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

How it feels to TURN ME ON

Today was the magical day!  I got my Vagus Nerve Stimulator turned on.  Wait…. that title… of course I was referring to my VNS.  Get your mind out of the gutter!

I was really excited, and a little bit nervous, for my appointment.  I did a ton of research prior to getting my VNS and I knew about all of the possibilities when it was turned on.  I knew about the many things that people reported, but it’s not the same for everyone.  Even though I knew that it would likely impact my voice, I had no idea how it would actually feel or what the impact would be.

 

We went in for my appointment, and it was probably the fastest Doctor’s appointment I’ve ever had.  And for once I didn’t leave in tears!  Programming the device is so easy.  They simply just put a wand over your chest and then once the wand detects the device they can then use a program on an iPad to set the timing and frequency of the device.  That took like 30 seconds.  The longest part of the appointment was when we made small talk long enough for the device to go off 3 times to ensure I was going to be ok with it.  Mine is set currently at a really low entry level.  It goes off every 5 minutes for 30 seconds at a .25 frequency.  We will increase the levels and the increments every two weeks until we find a therapeutic level.

So how does it feel?  Really weird mostly.  When we were in the office I actually could barely tell the times that it went off.  My throat has been feeling rather swollen from the surgery and mostly I just felt tightening or pressure in my throat.  When we left and got in the car, I got out my magnet to make sure that it was working.  The magnet is what you swipe across your chest if you feel a seizure coming on or someone else can swipe it across if you are having a seizure and it will trigger the device to go off.  As soon as I swiped it across I must have had a look of sheer terror in my eyes because Damion and Caty looked really freaked out.  I was a little freaked out because as soon as I swiped it my whole throat began to close in.  I don’t actually think that I attempted to speak at that time as I was just too spooked.  After about 30 seconds the rope around my throat let go and I saw that everything was ok.  When I got home I did it again except that time I knew what to expect.  When I tried to speak during the “event” nothing would really come out. If I tried to speak even louder there was a tickle in my throat and my voice did this tiny little vibrato thing.  I wouldn’t call it raspy, I wouldn’t call it hoarse… I think I would just call it weird.

I look forward to seeing how this does.  It is certainly manageable right now as I can barely feel when it goes off when not provoked by the magnet.  Ideally we would like to get it to around 2.5-3 at 3 minute intervals for 1 minute each.  That can take quite awhile to get there.  I’m fine taking baby steps for something that could potentially change my life as I currently know it.

 For those wondering how I am healing, it is definitely getting much better!  The incision on my neck is understandably still quite swollen and isn’t healing as well as the one on my chest.  I am happy with the progress, however.  I looks WAY better than it did two weeks ago.  It feels actually like it’s been much longer than two weeks since I had my surgery!  I was really worried about scarring, so I’ve been doing my part to try to prevent them as much as I can.  A few things that have worked well for me….

COCONUT OIL!!! I use Coconut Oil for my skin, hair, and cooking. It worked wonders to help me get all the surgical glue off of my body and keeps my skin nourished so it can heal.

I love these SCAR AWAY SHEETS. I’ve used these quite a bit on other scars in the past too from skin cancer removal and they are great.

MEDERMA PM. I’ve used Mederma before as well and was quite pleased. I bought this PM version this time and it has been working well.

And finally, I haven’t tried this SCAR GEL but I have gotten some great recommendations from people who battle keloids. It’s in my Amazon wish list JUST IN CASE!