VNS 2 Month Anniversary

Three days from now will officially my mark 2 month anniversary of my VNS implant. That means I’ve had it turned on for 6 weeks and had it adjusted three times since. I have two big and not so beautiful keloid scars to remind me of this journey I’ve been on. I have this bizarre giant bruise on my chest that I hope isn’t permanent. And I have serious hope that this thing is going to work. A lot of people ask me how it’s working. I will have no idea for many more months because it’s not even remotely set to therapeutic levels yet. But I’m hanging on the the hope that one day I can celebrate being seizure free.

For anyone out there considering this surgery… or for anyone else wondering what this is like… here are my experiences so far broken down by the good and the bad.

The Good

• Healing time was considerably fast. The pain was manageable and the incisions closed fast. I mean… I did have my throat and my chest sliced open. Of course it sucked, but I really imagined that it would be worse.
• Outpatient surgery! I was in the hospital at 6 am and outta there 12 hours later. I really don’t dig hospitals so I was happy to have a short stay!
• People are always really fascinated to hear about this cool device in my body, and I’m always so excited to spread the word! I really wish I had known about this years ago and I think that there isn’t enough knowledge out there about it.
• You get special treatment through security lines. As soon as you tell them you have a magnet implanted in your body and show them your fancy medical card you get rushed through the line like a true VIP. They NEVER know exactly what it is that you have in there, but they know they don’t want to mess with it either way!
• I have something to believe in again… some kind of hope that things are going to get better. I haven’t had that kind of hope in a long time.

The Bad

• I scar easily and it’s not pretty. I could tell immediately that the incision on my neck was going to form a keloid. I could feel the tissue hardening as soon as the bandages came off. The one on my chest was looking really good at first and then it’s like it just stopped healing.
• Where the magnet is implanted in my chest I have begun getting this really intense bruise on my skin. At first I thought it was just part of the healing. Now I can not help but wonder if when I use my magnet over the device if the strength of the magnets together are causing this bruise. If so, I suppose I’ll just have it for life. My neurologist told me she had not ever really seen that happen to anyone, but I’m accustomed to being an anomaly.

• My VNS also has a heart rate sensor. Since your heart rate either dramatically increases or decreases during a seizure (depending on the type) then it automatically begins going off upon detection of a spike in heart rate. So this means that if you are exercising or doing anything causing a spike in your heart rate that it shoots the impulses and doesn’t really stop until you either manually stop it by holding your magnet over it or your heart rate goes down. Damion says he always knows when I’m mad because my voice starts changing a lot.
• As for the voice thing… it happens. It sort of sounds like talking through a fan when it goes off and your throat clenches up so you get short of breath when talking or doing anything. If I’m on the phone and talking to someone when it happens they’ll start to say “I can’t hear you… you’re breaking up”.
• It takes a LOT OF PATIENCE! This isn’t a miracle cure. It doesn’t work for everyone. After the surgery there’s a long way to go before getting the settings right and then it’s no guarantee you can come off of meds. You become besties with your doctors office if you weren’t already because you have to go in every two weeks for quite some time to get it adjusted. Every time it gets adjusted and gets stronger your throat hurts for days and it can be a little painful. You just have to be strong and be patient and know that it’s all for a good cause.

Even the “bad” isn’t actually so bad. Scarring and bruising? Yeah, that’s kind of been my life since I’ve been having the tonic clonic seizures so frequently. What’s a few more??? My dermatologist did give me a prescription for this badass gel, Recedo, to put on my scars. I just started using it this last week so we will see how it works!

The whole voice and breath thing… luckily for have learned how to use my magnet to my advantage. The wrist magnet can be swiped across your chest to make it send a signal if you need it to, like if you can sense a seizure onset or during a seizure a witness to the seizure can swipe it over to potentially stop or slow down the seizure. But… if you just hold the magnet there for an extended time it will temporarily turn your VNS off. I try to use mine accordingly so if I start running out of breath or if I’m talking to someone and it begins going off and becomes troublesome, I just use my wrist magnet to control it!

The wrist band that comes with the magnet is pretty boring so I started making my own. I then decided to open a little Etsy shop and sell on Amazon with the hope of helping others. I’ve sold a few bands so far. I’m not really making money on them but it makes me feel good to know I may make someone else happy with something simple. Caty and I make them in our own little workshop upstairs. It gives us our own special time together too.

These are the bands I am selling on Amazon. Lots of great prints and patterns! Makes wearing that chunky magnet more fun!

My Little Amazon Shop