't your doctor ever check yours?:rulez:
 
Valeriedl...yes! Your doctor should be checking it at every appointment! The thing they put over it to change the settings and such is/should be reading the battery life left...approximately, anyway. That's the problem I had with the first one...it read okay, and it was still charged sufficiently. It's just the connection that was screwed up. They just went ahead and gave me the new unit since I was already opened up!

Doesn't your doctor ever check yours?:rulez:

Yes he checks it every visit, 4 times a year, more if I see him more times than that.

I just wasn't sure if what he was doing was also testing the battery too. Now that I think of it however he did tell me that my battery still had life in it on my last visit, I just don't remember how much he said there was. Mines 6 years old now and I can't remember how long the battery should last, I think it was around 8 years? My mind's not that great anymore.

I've had it since 2007 and it's just been with in the last 2 months that I've started to have more seizures than usual. I don't think the connection would have been messed up and were just noticing it now? I was having less seizures up till recently.

I see him the begining of next month so I'll beable to talk this all over with him to see what he thinks might be going on.
 
Uhhh....I was wrong. I guess the doctors can see when the battery is ready to be changed, but not the actual percentage. My husband remembered this. So sorry for the wrong info! I guess there is a setting in them that sort of...warns when it gets to, like, 10% and then it's time for a newbie. My doctors give me an estimate based on my settings and how long I have had it.

Seems ridiculous...there are battery testers for other medical bits and bobs. Hopefully the newer models will have some kind of upgrade.
 
Uhhh....I was wrong. I guess the doctors can see when the battery is ready to be changed, but not the actual percentage. My husband remembered this. So sorry for the wrong info! I guess there is a setting in them that sort of...warns when it gets to, like, 10% and then it's time for a newbie. My doctors give me an estimate based on my settings and how long I have had it.

Seems ridiculous...there are battery testers for other medical bits and bobs. Hopefully the newer models will have some kind of upgrade.

That's ok, I mess things up all the time. Like I said memory's not too good. Don't let your husband know he was right about something and you weren't. He'll never let you forget it!!! :roflmao:

That is pretty dumb about being able to test sometings and not others. Too bad you just can't stick your tounge on it and see if it tingles like a regular battery? I know my husband would jump at the chance to do that, don't think he'd let the neuro though.
 
Do you know if there's any way that the battery can be tested to see how much 'juce' it's got left in it?

You can check your battery the same way that you do when you start the stimulation in the battery, by passing your magnet over the Pulse Generator. If you don't feel that stimulation, then it is time to call your neuro and have him/her do some investigation. Plus if you notice your seizure have changed in frequency and intensity, then more than likely it is time for a new battery.
 
March 16) Well my appt was delayed with the Dr, so I hope I can get an appt next week. Speaking from my heart, I regret my decision to get the implant. I was fine with my petit and auras. Truly I was okay with 10 or 15 of these episodes. As many of us, they become part of daily life. I should have said no, like the wife said. (I still do not hear the end of it.lol) In my own, I would say that if your are having major issues with control, then yes the VNS is worth the try. Remember that all Drs and every surgery is different and things can go wrong. I, since the implant, I do not go out very often. I can talk to someone in a noiseless setting, but if there is any background noise, I am mute. You never realize what and how you use your voice on a daily basis until its gone. As I said, I would always look at it as a last resort. Having it put in, the supposed benefits do not outweigh what I have lost. Personally. You never realize. I will hang in there as always, but I will never forget the day I said yes, and the last day I could talk to my family and be heard. My message is, Think Carefully. Talk to you soon, Jeff
 
Screaminghelix-
sending lots of hugs your way! I'm so sorry this has been such a difficult process for you. (That comment about you not hearing the end of it from your wife made me giggle though) Best wishes to you and your family
 
March 22) Hello my family. I had my appt today. Woke this morning and had two small episodes, so I was looking forward to seeing my Dr. He upped the power and moved the interval from 5min to 3min. I went and had my blood drawn to check my meds. And as soon as I got out from there, seizure. Hung on til I got home relaxed a bit. After about 30min, had another rough one and had to lay down. The VNS still did not stop them. We are messing with my meds due to my Dilantin levels being high. In the past 3 days I have had at least 25-30 episodes. And as you all know, that many takes it out of you. And mglynn2- My wife was already ahead of me today, calling the Dr's office and giving the run-down before I got in there. And I did not know about it, so I was like, "Hey this nurse can read minds!" Long story short, VNS turned up, still seizures. However, lets see what the bloodwork says. With all the meds I am on, the levels could be off. So lets see what happens. I promise to keep you posted. -Jeff
 
Apr 25) Apologies for my delay. Had my VNS turned up the 23rd of April. As it goes off every minute and a half, it gives me the chest fluttering and makes me feel a bit nauseous. Had 2 partials, 6 absence and one tonic since. My levels were high for Dilantin, so the Doc reduced the amount for now. The trouble with that is I usually have a grand mal before he tells me to go back to my normal dose. I'll be honest again and tell you that I hate this thing. However, if you have it and it works, I envy you. lol Next time the voltage doubles. So if you see a guy walking down the street and he looks as if he just grabbed an electric fence, stay back for 30sec, and then come up and say "hi". lol -Jeff
 
Back
Top Bottom