VNS question

Re: VNS question

Submitted by llora428j on Mon, 2013-09-23 - 15:47

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

Submitted by cjrrlammert0312 on Tue, 2013-09-24 - 00:31

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.

Aloha,

Submitted by UH_Warrior13 on Tue, 2014-04-01 - 21:57

Aloha, I have the VNS as well. I got my first implant on Sept 20 of 07, then it was replaced on August 25 of 10. I started responding to it at 2 months. Not every hospital keeps people over night for observation. Mine did not. I was sent home the same day. A 50 minutes surgery under G/A, and sent home after an hr and a half in recovery. A lot of Morphine in my system so After I got in there they gave me 5 shots and I could tolerate it well enough to get dressed in the bathroom with a RN with me, I fly into the mainland to see my neuro on April 22 and he wans to put me on a new med that comes out on the 7th of april, Anyway, I also have a service dog that I have had for a year. Her name is Fly and she is a 2 yr old Border Collie. Even after I have swiped myself she leans into my left leg hard and puts her left paw on my left foot to tell me I am going to have a sz, then I have about 30 seconds to find the floor. I have complex Partial szs but sometimes they can generalize afterwards. The VNS is a GREAT device and I encourage you to get it. It is etiher szs or a possibilllty of eliminating some of them, I used to have 10-12 a day every day all the time. My recovery time was at least 30-45 minutes. now down to 20. My settings were changed from 5 minutes OFF and 20 minutes ON to 1.8 minutes OFF and 21 minutes on.so it runs more all the time the cycle is sped up and it rund more frewuntly, All together I have my VNS almost 7 years. I am an ambassador for Cyberonics and volunteer under the senior rep for the city and area of Honolulu where I live. I help people decide if they are going to make the decicioun after they have talked to their doc about it, talk to those of you who are still sitting on the fence,talking in geneal about it to you and ansering questions, etc. IIT is fun. Nancy