Epilepsy Foundation

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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: 141
Latest Activity: yesterday

Discussion Forum

Laryngospasm

Started by Cynthia. Last reply by slcuneo Nov 27. 1 Reply

Does anyone have larynx spasms?  Occasionally I have short spells where I feel like I totally cannot breathe and getting air in my lungs sounds terrible.  I've done some research online, and i think…Continue

Battery Replacement

Started by Cynthia. Last reply by Nancy Young Sep 18. 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

Comment Wall

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Comment by Jonelle Godfrey yesterday

I had the VNS implanted the week before Thanksgiving.  I started seeing double really bad.  Does any one know if this is a side affect to it.

Thanks,

Jonelle

Comment by Tammi Zavardino on November 17, 2014 at 11:20pm

Jonelle

The very thought of having this surgery done scared me to death and it took about two years to decide to have it done but it did make a big difference in my life and when I first had it put in they kept me a day or two to make sure all was ok but now they put it in and your out in a couple hours. What terrifies me the most is having to keep going back and getting the battery changed even though it is 5 to seven years in between. most people don't feel the device when it goes off but others you can tell every time it goes off because it will make their voice change. I don't have aura's so I can't use the magnet so friends were given magnets to use if any problems occur however I have not needed that for some time. Mine is set on a very low setting and I still have to take medicines but am much better now than I was before so don't let anything about this operation scare you and I hope it helps you as much as it has many I deal with. What can you lose if it helps? Just stay calm and all will go fine.

Comment by Don Simmons on November 16, 2014 at 2:36pm

Just the word "surgery" can invoke fear in many people, regardless of how minor the surgery is.  This is not unusual.  VNS surgery is a rather simple operation, that can be done on a "out-patient" basis.  Most neurologist recommends the installation process be done by a neurosurgeon known by the neuro.  The vns  stimulator is installed in the upper left chest area, and attached to the vagus nerve in the neck.  This procedure can be done in a couple of hours.  There is very little pain involved after the surgery.  In most cases you are then sent to recovery for about an hour or so.  They will give you a magnet or two, and then released to go home. 

You will then visit your neuro after a week to ten days...this allows for  complete healing time.  Your neuro will then set the timing and strength on the stimulator.  In most cases the stimulator runs for 30 seconds at the required time set by the neuro.  You will not feel it run after a very short time.  The stimulator has a battery in it that lasts 3 to 7 years, depending on how many seizures you have.  After installation the stimulator will run automatically after setting. 

Keep a record of seizures to show the doc on your reg. visits.  This will help him decide rather or not to increase strength or shorten time.  The magnet you will carry with you at all times, to activate the stimulator in case needed.  A simple swipe across the stimulator with the magnet activates it in between times of normal operation. 

The vns is an added feature to lessen the seizures.  You will probably still be on medication also, but it could be decreased somewhat, depending upon how well you are doing on the vns. 

For most people, the only side effects noticed will be some hoarseness while the stimulator is running.  And much of that will subside as you adjust to the setting.  Go with what you know, and not what you fear.

 

Comment by Jonelle Godfrey on November 15, 2014 at 5:50pm

Hi, I'm having the VNS coming up.  I was wondering how to prepare for it.

Thanks.

Jonelle

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

 
 
 

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