Anybody ever had vns removed?

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acpollard2010

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I have been having multiple seizures a day my magnet and vns are up there pretty high when I try to run it one it seems ineffective and hurts my teeth and feals like my throat is closing.reason I ask is cause a lot po people had sucess and I did at first the other did felt like it was gonna come out my chest just worried if I am able to get it out if they get worse again.
 
acpollard2010 said:
I have been having multiple seizures a day my magnet and vns are up there pretty high when I try to run it one it seems ineffective and hurts my teeth and feals like my throat is closing.reason I ask is cause a lot po people had sucess and I did at first the other did felt like it was gonna come out my chest just worried if I am able to get it out if they get worse again.
Click to expand...

Has your dr. adjusted just the pulse width of the VNS? Sometimes by just adjusting the pulse width, that can eliminate these symptoms.

I have the VNS, also, and several times had the sensation of my throat closing and also wheezing. My neurologist has adjusted the pulse width to help me with these problems.

If that doesn't work, then the dr. can turn off the device.
 
I'm aware of several people who had the generator removed and only a few who went all the way with having the coils removed from the nerve itself (a more risky operation). Most of them posted their stories at the vns forum that Nak mentioned.
 
acpollard2010 said:
I have been having multiple seizures a day my magnet and vns are up there pretty high when I try to run it one it seems ineffective and hurts my teeth and feals like my throat is closing.reason I ask is cause a lot po people had sucess and I did at first the other did felt like it was gonna come out my chest just worried if I am able to get it out if they get worse again.
Click to expand...

While I'm having a seizure and use my magnet I don't have any problems but I know when I start to come out of my seizure and I'm using my magnet these things will happen to me too.

This will also happen if I use the magnet when I'm not having a seizure.
 
Sometimes enough is enough. The vns therapy can be the same way.

Removal depends on a few factors. Skill of the surgeon and the amount of scar tissue built up around the vagus nerve. You may have doctors who argue you don't need it removed. You'll need to make them realize it's YOUR body and you made the decision to remove the vns.

I had mine removed but under strict orders that I was to receive the explanted device. It took a bit of shopping around to find a surgeon willing to follow my rules. (hint: find one who works for Medtronics, arch rival of Cyberonic$) Well, 30 minutes before my surgery was to begin, a Cyberonic$ Rep showed up. He saw my name listed on the surgery schedule and deceived on his own to visit me. This jerk wanted to run a diagnostic and take my generator after it was explanted. OH HELL NO! I was ready to walk out. My surgeon assured me that he'd abide by my wishes and sent the guy packing.

Sure enough, as I awoke, he handed me a jar with the generator and part of one lead. He could not remove the electrodes because of excess scaring and the possibility of damaging the nerve was too great. The rest of the lead was broken into tiny pieces. Now my biggest problems are I can no longer get a MRI because those tiny electrodes will heat up and kill me.

Nice.

Thanks for lying to me Cyberonic$!

Anyway.......

Pop in on my site www.vnsmesssageboard.com and see how others have dealt with the same issues and their explants.


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I've had my vns turned off for almost three years now after having it in for hmm.... twelve years. I haven't noticed any difference with my seizures. I may have the stimulator taken out when/if I have a surgery next as it seems to confuse the results of mammograms. I did enjoy that the frequency was changeable and that it started me to chart my seizures.

It would also be nice to be able to have the wire lead to my vagus nerve removed, but I do not think it is possible as its been there far too long and I have no desire to harm that nerve as it is necessary for many things.
I am not able to have an mri for my neck due to the vns. An old fashioned ct scn with puncture was suggested in place of the mri.
 
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