1. < Epilepsy & Seizures

VNS flipping due to significant weight loss

Posted by camrynmarie @camrynmarie, Jan 30 11:46pm

I got my VNS placed in 2019 and have had it for around 5 years now. I stayed about the same weight up until recently when I decided I wanted to lose weight and dropped 60lbs. Due to this weight loss, I have excess skin around my VNS and at night it will try to flip when I sleep on my slide so I don't get good sleep or I wake up in the middle of the night to my VNS sticking straight up out of my chest and I have to push it back down or roll over on my back and wait for it to fall back down. It's become uncomfortable and I've started trying to sleep with a pillow between my breasts or under them depending on which side I sleep on but I'm wondering if anyone else has experienced this and what have you done to deal with it or even fix it. I have talked to my neurologist but she's only dealt with one other patient with this problem and there wasn't much advice she could give me. I'm afraid to lose more weight and it completely ends up turning over. Thank you to anyone who can help.

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Leonard | @jakedduck1 | Jan 31 12:10am

@camrynmarie
I’ve never heard of that happening. I refused the VNS so I have no first-hand knowledge of it but I wanted to ask you if it's controlling your seizures. Are you taking medication also?
I hope your doctor can somehow secure the VNS.
Take care,
Jake

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1 reply
camrynmarie | @camrynmarie | Jan 31 12:24am
In reply to @jakedduck1 "@camrynmarie I’ve never heard of that happening. I refused the VNS so I have no first-hand..." + (show)
@jakedduck1

@camrynmarie
I’ve never heard of that happening. I refused the VNS so I have no first-hand knowledge of it but I wanted to ask you if it's controlling your seizures. Are you taking medication also?
I hope your doctor can somehow secure the VNS.
Take care,
Jake

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It’s not controlling them completely and I’m still taking medication but I’ve reduced my medication by well over half. I’ve considered just getting it removed but family members talk me out of it every time because they think it’s made at least somewhat of a difference in my seizures even though they haven’t gone away. I hope so too though or I hope I can at least get some answers here or elsewhere.

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Leonard | @jakedduck1 | Jan 31 1:40am

@camrynmarie
Have you asked a surgeon if they could somehow secure it?
Jake

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Chris Gautier OR Santosha | @santosha | Jan 31 5:28am

Hi @camrynmarie
Have you heard that nowadays there are helmets that can develop similar functions to VNS, RNS, etc? I discovered it through a neuroscientist while doing TMS (transcranial Magnetic Stimulation) for depression. Those helmets can also help to control seizures if used daily (around 30 minutes every day if I remember well). And if it does not bring benefits, the patient just needs to stop using it, much easier than removing a VNS or RNS. Neurocaregroup was mentioned by this neuroscientist as one of the manufacturers of those helmets.
https://www.neurocaregroup.com/
Unfortunately, very little is spoken about this treatment yet. It seems to be a solution more used in Europe in countries such as Germany where this neuroscientist did a post-graduation.
Chris (Santosha)

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joseph1963 | @joseph1963 | Apr 12 7:01am

I would say the excess skin is the cause. I've had one since November 2000. It has never moved on me. It's been shut-off since 2007 as it was making my throat sore. I now have to clear my often as it has affected my vocal cords.

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