The VNS

I have been looking at some blogs of other people who have a VNS implant to see what their experiences have been with it. I'm having problems with mine that are stumping my doctors, but after my research, I have found that there are quite a # of people out there who have experienced similar problems. When the VNS is on, it feels as if my throat is closing. I cannot talk well and it takes all my energy just to speak at a normal volume. If there is a lot of noise in the room, no one can hear me. I feel like I am straining to make even the slightest sound. The more it is turned up, the harder it is and the more it hurts. It feels like a shock. So, the other problem is that breathing is hard. It feels almost like I'm trying to catch my breath even though I've been doing nothing to cause that to happen. When I run or exercise, I can't breathe easily at all when it turns on. In fact, there are times when I feel like I'm going to pass out because I'm not getting enough oxygen. The positive to this is that I know it will only last 30 seconds. When it turns off, it's like nothing happened.

I've been seeing my Neuro and then also a Ear, Nose, and Throat dr. My Neuro adjusted a setting last week. It gave me some relief in that it doesn't hurt so much when it goes off. I feel like I can speak a little clearer, but at the same time, a weird little thing started happening where I sound like a robot when I talk. That's actually kind of entertaining. I can't breathe any easier and I still feel like I'm going to pass out when I run. They can adjust it down one more time. The ENT doc. did a scope on my vocal chords and said they are paralysed almost completely closed. He wants to do an x-ray to see if it was implanted properly. There is no real plan of action. We are playing everything by ear. All I do know is that if I continue with this, they've told me I will have permanent damage to my vocal chords. I think it's called Vocal Chord Disfunction.

The VNS does so well in controlling my seizures and quite honestly, I would give up talking if it means I don't have to have seizures all the time, but medically, the doctors can't let my throat close up like that. It's too much of a risk. They are worried about my breathing at night and, if it needs to be turned up again, the risk of it closing completely.

Where it effects me most is in teaching. It's hard to teach 50 kids at one time when they can't hear you. It's also already caused seemingly permanent damage to my singing voice. I can't sing high anymore. That also effects my job. I am considering quitting teaching and just going back to teaching private lessons. It's so funny that I can work through my seizures, but end up having to possible quit because of the side effects of the treatment. Seems a little wrong doesn't it?

Just FYI- I'm still really optimistic. I'm not giving up hope. I'm a pretty strong gal and can take it. When they tell me it has to be removed is when I will probably lose it. Going back to square one is going to be hard for me but I'm gearing up for it so that I won't be shocked if it happens. I'm just going to keep doing what I do. I can either be really upset about it or be really glad for what I do have.