Vagal nerve stimulation - Epilepsy Message Board

lilac_lilly · 04-08-2005, 07:00 PM

Hi!

I am new to this so please be patient. i have grandmaw seizures and i have had them for 10 years now. They have progressively gotten worse until i am now having 3 to 4 a week. I am going to have a surgery to have a Vagal Nerve Stemulator put in to try to control or cut back on the seizures, does anyone have one in or know anything good about this device.Please let me know some good news. thank you.

Travis from MN · 04-09-2005, 05:43 AM

They are willing to implament the VNS for 3-4 seizures per week? I'm suprised. Very suprised.

I know 3 patients with it, one had the very early model, first gen; the others had the second version. The first recently had it replaced due to battery drainage and now has the newer model (102?).

They install a lead (wire contact) up to your neck on the vagus (sp?) nerve. Now they have it so only the contact will remain and they can remove the wire (if needed later on) if I recall the new procedure. Anyway, it's a pretty simple procedure.

It's a small device, I think about 2x2x1/4 now for the 102. After the procedure it remains OFF for a couple of months to let the body heal over the contact on the nerve and adapt to the foreign object being in the chest. Once activated they will SLOWLY and I do mean SLOWLY adjust it to a setting that will end up working for you. This could take 6 months to one year trying to get the setting correct. YOU REMAIN ON YOUR MEDICATIONS. They may be reduced slightly at most.

Often the patients feel a "tickle" in the throat when it cycles on. If they speak when it's on the voice is horse. But not with everybody. If you have a seizure when it is cycled off USE YOUR MAGNET as soon as possible to activate. On the 102 you have to swipe it at an angle to properly activate it. the 101 was across if I recall. Don't lose the magnet! They are spendy to replace. A temp use for a magnet is a "rare earth magnet" It works, it's about the same strength as their magnets, and usually stores that carry them have them in the small sizes. Perfect for emergency replacement. (and we have used it for that!)

This means you cannot go through strong magnetic fields with the VNS, sometimes security. Alert security with the card (wallet card or medallion) when dealing with airport or courtroom security. I don't know if you can go through security or not, but alert the guard or TSA and ASK if it is a magnetic field, then explain.

Hope that helps..

--Travis

lilac_lilly · 04-09-2005, 06:54 PM

thank you ! this stuff is really confusing

,but from what you have told me i understand better now.i really appreciate the advice exspecaily about the security thing. I had not thought about that at all.I was already on three seizure medications that was not controling the seizures which is why this prossess is being done. It was either this or the brain surgery and i did not want to go that far. thank you again for the advice and help.

Phoebe · 04-10-2005, 08:57 AM

My first thought was regarding the question of doing an invasive procedure with only 3-4 seizures a week. My response is YES! If seizures are allowed to continue and are not stopped completely, the disease process does progress. Over time, the seizures worsen, a greater area is involved, the mental abilities can worsen since the misfiring cells teach the healthy cells how to misfire, and quality of life suffers along with it. They have already worsened based on the post and will continue to do so until stopped. That's how it works. Mine did and my quality of life suffered so much. Why wait until your quality of life is much worse rather than fix the problem now before it does further damage that cannot be undone? I also wondered if you being treated by an Epileptologist at a Comprehensive Epilepsy Center or is this a general neuro? A general neuro does not have the training to do any treatments past giving you pills. Very true. There are docs who do have that training though. An Epileptologist will have a Certificate on the wall saying he has completed a Fellowship in Epilepsy or in Neurophysiology. Without that he is not an Epileptologist. Having the VNS implanted is not like getting a tooth filled in that just about any dentist can do it. You do need a doc very well experienced in implanting the VNS successfully to do it. The docs procedure can make a difference from what I read from another with it. I do have another friend who has the VNS, and he has not had a seizure since and takes no meds either. My Epileptologist told me that since I have Complex Partials, the VNS would not give me the degree of seizure decrease that surgery could. It made better sense to me to remove the misfiring sparkplug so to speak rather than implant a device that stops the backfire. I had a Right Anterior Temporal Lobectomy 6.5 yrs ago and do not regret it in the least! Not all people are candidates for surgery and the VNS may be best for them. You do have to do your homework and make sure you are at a Comprehensive Epilepsy Center and that the doc has done this numerous times before. The Gamma Knife is now available too, but that too takes a very well experienced neurosurgeon to do. You may want to fully discuss all of the options your Epileptologist suggests so you can make the best decision. You have homework to do. First step is making sure you are being treated by an Epileptologist at a Comprehensive Epilepsy Center that has a good track record based on the opinions of the patients who have been treated there by the same group of people. You can get your PCP to refer you to the Center of your choice once you do your homework. Phoebea

lilac_lilly · 04-10-2005, 11:45 AM

wow! i didn't realize all this was so confusing. i see a regular neurologist, he is a great doctor that has my best interest in heart. he tried to send me to auggusta but i couldnt go. i cant get a job or hold one because of these seizures which makes it hard on me(i have two kids that are very young.)i am also having a hard time getting my ssi. so financally i couldn't afford to go that distance to the dr. it is a 4 hour drive to get to agusta from where i live . so i chose to stay here with my neurologist in savannah. his nurse has told me dsome of what this vns intells but it still makes me nervouse. thank you very much for all the information and for replying to my post.