Epilepsy Neurologist Explains Vagal Nerve Stimulators (VNS)

About Vagal Nerve Stimulators (VNS), what they do, who should consider one, some pro's and con's.

[@MikeKnoxComedy]

my daughter got hers two years ago and has been seizure free for 11 months!

[@AndrewReevesNeurology]

Woo hoo! Congrats! VNS can certainly be an important part of a seizure control regimen. I hope she continues seizure-free!

[@noor50291]

I’m trying to get this for my son hopefully it will help him with his seizures 🙏🏻🙏🏻

[@jimtheedcguy4313]

I suffered two siezures brought on by taking too much tramadol, and ever since then, I've been so interested in siezure research and epilepsy etc. I'm not diagnosed with epilepsy as it was 100% brought about by drug abuse, and thank God nothing too bad happened both times, but it's just so interesting what our brains do. The feeling after the siezure is just indescribable, and finding out that because I had so much serotonin in my head, it caused a grand Mal! I had no idea the medication had any type of effect on serotonin, and what relation that had to siezures. It's a scary thing but that only makes me more interested in it.

[@kaylaterrera6024]

So excited for this... I've had seizures since I was 13. I pray it works.

[@AndrewReevesNeurology]

It clearly benefits many people, but remember, VNS tends to *reduce* seizures, no eliminate them.

[@mgray3130]

I have had a VNS for 5 years or so, I was so hopeful that it would completely stop my seizures! I was sorta under the wrong impression from my doctor because I thought after a year or 2 it would have completely stopped my seizures and there would be NO! Well it did not stop them but, but it has slowed them down alot. Every now and then when I have not had any for 2 or 3 months I think this is it and I, will try and stop my meds! Guess what? It does not work that way for me. I'm myself just coming off 3 days of seizures, and my Doc did not stop the meds I did! Take care and thanks Doc for all your doing! I just found you today. You got a new follower here!

[@Dessenceapassion]

my 8 year old son is scheduled to have this procedure on Monday....we are hopeful that it helps....he always says he wants to be a normal little boy

[@AndrewReevesNeurology]

Best wishes for your son's care! I hope it helps.

[@ExternalGod]

RozLynn Williams Best of luck.

[@user-qz4pf4pw5w]

RozLynn Williams Hi! I need it very much for kid. How much it cost and where i can buy it? I am from Ukraine. Here it cost 18000$

[@giselavazquez9250]

RozLynn Williams how is your son in today’s date after his vns ?

[@seancrawford126]

I have had a VNS for quite a while and have been able to stop my seizures prior to them getting bigger. it has helped alot.

[@AndrewReevesNeurology]

Awesome! Glad to hear you've improved with VNS. It can be very helpful for some folks (I wish it was for everyone, but it's not there yet...!)

[@user-qz4pf4pw5w]

Sean Crawford Hi! Can you tell me where i can buy it? I need it for little boy in Ukrane.

[@seancrawford126]

Олена Булаш I don't know where it had been purchased, but I was provided it by my SSI. My neurologist had requested the implant and it was done. I had a newer model implanted in may of 2018, in Corpus Christi, TX. His name is Dr Mathew T. Alexander and should be able to help you more on where and how to get it [phone]. My neurologist is Dr Luis Gaitan in Brownsville, TX [phone]

[@seancrawford126]

Олена Булаш Cyberonics is the company that provided the VNS contact: Europe/Africa/Asia [phone] USA/Canada [phone]

[@kayleighvarney2009]

My daughter is having this she's had seizures since 5 and a half months old she's 9 next week on 3 epilepsy meds diagnosed with epilepsy aged 1 due to genetic condition we both have my seizures stopped aged 3 Yr old she's sensitive to alot of the meds and allergic to benzos so we been told she's a good candidate now were on the list

[@lauragetty5408]

I'm 36 and I have epilepsy tuberous sclerosis and I have tried almost every kind of medication, then I heard of VNS so I'm going to see my Doctor in London to talk to him about it

[@AndrewReevesNeurology]

Best of luck to you, Laura!

[@keciameecia]

Good luck Laura, I just got back home from the hospital yesterday. Now after doing the monitoring. So I'm just going to wait to talk to my neurologist on the information they found out while being monitoring me. Before they put the VNS inside of me. If you don't mind me asking. How long did you have to wait after beinging monitored before you get the VNS put in.? What finally made you make the decision of getting the VNS? I'm nervous about getting the VNS

[@konromios8360]

Laura Getty hi wanted to know if you have had a VNS implanted yet and if it has helped? I have a 7yr old son with Tuberous sclerosis and is scheduled for a VNS next week but I’m worried it may not help him.

[@kayleighvarney2009]

Me and my daughter both have tuberous sclerosis to

[@kayleighvarney2009]

My 33 and my daughter is 9 and she's tried alot of the meds she's sensitive to alot of them and allergic to benzos she's been accepted for vns were on the list now

[@breannawallace7181]

I’m and wondering what does the vns look like on the outside of the skin?

[@tylerdabtreedabbinmahn7102]

Strange because I know of people who've been off there meds for almost 2 years now and seizure free

[@amandaroper6452]

I have a Vagal Nerve Stimulator & I was diagnosed with Intractable epilepsy before I decided to have Vegal Nerve Stimulator Placement surgery. I wish I had brain surgery instead.

[@davidhenry1156]

I have Polymicrogyria and have no warning signs b4 having an absense or seizure.I got the VNS last friday being one of the first in Northern Ireland to get it and was told it would automatically turn on in 10 days,so should be 2morrow.Lord willing it will help in some way,shape,or form.

[@rachelmulveen2314]

Hi I also have a vns in for a good while now my number is low but I have 2 nurses who check this out. Thank god that bueamont hospital placed this in me. I have now to wear the magnet now I was just told from my nurse I have my nerve to grow more. My voice got raised in my vns because nobody knew anything I was saying but I am great full I have this in me. It hurts me sometimes but I am glad it is working with the time clock on and off inside me. I can be scared but happy inside.

[@AndrewReevesNeurology]

I'm glad the VNS has been helpful, Rachel. It's a very useful thing for many people--not all, of course, which is something we must always stay aware of. I hope seizures settle down and epilepsy becomes something in your past. Best regards.

[@tinajones552]

The only time I have a seizures is when the battery stops working I have been seizure free for 30 years can't be around a microwave or metal detector because it messes with the battery my doctor told me that when he had it put in

[@woolfy02]

I'm hoping to get approved to get VNS for TRD. Is the 'Robot voice' pretty common with this? If it works for me, I'm sure I'll get used to the side effects.

[@marieazrak1951]

Infinite nurse stimulator runs out of battery or life what do you do do you just do another operation replace it with a new one

[@pattyhollis9187]

some of your info are wrong but most of it is right my little girl had the vns from age 2 and she's 10 about to be 11 now. with the vns it could stop seizures 100% it don't happen often but it can... you can also use the vns wond if the persons mood seems off they don't know why but it seems to help some people. they say some times when someone's mood is off that can throw them into a seizure.

[@AndrewReevesNeurology]

I'm glad your girl has become seizure-free. I will say I've never seen the VNS make someone seizure-free by itself. I've had a few folks where the VNS greatly reduced seizures, and by working with other medications we got them seizure-free; but the VNS was part of a broader set of treatments. In medicine there are exceptions to every rule, though!

[@jokersqueen2199]

I am have the vns implant done soon! Nervous but ready. Any ideas on how to prepare my self I hate surgery

[@AndrewReevesNeurology]

Best of luck with your VNS! Usually there's not really that much one can do to prepare for surgery. Fortunately folks don't tend to spend a night in the hospital.

[@cortniboyd8504]

I got mine 10 years ago. And I have been Gran Mal seizure free since 2008. I use to take four medications. Now I just take two. And now I have small tremors occasionally.

[@AndrewReevesNeurology]

I'm glad it has worked out well for you, Cortni. You probably have had to get the unit replaced at least once by now, if it was done 10 years ago.

[@pyrotek40]

Having my VNS operation in June, absolutely no meds have ever worked for me, I go into multiple seizures in one day, 14 one day and I was put into a coma with kidneys and other things shutting down from lactic acid build up, I couldn't walk for weeks after I came out of it 8 days later. So really I'll try anything at this time.

[@AndrewReevesNeurology]

Wow! Best of luck with the VNS. I sure hope it helps at least tone things down a bit.

[@JewlTonz]

Wow! So sorry you experienced this. I'm curious: did you get the VNS device? My daughter (16 yo) is about to have the procedure. She needs lots of encouragement.

[@pyrotek40]

@@JewlTonz well I can't believe how great the VNS worked.. As a matter of fact it took till that October not June to get my VNS. they postponed the operation because of something administrative level.. The VNS changed my life, I never liked sunglasses and now i haven't had to wear them in 2.5yrs.. Took 1/2 yr to adjust the strength and timing... I still have had seizures but a few a year as opposed to a few a day... The operation was quick and easy I recovered in a day, my throat was sore but always able to eat, it was nothing like eating with a tongue bit in half.. Her voice might sound different for a little, my voice took a long time to come back but my Dr. said it was unusually long time.. She will love love love her VNS it will change her life.. There is a "Honeymoon" time but then after some time she will discover how well it works for her and she will GET A NORMAL LIFE.. GOD BLESS HER, KEEP THE FAITH.. Technology worked for me not pharmaceuticals.. This was an outrageous 180 degree turnaround in my life!!! Jewl Tonz email me @gmail.com before or after if yall need to talk.. I'll say good luck but she won't need it.. The best surgeon in the world did my surgery and the best surgeon in the world will do her surgery....

[@pyrotek40]

@@AndrewReevesNeurology im sorry but i never got back to you.. I can't believe the change in my life.. VNS is such a big thing in my life. I live less than 10mi away from the VNS manufacturer, after my surgery i met two techs that work for them and are parents of my daughters teammates on her highschool swim team.. I was able to visit and watch my daughter swim her last swim meet because of the VNS and two great doctors..

[@pyrotek40]

@@JewlTonz i got my VNS because I asked the company for one will out any insurance, surgeon or hospital to put it in me.. The lady Ms. Karen told me they give them away IF YOU CAN FIND A SURGEON AND OP ROOM, but both my dr at the Epilepsy Foundation Houston and Ms.Karen told me not to get my hopes up cause i won't be finding a surgeon and an op room but though some miracle i won.. Ive been a loser my whole life but ill take all those loses for this one win!!!!

[@sharmaingarcia9288]

Hello Dr. Reeves. What's your thoughts on the ketogenic diet for seizures

[@OcaRebecca]

Question! I have NF1 as well as epilepsy and recently got a VNS. There was a bit of a hiccup during the surgery, as I had a fibroma on my vagus nerve right where the neurosurgeon was intending on the electrode being. There had to be some adjustments made mid-surgery. He said he had never seen that before. Are fibromas on the vagus nerve rare?

[@MattTakesPhotos]

Thanks for this video and your information! tl;dr I have a story that is long and hard to summarize. Mainly, I have to get MRIs every 3 months. Can I still do that if I get one of these? I've have multiple types of seizures going on for 21 years now. They happen daily, usually multiple times a day. I have a brain tumor and have had 4 surgeries for it. The last two (a week apart, 2016) left me partially paralyzed and deficient on my left side and left me with some mental and speech deficiencies. I'm on 7 daily medications plus an as-needed for seizures. This is just the current lot and doses. I've been on so many different meds that honestly I can't remember them all. A couple weeks ago a new neurologist diagnosed me with Refractory Epilepsy and brought up this device, which is the first time I had heard about it. I recently did a 24 hour ambulatory EEG and soon will be doing a 5 day EEG where they will stop my meds and really get a good look. They then want to take a functional MRI. I get MRIs every 3 months, but the functional MRIs really suck. I guess they found something in the EEG that they want to take a better look at so 5 days with no meds and back to back seizures it is. The other option they brought up was, after the 5 day study and FMRI, is an epilepsy brain surgery. They would remove the part of my brain starting the seizures. They said it would cause more mental and physical deficits. I already can't do what I previously enjoyed. My photography is my passion, and I can no longer get out to the landscape locations that I used to. I also can't ride my bike at all. I immediately crash straight down on my left side. The pain goes all through my rib cage to my right. More deficits would be heartbreaking. Having less seizures would allow me to feel a bit safer getting to go to some of these spots, however even without the seizures I am no longer able to get to really easy spots I used to be able to. I still wouldn't be able to ride my bike however I can still walk. I can still navigate steps. I didn't have to install a ramp. I can't even do a slow jog or shuffle any more so more deficits does not sound appealing at all. If a VNS works I'd rather do that. I just need to know if I can still get the MRIs after. I get 4 a year. In 2018 I was part of a *clinical study* and had 13 MRIs and 24 CT scans. If I have to live all the seizures so I can get the MRIs - so the tumor can be tracked and I can live - that would suck but so be it. Thanks.

[@AndrewReevesNeurology]

The VNS units are MRI compatible. They generally recommend turning the unit off before the MRI and doing the study using the head coil, not the body coil.

[@MattTakesPhotos]

@@AndrewReevesNeurology That's good to know, thank you. The head coil (first time I've heard the name of that thing) is the thing I always use, with an exception or two over the last 21 years, so that is good news. Thanks again for your help.

[@CW08616]

I was diagnosed with JME (generalized) at age 13. My seizures were under control until I hit my mid-40's. All the sudden I started to become sensitive when I went in stores like WalMart and felt like I was going to have a seizure again. A grandmal finally DID occur. We have tried upping medication and changing medication - none without major side-effects. I am fine with a low dose of med, but wondering if VNS would be an option if I have generalized, but the latest EEG also showed partials.

[@AndrewReevesNeurology]

Hard to say, Caroline. In order to form a firm opinion I examine the patient, personally review the MRI scan of their brain, look at a recent actual EEG recording (not just the report), and get a detailed history about what meds have been tried, which ones failed and why. Certainly I have patients with both primary generalized and partial-onset seizures, and have put VNS units in some of them. Response is variable, as one would expect, but it can be helpful. I can tell you I have seen people whose epilepsy is generalized but the neurologist reading the EEG has misinterpreted fragmentary generalized discharges as being partial, when in fact the underlying problem is still generalized. That's one reason I always want to see the EEG myself.

[@jordyn2426]

I have a vagel nerve stimulater in my chest I also have a magnet to use when i have a seizure Also we use the magnet when my vns goes off I also take medicine for my seizures.

[@luismaysonet8304]

Yay I'm not the only one

[@alycatt7323]

Have they ever bumped it up too high? Mine feels way too strong just was at rhe doctor and its making my skin vibrate and throat very strongly

[@Coolscarykid]

I’ve had absence seizures since I was 7 years old. Now I’m noticing that I shiver more than normal and I’m not cold. Even I’ve had bad headaches and at times I feel like I’m going to have a seizure so I’ll hold on to something just in case so i don’t fall. Do you recommend I talk to my neurologist about this device?

[@ezzpe9]

They said something about if your heart rate goes up it will send more pulse but my cuestion is if you do exercise you will have trouble with it?

[@AndrewReevesNeurology]

Generally speaking, exercise is good for us. I have not had problems in my patients with the VNS who exercise. The newer units do have a heart rate sensor, but that can be adjusted.

[@earlkeith4135]

Does It Help with Severe Tinnitus???

[@christyday128]

I've been having seizures for 20 yrs now..tried every medication with no help, then got the VNS implant in 2009, was having a gran mal seizure and my husband used my magnet and it didnt do anything! I've had the setting set so high that I had to get the battery replaced a few years ago, since still having them I got my right temperol lobe removed in 2011, havent had a gran mal since that surgery. Now im on 3 different seizure meds, taking the CBD oil, and still have seizures!!!!! :/

[@Mia-su8el]

Maybe give the Ketogenic Diet a try it might help.

[@christyday128]

Ive tried the keto diet..no luck :/

[@kamerons76]

Temperol lobe connections reconnect over time sometimes so you can start having seizures again

[@lb1984]

Forthose of you living with seizures that have gone through all of the meds unsuccessfully, who have felt that you have run out of options and are long past hope, please find another video to watch. This guy is a downer. No, it doesn't work for everybody. I received nothing helpful for 15 years, gave into the fact that seizures would be the only life I would ever know. I am not in that place anymore because of my VNS inlant. I am excited about life! I am not living in constant fear. I feel like the jailer left the keys and they were totally within my reach! I am amazed with my results because I can envision life! I can see it all laid out ahead and it looks great. Am I overselling it? I don't think I am. For 15 years I have been waiting for respite and I have it. Keep looking, find another video, it might be what you are looking for, it might not. Either way, I wish you peace!

[@mohammedriaz4989]

IF you have one of these I might be getting one soon but instead i want the Epilepsy surgery ive had this illness since i was 11 (22 now) and i feel like im in a cage ive been fired from 3 jobs because i cant work properly and am litteraly thinking about giving up on everything like event things like cooking my GF has to do for me because of my shakes. is it worth it?

[@lb1984]

@@mohammedriaz4989 I don't know. Seizures are different for everyone and so is the efficacy of treatments. If your insurance will cover it, then I would say it's worth a try.

[@patriciawatson5304]

LB heal the gut -get rid of inflammation and therefore drain toxins out if the brain. See a Naturopath

[@lb1984]

@@patriciawatson5304 yeah, I am not going to do that. I am going to keep seeing my neurologists. My liver and kidneys are perfectly healthy so the "toxins" are taken care of. Being fairly knowledgeable about the neurology that is causing my condition, I am pretty sure psuedo medicine can not be a replacement for neurosurgery. This one is out of that MLM ballpark, but if I encounter a person with a simple rash or the hiccups, I might pass your advice along. No I wouldn't because I don't prefer to steer ppl away from reality to pad my pocketbook. Nice try, but I am informed about my condition. Perhaps you might stumble upon a simpleton in the next comment section?

[@Warrior-grandma]

How do I get my doctor to give me this been on Dilantin since I was 12 I am ore osteoporosis I need help before this illness gets any farther! I am almost 60 the doctor won’t change my meds or do this for me PLEASE HELP ME

[@AndrewReevesNeurology]

Well, Susan, perhaps you need to get a second opinion from a different neurologist.

[@katherinewilson1853]

Go to a different doctor and take your power back. You have the right to do so.

[@ysabelhuaman7174]

Contra indicaciones alquilen saber por favoritos

[@sandrasandhu3419]

I have heard about this!! Does this actually work? I have had three surgeries in my life and it was just to get some tissue out of my left temporal lobe but I was helping but I’m back to square one again.. how well does VNS work

[@Brian-vc8rr]

Works for me. Voice is cracky when I talk loud

[@AndrewReevesNeurology]

It helps a reasonable percentage of people--not everybody, of course. If you're contemplating temporal lobectomy you obviously have an epileptologist on your team of care providers. You'd want to talk it over with that person.

[@sarahskeldon4636]

It has had a positive impact on me I'm still having it tweeted but I couldn't be without it now and my voice doesn't even go anymore when it kicks in. I'd definitely look into it. Its life changing stuff

[@angeliam8255]

I might have to have a VNS depending on the EMU test results

[@AndrewReevesNeurology]

It's a big decision, isn't it? I hope everything works out well for you!

[@saklee1777]

my doctor said the vns would probably reduce my seizures by half but that would just mean i would have seizures once every 2 or 3 weeks and with the side effects i've heard about it, its not worth it unless i end up having cluster seizures everyday

[@AndrewReevesNeurology]

VNS is often useful, but like any treatment, it isn't for everyone. What constitutes "useful" reduction of seizures is different for every person, too. Best of luck!

[@debbiesueoverton7902]

It has never really worked for me at all.

[@princessmeja9914]

I had one about 10 or 11 years ago it worked for about 3 months and I started to get electrocuted and then I had to wait for 4 months to get it taken out I killed one of the magnets and almost killed the other one I went through hell so please be carful ok because they won't do anything for you

[@lb1984]

That is a really unfortunate experience. I am still in love with mine, it's still brand new but I have had instant results with PTSD. Stopping a PTSD experience and panic attacks dead in their tracks, pulling me back into the right now. Decreasing the PTSD by default decreased seizure activity. I have auras with seizures so I really love being able to do something about it in the aura.

[@anneavram9210]

Clearly not much improvement as a seizure treatment

[@robertharvey9047]

rutgers university