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Vns drama

just wondering if anyone else has had drama with a vns implant? I was all for this thing and it did help. Except it had to be turned down because it caused gastroparesis, pain every time it turned on, shortness of breath, sometimes my throat tightens up, etc.  the last 6 wks the muscles around my leads have been spasming throughout the day everyday all day and night, and it causes discomfort as well.  This is getting turned off in a few days.  I'm kind of bummed because on one hand, it worked, but i can't handle the adverse events.  And i don't qualify for any other surgery i guess....

Comments

Yes, the vns is the only one

Yes, the vns is the only one i qualified for.  I was told with my type of epilepsy seizures can start from anywhere.  With the rns, you can only have 1 focal point.  But that was the one i wanted in the first place.

Yea i lucked out and go to a

Yea i lucked out and go to a great place.  I'm just bummed about this vns working/not working and wish there was another option besides meds.

my husband's neuro is

my husband's neuro is recommending VNS.  Is there a way that a doctor could figure out if this pain is going to happen or not? Is it due to something specific to YOU, or is related to how the did the implant (ie: did they mess up?)I will be following this post to see what other people have also written about VNS...it's a tough decision to make since the results for people seem to be very random and positiive benefits kind of iffy.

Reader's Digest article:

Reader's Digest article: Medical Devices That Can Kill is a must read for anyone either with the device or thinking about surgery. Yes, that's me in the articlecenter4research.org/nrc-in-the-news/news-analysis.../medical-devices-that-can-kill/

Hello, I’ve had the VNS for

Hello, I’ve had the VNS for about 5 years and have not had a seizure in that time, which is amazing! I was just recently diagnosed with gastroparesis though and with the vagus nerve playing an integral role in the stomach emptying, it’s hard to think it’s not related to the VNS.The success of the VNS has been life changing. To the other person’s question though, not everyone will see the same results and I am still taking 3 meds. I also have a rare side effect that causes my left glottis to be parylized every time it pulses, which affects my breathing and speaking but is tolerable. The gastroparesis on top of that though may force me to make a difficult decision. Like you, my seizures start all over and so I didn’t qualify for the brain surgery and probably not the RNS. DBS (deep brain stimulation) is now approved for epilepsy so that might be a consideration down the road. Do you still have the VNS? Does your gp totally go away when the VNS is low or off? Thanks and I wish you all well!

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