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luv_night_life

VNS question

I am thinking now of getting the vns and have some questions.  I've already had a right temporal lobectomy about five years ago and it didn't work and I feel getting the vns might help.  I really don't want another brain surgery.  Has anyone had any problems with the vns?  Has it stopped anyone from having seizures?  I always feel my seizures coming on and I think this might help.  So does it stop the seizure when you feel an aura?  Do you get any pains or discomfort from it?  How many people have gotten it and it didn't work and how many people have gotten it and it helps them a lot?

I know so many questions, but I need to know before I start considering this.  I feel ready, but would like to know more from someone who already has one.

 

Thanks,

Nicole  

Comments

Re: VNS question

 My neuro hassaid several things abou the VNS. It is basically a pace maker for the vagus nurve which controls the electrical impulses in the brain. Some people have goten it and it does work for many epileptics.

Go to your search engin be it google or bing and type in V N S and you can read about it. I did and there is a lot of information there. being an implant if you travil you should not be scaned.

I did not get the procedure because in my seizures I can't move. So the procedure which  envolves moving to the wrist band would not work because I can not move during my seizures. I will be checking to see if there have been any advances in it during my next visit.

New medications are getting better in stoping hte electrical impulses. The medications I am on have shortened the length of time I am in the seizure. They have also reduced the time it takes to get back to normal.

I hope you get the information you are wanting, You might start a seizure diary because the more information your neuro has the more options he has to get you seizure free. The diary can be found near the top of this page under My Epilepsy Diary. There is a place for notes and I use it to note the time I am in the seizure and the time it takes to get back to normal. I also not what I think could have caused or triggered the seizure. What some people do not know is that information is helpful. Many things can trigger seizures heat, stress just being sick can and does in many people.

Hope this helps some

 good luck and I hope you get seizure free

Re: VNS question

I had one implanted in me but it did not work.It had several side effects that were not good , like a soar trought, and it changed my voice tone but maybe it can work for you

Re: VNS question

Hey. First, don't ever feel bad about asking so many questions. The more you ask, the more informed you'll be.

I just had the VNS implanted in me about a month ago and it's working fantastically. I have simple-partial seizures (jerks and twitches in my left leg). In November of 2011 I had a right frontal lobe resection, which also worked very well. I used to get a significant amount of twitches and jerks before the surgery; post-surgery, they decreased. Post VNS; I literally have none at all, and I don't have any jerks (maybe one or two every now and then, but that's nothing).

VNS works like this: it helps all patients, some patients, or no patients (which is horrible). I still have some infrequent twitches, but hardly any jerks since the surgery, like I said above. After the surgery, you go to your doctor and they test the level your disc (what looks like a pacemaker inside your chest) with what they call a magic wand. With me, and I'm assuming everyone who has the VNS, they discuss the frequency of the seizures and other factors. The doctor either increases or possibly (which would be awesome) decreases the volume of your VNS. The major side effect is a sore throat and coughing. As you increase, at least with me, the side effects increase. I'm pretty stubborn and want to keep going higher because I want to eliminate all twitches, even though I hardly get any. Each doctor works differently. My doctor, Dr. Michael Smith, has me at 2.0 right now. The highest of his patients is at 3.5 if I'm remembering correctly. My side effects are basically gone and I just saw my NP (who does the monitoring) a couple weeks ago. Two weeks? That's nothing, especially because I "made" her go up so high. It's increased relatively slowly to see how it's working for you, just like medicine, and also that the side affects aren't harming you.

I talked with my NP before getting the VNS and she told me a patient of her's and Dr. Smith had grand mal seizures for years. Nothing worked. She got the VNS surgery and now she's basically seizure free. If you have grand mal (and I used to, so I know what you're going through, and it's not the greatest to say the least), I *strongly* urge you to get the VNS surgery. It only takes two hours, you spend one night for observation (at least that's how they do it at Rush, and I'm sure it's like that everywhere) and then recovery is a breeze. I bounce back fast, but I would assume for anyone it's not bad. Yeah, the VNS doesn't work for some patients, but it does for others. So why not? I really hope you decide to get the surgery, and if so, let us know how you're doing post-surgery. Stay well and good luck.

Re: VNS question

Also, I forgot to address having a second brain surgery. Having a second brain surgery can usually cause more harm than good. So keep that in mind of you're thinking of having another surgery.

Re: VNS question

I suffer from grand mal seizures but have no warning. The VNS was suggested for me as medication was not controlling my seizures. I had one for about 11 months before I insisted they took the box out (the wiring becomes too embedded). It did not help me in any way. The strength was progressively increased along with the frequency of the pulses. I experienced a dry throat sensation and a slight twitch toward the end because it was turned up so high. I believe your idea about the aura helping it work will be something to ask about because mine was just applied continually (my seizures are very random and unpredictable) and just felt unpleasant.

Re: VNS question

My doctor suggested the VNS therapy today at my 6 month visit. Over the past year I have tried new medications to control my seizures. I tried Vimpat, a new drug which was supposed to work wonders, along with starting back on Neurontin. This was added to the Tegretol XR and the Lamotrigine that I started taking the year before. Presently I am on the Tegretol XR, Lamotrigine, and Neurontin. I am still having seizures. I was completely controlled for about 10 years and my doctor started weaning me off of the Neurontin I was on then. I was weaned totally off of Neurontin and some of the Tegretol.

I have simple partial seizures and have an aura for about 10 minutes before I go into a seizure. Has anyone with these type of seizures had good luck with the VNS? How long did it take to recover from the surgery? Does insurance usually pay, my $10,000 has been met for the year. After that it is 100% covered. I am just anxious about having a surgery right now. I just had a procedure where I was put under and had a feeling like I was going to have a seizure beforehand and had a seizure after I came out. I have never done that before. Would love some input on others' experience before I attempt this procedure.

Llora

Re: VNS question

I have had my vns device in now for 3 years and the only downfall is that I loved to sing reguardless how good I was I enjoyed it now it just changes my voice every 5 mins. when it stimulates the nerve but it always goes back and it is something I am so happy to live with considering I only have had a max of 2 seizures a year. I still have the auras but nothing compared to what it was before and the doctor says as I increase the stimulation on the device I may be able to back off the meds. My advice is too go with your gut feeling on placing it but it has worked wonders for me and my family and finally at peace. Good luck hope this helps.