Nervous about surgery.

Solopach

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Hi, so my neurologist has decided that I should pursue VNS surgery, since previous treatment methods aren't working consistently.

As for the actual surgery, that is getting cut open and all, I'm not bothered at all, the neurocenter here has some of the best surgeons in the world, and I'm related to two of them.

What has me nervous is the repercussions; if the VNS device is successful, that will mean I can really live my life again. Not dependent on medications, waking up in emergency rooms at random, not terrifying my girlfriend at the sight of me thrashing around on the floor. No more torn muscles, broken bones, cracked ribs. Perhaps most importantly, no more worrying about my memory deteriorating further.

I admit, I've become complacent. I'm used to living a boring life that consists mainly of drawing comic commissions for people, fixing up my house, writing software, etc. If I'm not dependent on those things anymore I'll be able to take on responsibilities again like driving a car. I haven't been behind a wheel in over a decade. It's, well, kind of scary.

Is this a rational fear?
 

Frink

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After living with seizures for a long time, putting hope in different doctors and medications only to get no relief, you start to adapt to your new life and grudgingly accept that this is how life will be.

Now here comes something waving hope in your face again, sure surgery is not a big issue but what comes after? Will this help or not? Will I get my life back or not? Will I be able to drive, work, or even just go wherever I want to? Will it help or am I putting my faith in some false hope only to have the carpet pulled out from under me again?

Having a little fear or a lot of questions around this decision seems rational and totally normal.
 

masterjen

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Hi, Solopach and welcome to CWE,

I've never had VNS surgery nor I am a candidate, but to me your fears are very rational. Although your life has become severely restricted due to seizures and medication side effects, it is a life you have, in a sense, become used to and any kind of change is scary. Add to that the fear of surgery in general! So, your uneasiness is completely understandable :)
 

valeriedl

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I had a VNS put in 10 years ago, 3 years after I was diagnosed with epilepsy. It has helped me A LOT.

I am still having seizures. Before I had it put in I was having almost 1 seizure a day. They were either simple partials, complex partials or grand mals. Since I've had it put in I'm having on average 5 seizures a month. Mostly only simple and complex partials but I do have about 3 grand mals a year.

I'm also talking A LOT less meds. We were having trouble finding meds that worked in general and the ones I was taking were of very high dosages which is why my neuro suggested I get the VNS.

As long as I can feel the seizure coming on, by having a simple partial, I can usually stop it from going into a stronger seizure if I use the magnet. I don't always have a simple partial before the complex partial or grand mal but if someone uses it on me while I'm having a complex or grand mal it will bring me out of the seizure quickly.

There are a few side effects, if that's what you want to call them, from the VNS. You will probably have a tingle in your throat when the VNS goes off when you first get it and when the strength is increased but you will probably get used to it and not even notice it after about a week. Your voice might change slightly, probably nothing that's going to be noticeable. You may also have shortness of breath. I notice that I can't talk or sing for long like I used before I had it put in because I have to take a breath. When my VNS was at a very high level I was having severe shortness of breath. I felt like I had just ran up a hill and was gasping for breath all the time. We reduced the strength of the VNS and that went away. One major problems I've have since I got it is burping. They aren't just little burps they are more like lion roars.

Everyone is different when it comes to the VNS though, just like meds. They might not have to take meds or it could stop the seizures. There are some people who it hasn't helped at all.

If you have the VNS put in and it isn't helping you can't have it removed, only turned off. You are also unable to have an MRI once you have it put in because there will be metal in your body.

Good luck!
 

Music36

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Solopach,

Your feelings are normal. I don't have a VNS. But, I had laser ablation surgery last year on my left temporal lobe. My left Hippocampus and Amygdala were removed. I am 48 years old and have never been able to drive. I always had to depend on others or use public transportation. I have had thoughts about the freedom of driving and how much it could change my life, but the thought of driving is scary. Anyways, I have had many auras since surgery and my aura is intense fear. Fortunately, the auras have greatly decreased as my brain has continued to heal from surgery.
 
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Cint

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What has me nervous is the repercussions; if the VNS device is successful, that will mean I can really live my life again. Not dependent on medications, waking up in emergency rooms at random, not terrifying my girlfriend at the sight of me thrashing around on the floor. No more torn muscles, broken bones, cracked ribs. Perhaps most importantly, no more worrying about my memory deteriorating further.

I admit, I've become complacent. I'm used to living a boring life that consists mainly of drawing comic commissions for people, fixing up my house, writing software, etc. If I'm not dependent on those things anymore I'll be able to take on responsibilities again like driving a car. I haven't been behind a wheel in over a decade. It's, well, kind of scary.

Is this a rational fear?
Solopach,

Imo, fear is rational. But have you REALLY studied the VNS? Or other surgeries? I had a Left Temporal Lobectomy and was only seizures free for 14 months. The seizures came back much worse than before surgery!! More TC seizures, thrashing around at home and in public!! Then we tried 12 more meds, to no avail. Now I have the VNS. I had my 1st VNS surgery back in 1997. I've had two replacement battery surgeries done. I have not been totally seizure-free, but it has stopped my TC seizures. I still have CPs. I have totally given up my driving privileges because of two accidents I had since I had my VNS. I would not want to be in another one and end up killing someone.

Just so you know, the VNS is NOT a cure-all. My VNS is at the highest setting and my voice sounds like someone crying every 7 seconds. Some folks cannot handle that, they refuse to speak when it fires. It also makes it difficult to breathe on some windy days. Sort of like asthma patients. Lots of side effects to beware of. I hope you checked it all out on the cyberonics website.

http://us.livanova.cyberonics.com/vns-therapy/how-vns-therapy-works
 
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