Hello,

My daugther has been the first to receive a vns in my country in 99. After 8 months they had to remove the device due to too much side effects. She first had a big problem that happily did not last: she was hearing voices and almost killed herself.

That has been followed since then by another problem. One of her vocal cord is paralysed and she is very susceptible to allergies. When ever exposed to an allergen substances her trhoat swallow and she can hardly breathe.

Is there any body that has a similar experience?
Thanks
Nicole L.

Hi Nicole

I am sorry to hear your daughter had such a bad experiance with VNS. She is not alone! There have been others who have vocal fold paralysis. Sometimes these conditions can correct them selves, some are permanent. We have several members with voice issues.

You daughter is the first I had heard who had been hearing voices but this is a side effect I was aware of as well as suicidal tendencies.

How old was your daughter when she was implanted?

My daughter was 20 when she wa implanted.
I am happy to see she is not the only one with the vocal cord problem. I would like to hear from other people with similar effect.
Nicole

My VNS was implanted in April of 07.

I am asking to have mine turned off tomorrow.

My depression is worse, along with my panic attacks and anxiety attacks.

My allergies are giving me so many more problems.

I was given a sleep apnea test in May and was told I stop breathing everytime the VNS goes off. I make this awlful noise that wakes me up and the lady that brought out my cpep and oxygen machines says it sounds like the death rattle to her.

I couldn't use the CPEP machine so they put me on oxygen and I can't use it either. I stop breathing and make this awlful noise and it causes the machines to make a loud noise. I quit both at this time.

I also am having trouble with nausea and trouble with my stomach.

I am to the point that I am scared of it.

I had to go to the ER in July and they didn't know what it was and they couldn't shut if off for me. I was throwing up so bad that I couldn't tell them what it was.
My daughter gave them the magnet and they thought that the magnet was the VNS itself.

My question is if the hospitals donot know what it is or how to shut if off, what is done in case of heart problems or emergency surgeries that have to be done?

I have had major breathing problems with mine so you daughter is not alone.

Ada

Emergency rooms are not set up to handle VNS problems nor the equipment or knowledge to use the equipment.