I made the choice to get the VNS implant in early April of 2010, and it was implanted on May 5th, 2010. It all happened so fast that I hardly had time to sit down and think about my choice. It was either that, or a somewhat risky brain surgery - which I honestly did not like the idea of. So I immediately said "I'll take the VNS" to avoid the possibility of the other procedure.
Recovery what somewhat awful, due to my reaction to the anesthesia. I have always been sensitive to medications; whether they be simple pain killers, or AED's (antiepileptic drugs). I was vomiting and vomiting for 6 days straight, and I didn't eat anything more than a few crackers with a few glasses of water. To be totally honest... From my perspective, that wasn't the worst part of the VNS surgery.
The scars healed up quite quickly. Of course it took time, but they healed faster than most cuts as far as on the outside. They are still healing on the inside to this very day, and the areas hurt quite a bit on the daily. The scar on my neck never really "went down," and is still swollen. It looks like some sort of worm is living in my neck!
The hardest part of the surgery was when the device got turned on. The doctors weren't kidding when they said I probably would never be able to sing again. Singing is something that meant a lot to me, and still does today. I never wanted to be professional, but I loved the sound of my voice. My father is a wonderful singer, which is where I probably inherited that talent.
After my device was turned on, my voice changed - and it changed for good. I still speak quite raspy and unclear compared to how I used to talk prior to the surgery, and singing is near impossible. My singing voice is somewhat normal for about 15-30 seconds or so before it sounds like chicken scratch. I figured that after a while this would all change, but I'm sad to say it hasn't.
Every month things got better as far as the discomfort while the device is "active" or transmitting electrical impulses to the vagus nerve. At first it really hurt, and I was wondering if my choice to get the implant was a mistake. But over time the discomfort has faded for the most part. Some days I have this strong urge to grab hold of my neck because I feel like I am choking or can't breathe, but it doesn't last for long. It's something you get used to over time.
After having my device turned on for 6 months, I started to notice a major decrease in all of my seizures. I still had quite a lot of simple partial seizures, but the grand mals and complex partial seizures completely disappeared. The only time I got close to having one would be if I forgot my medication that day, but even then, a quick swipe of the magnet over my chest would stop me from going into a full seizure.
I will be honest with you all - I still don't feel 100% safe when I'm alone. I refuse to stay home alone for extended periods of time, and I carry my emergency Lorazepam with me wherever I go. My magnet is always attached to my wrist or keychain, and you wont even find me at the mall solo. I use the buddy system at all times.
Yes, at the 8 month point, the VNS had greatly decreased my seizures - but I still had not gotten over that fear or having one. Mostly because after 8 months my seizures once again increased. I don't know the reason for this, except that maybe I have a lack of sleep from time to time. Sometimes I sleep only 3 hours a day, and sometimes I don't sleep for 2 days at a time. I spoke about my insomnia a few times in other articles, so you probably already know that story.
The insomnia has seemed to actually have gotten worse with the VNS. I had a slight sleeping problem before I ever got the device implanted, but now that my VNS has been with me for a while I have been having extreme insomnia that comes and goes. It usually lasts about 2 weeks at a time, goes away for one or two weeks, and then returns. In one case I had extreme insomnia for 2 whole months.
I have been taking a hormone supplement called Melatonin to help me fall asleep. It hasn't been 100% successful, but it has made my life a lot easier. I can now go to sleep by 3am at the latest if I take Melatonin around 11:00pm. Before the 6 month point I was taking Seroquel, which is why I'm guessing I never experienced too much sleeping issues.
One of the most interesting side effects (which I just learned about an hour ago from another person with a VNS device) is sleep apnea. As soon as I fall asleep I start to make an awkward, monotone hum. Almost as if I'm singing in my sleep. It's very strange, and can get quite annoying to those around me. I used to love sleeping in my little sister's room, but she will no longer let me due to this issue. This side effect started about 5 months ago and has not stopped ever since that time.
Some of you may be reading this article thinking that the VNS is just "bad news" all-around. But I'm here to tell you that although it has been a struggle for me, the VNS device has made it possible for me to be my age again. There was a time when you would think I was 80 years old. Always staying at home, reading books and avoiding the outside world. I never went out with friends, always said no to parties, and couldn't even make it an hour in school.
This past year I was able to go to school for 3-8 hours a week, hang out with my friends, go to parties, and have fun again. I have successfully made over 60 pieces of artwork; many of which I have donated, but I have sold a few as of this past month. I can literally sit down and paint for hours without getting exhausted or going into a seizure.
The VNS device has given me my life back. Although I have several small seizures a day, they are easy to shake off and can easily be stopped right in their tracks with the swipe of a small magnet. And, yes, the side effects took some getting used to - they are still taking some getting used to! But I couldn't be more happy, and more thankful for what this device has done for me.
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I also want to take the time to thank all of you for all the feedback via e-mail! I have enjoyed reading all of your letters and I am getting back to you all as soon as I can. I never thought this blog would get as far as it has gotten, but God has blessed me with some awesome readers from all over the world. I want to give a special shout out to all of you in Belize, South Korea, and Malaysia for all of the views and letters. God bless you all!
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I just want to take the time to let you know that you are an amazing girl. It takes a lot to share an illness with a friend, let alone the entire world via the internet. You are so open and honest in all of your blogs, and that is something I really admire about you.
ReplyDeleteI saw on twitter that you were looking for stories about first seizures. I hope it is okay if I share mine right here on Blogger.
When I was 9 years old I was taken to a birthday party - for whom, I cannot remember. It was a friend of a friend of a friend type thing. I was sitting next to this little girl that I knew from school, and we were laughing and playing and talking about everything you could imagine. I still remember the huge crush I had on her to this very day.
She leaned in towards me (either to kiss me or tell me a secret, I guess I'll never know) and I just dropped to the floor right into a grand mal.
Next thing I knew I was awake in the ER, drowsy like I had just come home from the dentist. I tried to scream and cry but nothing would come out of my mouth. Finally, after a while I was able to talk but I decided (being a child...) that I should just scream for half an hour; and I did just that.
- Andrew C.
New Mexico