Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

May or May Not get VNS. PLEASE HELP WITH YOUR THOUGHTS!

Mon, 04/08/2013 - 10:23

I'll try to keep this short...I had brain surgery 2 years ago (had part of my front, left, temporal lobe removed). Prior to my surgery, I had around 70 recorded seizures (I'm guessing I had unrecorded seizures as well, but I don't know). Most of my seizures were peti-mal (sp?). Although, I did have a few grand-mal. I know 70 seizures per yeare are not a lot for some people - I know one girl who had hundreds per DAY (but stopped altogther when she got her vns in December of 2012) - but 70 seizures per year were a lot for me and really changed my life (in a negative way). After surgery, I've had around 30 seizures (over 2 years, so about 15 per year, give or take). My seizure doc says I still qualify for a vns and I'm seriously considering it. HOWEVER, I really need to hear the pros and cons. I've heard nothing but good things from the people I know who have a vns. Here are the pros and cons I've heard thus far:

Cons:

- May (or will) add shortness of breath

***I'm an avid runner (20 - 30 miles per week), so this could be a very bad thing

- May (or will) make voice change- pretty much a given

- May (or will) cause depression

- May (or will) not have any changes to seizures

- May (or will) cause internal bleeding - which is a very low percentage ( 1- 2%), but still a possibility.

***AM I MISSING ANY CONS???

Pros:

- May (or will) lesson/stop seizures from happening

- May (or will) change overall "mood" in a good way - lift depression

***AM I MISSING ANY PROS??? 

Again, I'm only having around 15 seizures per year, so this surgery may not be worth it. However, if (and that's a "big if") it prevents one seizure and raises my mood it almost seems worth it. I know medicine/surgery varies per person. I'm just looking for the overal pros/cons from people who have had VNS implanted. Any and all replies are GREATLY appreciated!!!

Thanks and God bless!

Peyton

 

 

 

 

 

 

 

 

 

Comments

Re: May or May Not get VNS. PLEASE HELP WITH YOUR THOUGHTS!

Submitted by JLitz on Mon, 2013-04-08 - 17:04
Personally, I wouldn't get a vns with that number of seizures, but it is between you and your doctor. I have one and think it is great, but I did not find that it helped depression, although my seizures were helped a lot. However, I was having several a day prior to VNS, and now have 12-20 a month with the vns. The side effects aren't too bad, but occasionally I choke if I drink then it goes off.

Re: May or May Not get VNS. PLEASE HELP WITH YOUR THOUGHTS!

Submitted by peytonwelch on Tue, 2013-04-09 - 09:30
Thanks for your honesty. It's such a hard decision. Any other websites you reccommend re: the side affects of VNS? And congrats on VNS helping you.

Re: May or May Not get VNS. PLEASE HELP WITH YOUR THOUGHTS!

Submitted by JLitz on Sat, 2013-04-13 - 03:03
One other side effect I should mention is that sometimes when it goes off I can feel tingling in my neck/side of my face.  Not really painful, but really annoying.  I'm at a pretty high setting though.  As far as websites, I'm not real sure, I do know that I listened in on a call that was headed by someone who had a VNS prior to getting the device.  Cybertronics is the company that makes the device and I'm certain they have info on their website.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.