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VNS Experience?
A MyEpilepsyTeam Member asked a question πŸ’­

I am having my VNS "installed", lol, on Monday. I am nervous. Does it hurt when you're recovering? I'll be put out for it, but I'm nervous about the pain when I wake up. Does it feel weird having this thing in your body? I'm not normally a worrier and I'm pretty tough. When delivering my babies, the doctor asked if I had nerve endings because I was smiling and laughing through the contractions and pushing, lol (without an epidural, I might add, proudly, haha). But I'm worried about the… read more

posted July 13, 2017
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A MyEpilepsyTeam Member

I had mine "installed" about 8 weeks ago. Now, keep on mind I'm almost 60 yrs old, and seem to be healing from things a little slower than the average bear, but I'd say I felt worse than I expected for 2 weeks. I used the pain meds sparingly for those 2 weeks ( twice a day for the first week and once a day when I felt I truly needed them for the second week) and then switched to Tylenol. I had full range of motion of my neck and shoulder but it felt like a satellite dish was in there until it healed! LOL! My surgeon only used internal sutures and surgical glue on the outside. You can hardly tell I had surgery now. After the device was turned on 2 weeks later, I could hardly tell. It took until the 2nd time to start feeling it. Not painful, just weird. Like a palpitation that takes your breath and voice away for a few seconds. Makes me give a little cough too. I had it turned up to 1.0 last week, and I can tell you I DID feel that! A short few seconds of pain every 5 minutes but I stuck it out as I seem to adjust and get used to it...I want to see if it's going to start doing its job and slow the frequency of my seizures down.
All in all, I'd say it's not bad. Ask me again in 6 weeks when it's turned up to its full capacity and hopefully my seizures are lessening. I'll deal with temporary discomfort if it does its job.
BTW...the voice changes every 5 minutes for a few seconds? Well, I just figure I sound sexy and sultry...hahahaha. Just like laryngitis. I love to sing too, but can't say I have the greatest voice in the world...so, others ( like my husband) may be secretly thanking their lucky stars that he gets a break from my voice! LOL!!!
My epileptologist told me he has another patient who seriously sings in choirs and performs...she will actually turn her device off during these times. Glad I don't have to deal with that, because MY luck I'd have seizures during those off times!
Good luck. Hope your recovery is fast and easy. Any questions, feel free to contact me!
BTW...I'm turning a negative into a positive and have found a place that has NATO watch bands which are identical to the standard black one the company gives you. So...at least I have bright colorful bands now! Working on getting one for every outfit...LOL! πŸ˜‚

posted July 14, 2017
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member I had at least 4 a day until I got to 2.00. I went about a total of a month out of three being seizure free.

posted July 15, 2017
A MyEpilepsyTeam Member

I've had a VNS installed approximately three years ago. I've had to have the output increased approximately two years ago. I haven't had any problems with the VNS except the Doctor's evaluation that it wasn't eliminating enough seizures.
Since his system increase, the number of seizures has significantly reduced. I carry a VNS stimulator with me wherever I go. I also have a companion who carries one with her. There has been unfortunately times when the stimulator was unavailable. Of course, a seizure resulted. Adapting to the system took some time.
This morning I my brain notified me of an approaching seizure when I was out shopping. I spent approximately two hours controlling the oncoming seizures with my VNS. I went home and to bed. Upon waking, the seizures were eliminated.
This is my example of a success story with the VNS. Failure would have meant time in a hospital and more evaluation. Unless there is a significant newly developed resolution to my type of seizure develop, there isn't significant return to go to the hospital.
As an FYI: It should be noted that my seizures are due to two TBI'S. Due to these, and the brain damage cannot be truest recorded and evaluated; the duration of life cannot be accurately determined.

My VNS Experience:
1. Recovery from the installation of the VNS did not hurt. I had to be reminded that it was done.
2. It doesn't have a noticeable feeling to have the VNS, at least, none that I've discovered.

posted July 19, 2017
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I'm 59. I was on 8 different meds ( sometimes 2-3 at a time) before VNS decision was made. Right now, the only med I can tolerate is Briviact 100mg 2 times a day.
I was having 1-2 seizures a week before surgery. Still advancing the intensity of VNS, and I'm up to 1.0 right now. I haven't had a seizure in a week, so for me that's pretty good. I was told not to expect to see any changes for about 6 months after its turned up to 1.75

posted July 15, 2017
A MyEpilepsyTeam Member

I got my first back in 1999 when I was 29. The insisions were sore a few days but the hoarseness lasted about 3 weeks. At first you can feel it turn on until you are used to it. You get used to it fast, or I did. The hoarseness and feeling when it turns on happens everytime the turn it up.

posted July 14, 2017

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