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vagus nerve stimulation surgery
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foreverjeffs17 posted:
Hey my name is Kylie, and I'm 24 years old. Just wanted to hear some thoughts on this particular surgery. I recently had it done in September and was hoping for some insight! Thanks
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dancer86442 responded:
Hello Kylie,

Welcome to our Epilepsy Community. I do not have the VNS. But, a member, Nancy aka hawaiin_girl, has the VNS & will be happy to share her thoughts. Until she logs in you can type VNS in the 'Search This Community' tool bar to see what others' have had to say, too.

My Thoughts: as w/ any Epilepsy treatment: what works for one, may not work for another. Same applies to side effects & the need for meds as well as VNS.

Would you Mind sharing how you are doing w/ the VNS? Why you had this procedure done? Is it helping? Is it properly adjusted or do you have to 'wait & see'?
Are you on medications, too? How long have you had Epilepsy? Have you heard about a new procedure called RNS? It works similar to the VNS, except no magnets & the system is attached to the brain.

Hugs! Love Candi

I hope you have a Good Day. Hugs!
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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foreverjeffs17 replied to dancer86442's response:
Thanks Candi,
I remember noticing I had smaller seizures from the time I was about 10. I didn't notice at the time, but now that I know they were absent seizures it all goes back a few years before. I had my first grand mal when I was 12. Through the years I went through about 7 different meds. I had been on them all and was starting to loose hope, when I started on dilantin in april of this year. There was an amazing result to taking that with valproic acid and banzel, but honestly I think it was mainly just that drug that does it for me.
I used to have grand mals every month around that special time. Then they got worse and I was having them almost every week. My absent seizures did stop for a while and they came back even worse. I was getting married in august and all the months prior to april were very terrible. As I know that stress is a big part of seizures, I thought that could be it...and it was that with a combination of the wrong meds. So changing to dilantin decreased my grand mals bigtime. I went months without having one and was happy with only having them every 2-3 months.
I don't have an aura for my grand mals and do know when an absent seizure is happening, although there is not much i can do. I was admitted in august prior to my wedding to a epilepsy clinical study. I was there for a week and they discovered and looked into helping my absent seizures. Every time i had an absent seizure i pushed a button which recorded the brain activity. I was thinking they were looking to induce a grand mal, which in the end I was told that I was there to take a look at my absent seizures and how often I had them.
I thanked God that i had never had any serious injuries, and this year looking back on it I had my head glued shut, a staple put in my head, and a broken jaw without knowing it.
Then I got the VNS and at first it made me really sick when increasing it. But i have found my body has gotten used to it. I go every 2 weeks to increase it. I keep a journal of everything and to remind myself of what I did previous days as my short term memory was affected over the years. I have to increase the stimulations to approx. 3.0 milliamperes. Currently I am at .75, still a long way to go. I have experienced the hoarseness in my voice, but is only really bad at the beginning when they increase it.
No i haven't heard about this new RNS procedure. Thanks though for mentioning it, I have something i can read up on now
Hope your day is wonderful as well!
Kylie
 
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hawaiian_girl73 replied to dancer86442's response:
hi kylie,

I am Hawaiian _girl.

I have had the VNS for bout 6.5 years now. It has been replaced once in August of of 10.

IT works great for me. I can shoot auras an szs with one or a few swipes of my magnet.

I wear the wrist magnet a lot easier than triying to fiddle around trying to find the other one.

any way I was originally set at 5 minutes OFF and 20 seconds ON, and just about about 3.5 months ago it was all reset. I am now at 1.8 minutes OFF and 21 seconds ON.

everything has been chabged for better therapy.

The sugerywas done under general and it took just over one hr for the actual impantation. when it was replace about 20 minutes.

IT hurt like double hockey sticks, andI was bawling in the recovery room when I first got it. so much I sis not even feel the insiosn in my chest.

They cut a insion along a crease in your neck that will not show and that gains them access to the Vagus Nerve. Then the wind 2 eletrodes and an anchor around the nerve. Then they tunnel the lead up right next to the skin of your neck after they implant the stimulator in your left chest. IT is sometimes called the pace maker for the brain.

IT sends out electrical signals in even inervals of electricity to tey and keep the neurons form firing wrong and out of order thus keep in them in order.

The 3 most common s/e are haaoseness, couging, and trouble swouble swallowing when the stimulator is ons while eating. so I just stop and wait to; it tirns off then start eating again.

I started responiiiiing to it at 2-3 months and have had nothing but good lich with it,

ITs efficacy is really not shown to about a year after implantation.

however I got lucky. I resoind to electricy I had a TENS unit for my headchesand andTMJ pan and it took all that away with the eletricirty so we knew I would respond to it, it was not if it was when,

I also take 800 mgs of Lamictal 200 mgs of Topamax and 3 mgs of klonopin.

b4 the VNSwas done I wa s slipping awaaay slowly and was having 8-10 szs a day every day and something had to be done, so when I changed neuros almost 7 years ago I had no choice in the matter he MADE me get one. my quality of life stunk and I can not work or drive nad never wil be able to.

I lost a 13 yr old daughter almost 4 years ago and have a 17 yr old still at home in school and is junior. She is doing well she has GMs and also has a VNS. It gives her some relief.

we live on O'ahu in W. Honolulu and try to awoid the Waikiki area which to me is a real pain with all the ourist.

the last sz I ahd was almost 3 weks ago. so tjatwas good.

I have a 1.5 yr old fmILy dog who hs picked up on the sz actoivity and a 3 yr old sz response dog who is a boder collie named Fly.

I am 40 yrs old and have a 45 yr old husband named Jaysn.

married for 18 years.

any more questions about the VNS I wouldGLADLY answer them.

I am also an ambassador for the VNS and volunteer under the rep that works for the Honolulu area.

good luck.

Nancy AKA Hawaiian_girl
 
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foreverjeffs17 replied to hawaiian_girl73's response:
Hey Nancy,
I recently had my VNS put in September 6. 2 days before my 24th bday.

I also experienced that same pain you described. I was put under g/a as well and when I woke up the pain was excruciating! when i woke up i didn't really notice the pain at first but when i started vomiting it made it worse.

I also wear the wrist magnet and agree it is much easier to use. My husband when home, uses the clip magnet.

Mine is currently set to 5 m off 30 s on and i am currently at 0.75 and waiting to get to 3.0 then determine what works best for me. It has been a change for the better. The only s/e that bothers me is the hoarseness, as I love to sing. I also have times where i find it hard to breathe. Did you ever experience that?

I take 500 mg of valproic acid, 800mg of banzel, and 300mg of dilantin. I get a lot of bad side effects from meds. I got the weight gain with the valproic and the swelling of gums with the dilantin. I also took lamictal when i was about 15 and in high school. I experience the rash and was rushed to the hospital due to my skin peeling off my face. I also took topimax and with that i could not eat and was living on boost shakes. I also became toxic on topimax and needed to be taken off due to the fact that i could not hold a conversation let alone count to 10. do you experience any of these w your meds?

I am glad to see you are doing better! and truly sorry about the loss of your daughter.

I also have a dog of my own but he has not know knowledge of whether or not a seizure is coming on or not.

I am 24 years old and my husband is 27 years old and his name is Jeff. We are newlyweds, married in august

I live close to the Toronto area in Ontario Canada in a small town called Cambridge.

Thank you so much for all the information it has helped a lot!

Kylie
 
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saxofone1 replied to foreverjeffs17's response:
Hi Kylie,

I have no info to share with you about the VNS. I would simply like to offer you my best.

I had been tested for the VNS about 13 yrs ago. But after additonal testing my docs thought a lobectomy was the better way to go for me.

I have met a few people who have the VNS. Once they got past the initial side effects(period of hoarseness and dry though) they are happy with the outcome.

Again, I wish you the best.

angie


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