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peytonwelch

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

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!

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!

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!

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.

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

Hi there, I am going to advocate on the "pro" side of the VNS question

I have about 4 complex partial seizures per month, much fewer than most who get the implant.

 I had a VNS implanted about 2 months ago and "turned on" about 1 month ago.  The cycle set for me is to "stimulate" for 30 seconds, and then turn off for 3 minutes.  That is all day every day.  When they initially turned it on my voice was reduced to a whisper for the 30 seconds when the VNS was in active mode.  Needless to say, very distracting and annoying.  That lasted 2 days.  I didn't get the other pain or tingling sensations that others experience.  After those two days I didn't really notice it anymore until yesterday.

Yesterday my doctor turned up the stimulator from .25 to .5 milli-amps, and now the whisper-voice has returned.  I haven't seen a difference in seizure frequency or intensity over the last month, but from what I hear and have read, results take a while to come around, and full intensity is 1.5 milli-amps.  Patience is definitely necessary when going into this.

 I don't know if you have heard about the magnet that comes with the VNS.  If you place it over the stimulator in your chest it sends an immediate impulse to the nerve which in some people alleviates the intensity.  Again, I haven't seen a difference in my own seizures, but it is something to look into.

 Looking at your list of pro's and con's, I see that you have depression listed as a possible side effect.  I don't think that happens very often.  They use the VNS on people with depression to increase positive mood, so don't get too caught up on that.

I think of larger concern are the tingling pain/headache some people experience, but luckily I have not experienced that yet.

The main con that I am worried about is that there will be absolutely no change is seizures, and this surgery was all for nothing.  However, that was not a good enough reason to not give it a shot...

Good luck with whatever you choose!