Epilepsy Foundation

Information

VNS Therapy

VNS (Vagus Nerve Stimulation) Therapy is a non-drug treatment for epilepsy and depression. A pace-maker device is transplanted in the left chest cavity

Info: Cyberonics.com

Members: 140
Latest Activity: on Thursday

Discussion Forum

Battery Replacement

Started by Cynthia. Last reply by Nancy Young on Thursday. 22 Replies

July 2013 is my 5-year anniversary of the implantation, and I'm starting to wonder about battery replacement.  If anyone has had the battery replaced, could you answer the following quesitons for…Continue

VNS Questions

Started by Sheri Romero. Last reply by Nancy Young Aug 12. 43 Replies

Hi I am new to this group and looking for any information on VNS (good or bad experiences). Our doctor has recommended this for my 7 year old son who has intractable epilepsy with partial complex…Continue

Effectiveness of VNS for someone who has infrequent seizures

Started by Melissa. Last reply by Tom Jun 8. 14 Replies

Please help -- my 29 year old son is scheduled to have the VNS implanted this week. We have so many concerns. Our question is our son has a seizure every three to four weeks. It seems as if most…Continue

DOES ANYONE REGRET HAVING THE VNS DONE?????!!!!

Started by Darcy Andahl. Last reply by Don Simmons Jan 21. 8 Replies

Hi everyone,I wrote this title because I need your feedback/advice please!!!I had the vns done in December 2006.They told me that I could cut my medications in half.So I thought that would be…Continue

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Comment by Craig on July 22, 2014 at 12:29pm
I have been addressing epilepsy for 40 years, visited numerous epilepsy centers across the continent, tried most all the meds, had two partial resections, and after having the VNS implanted, problems only became worse. It's a very dangerous device developed by a corporation that has been taken to court. The representative won't tell you about the number of patients who have died because of it. I strongly recommend looking elsewhere. No matter what others say, having a foreign object, made by a corrupt corporation, implanted into your body is a bad idea.
Comment by Tammi Zavardino on May 29, 2014 at 11:38pm

Jonelle hope this helped you understand more about this and think about it because it does help even if you don't get off all your meds I still have to take some meds but was worth it.

Comment by Jonelle Godfrey on May 28, 2014 at 3:06pm

Ericsmom and Tammi- Thank you so much that helped a lot!

Jonelle

Comment by Ericsmom on May 28, 2014 at 9:00am

@Jonelle - our 20 y/o son began VNS therapy Sept, 2009 and is on his 2nd VNS.  As Tammi stated it cycles off and on (like AC) as determined beneficial by your epileptologist or neurologist.  Because of the settings on Eric's it is replaced every couple years.  I have read some recipients are able to cut back or completely get off their sz meds.  This isn't our case.  Eric still takes 3 sz meds with the VNS.  It depends on the person. 

The battery(generator) is implanted in the left side of your chest. It is only maybe 2" long and maybe an 1.5" wide and is straight on the sides with the ends rounded.  The incision is about an inch long.  If I push on Eric's chest I can feel it.  There is only one vagus nerve in everybody's body and it is on the left side of your neck.  The leads (reminded me of fishing line) that are attached to the generator are wrapped around your vagus nerve through a tiny (>.25") incision on the left side of your neck towards the bottom.  It's barely visible after healing.

Eric will receive #3 next month...because his battery is so low his sz activity has been creeping up but I would hate to see what state he would be in if we didn't have the VNS!  Obviously it works for us to be getting a third in less than 5 years.

You can go here to learn more: http://epilepsy.med.nyu.edu/diagnosis-treatment/vagus-nerve

Hope this helps and good luck!

Comment by Tammi Zavardino on May 28, 2014 at 12:17am

Jonelle I had tried every medicine there was to take when my doctor suggested the VNS surgery and it really scared me so I took a while to decide to have it done. But am glad I did now because I no longer have Grand Mal seizures and only occasional absence seizures. Some who have it when it goes off it affects their speech but this is something I never had a problem with and others can feel it when it goes off but I don't even when they check it. I would recommend having it done but you have to make the decision. If you would like some more information I can help you with that. The device is connected to your vagus nerve in your neck and heart and depending on the setting it goes off every so often which helps stop seizures from happening. If you get auras which I don't you also get a magnet with it to swipe across the device and it will stop your seizure. I gave magnets to my friends who are around me so they could swipe it if necessary since I don't know when they are going to happen. The battery has to be changed after so many years and although not fun it doesn't hurt and heals so you can hardly tell anything was done. Ask your doctor to tell you more about it if you have more questions and really think about having it done because many have had it done and it works. Take care

Comment by Jonelle Godfrey on May 27, 2014 at 8:43pm

Hi, I after having a lot of seizures this past year my epilepsy specialist told me about VNS.  If it works for you let me know thanks.  Also if you know where I can learn more about it let me know thanks.

Jonelle

Comment by Tammi Zavardino on February 17, 2014 at 10:49pm

Annette I no longer live in Florida or would be happy to come to your meeting. I live in Iowa and do a lot with the Epilepsy foundation here but would love to keep hearing from you.

Comment by Tammi Zavardino on January 29, 2014 at 12:30am

Kathy I go in in two days to have the batteries changed and although I have been through this before its still scary but worth it. Did they change the unit or just the batteries. I know there is a new unit out and wonder if it works better. I take meds also but my life is much better with the VNS because I hardly have any seizures anymore.

Comment by Kathy Laspina on January 24, 2014 at 12:10am

I had my battery changed for my VNS in Sept,wow itis working great ! Not like the first few years when I was still having seizures ,,now no seizures since Sept ,this good for me I was getting 10 a month,My Dr here in Chicago specialize in Vns.I would take it outgo to diff.Dr clinic & see how they can help,I am very happy with my VNS & I still take meds too always will!

Comment by Tammi Zavardino on December 2, 2013 at 12:00am

Craig just like some medicines work for some and not others there are risks in everything! I have had no trouble with the VNS but with many meds. I wish you luck in finding the answer for you.

 
 
 

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