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Advice? Still having seizures and MRI is normal.
I need advice, My brother has been having seizures since we were a year old and our whole lives we have been told that it is just epilepsy he’s even been told that it is just anxiety. over the years he has had a bunch of different cocktails of medications, and neurologists he is currently seeing an epileptologist who has recommended that he goes to the mayo clinic because he has had seizures more frequent in the last few months and it has been impacting his quality of life and he is super frustrated and wants answers we went to the clinic and they did an MRI which came back completely normal and they want to do a PET scan in November has anyone found any other causes for seizures other than the brain or is there anything else we should be looking out for it would be appreciated
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@lisalucier his neurologist put him on xcopri and since has been having more seizures he has since been seen at Cleveland clinic and they have decided to try the VNS we are hoping that will work and thank you for asking!
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4 Reactions@maureendigi - good to hear from you.
Hoping @tonyde @jakedduck1 @santosha @ldlauwers @camrynmarie @joseph1963 will have some input for you regarding their experiences for themselves or a loved one, or their personal research related to VNS as your brother prepares for this implant.
When will the VNS be implanted? How is your brother feeling about this procedure?
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3 Reactions@lisalucier the first week of march and he’s excited but also nervous if there is anyone who would be able to tell me how their experience went that would be great
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1 Reaction@maureendigi
While I haven't had personal experience with VNS, we have some members in our group who have! I'm hoping @happyrivers9 @sb74 @lilydahlia @camrynmarie @joseph1963 will stop by and share their experiences with you.
You might also find these past discussions helpful if you haven't seen them yet:
- Have you experienced VNS flipping due to significant weight loss?
https://connect.mayoclinic.org/discussion/vns-flipping-due-to-significant-weight-loss/
Will a dead Vagus Nerve Stimulation (VNS) battery do me harm?
https://connect.mayoclinic.org/discussion/battery-battery/
Sending good thoughts your way and keeping my fingers crossed for you! 🤞
Chris
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2 Reactions@santosha
My son had had a VNS since 1998 - a long time with no problems. His condition is so severe that the device is set to activate every 30 seconds resulting in shorter battery life. So his battery usually lasts less than 2 years and the battery must be surgically replaced. His VNS device has never moved or flipped out of place. If that were to happen they would probably reposition the device when hey replace the battery.
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6 Reactions@happyrivers9 has it lessened his seizures at all? or the intensity? how has he felt with it has he changed in any ways? thank you for the reply!
@maureendigi
VNS has helped him - 20-30% fewer seizures and less intensity; however his VNS was placed 18 years ago. It helped him more the first few years. One side effect is being hoarse when speaking but that wears off and isn’t a problem. He now has a VNS and 2 years ago a brain stimulator was surgically implanted. I think the brain stimulator is usually used to treat uncontrollable seizures. The brain stimulator is helping him a lot with fewer seizures but he has all kinds of seizures and takes 3 or 4 different seizure medications. The medications can cause dizziness- which he has sometimes struggled with. He has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS). A rare and severe form of epilepsy that usually begins in early childhood. LGS is a difficult to treat epilepsy that causes multiple types of seizures and can affect learning and development.
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3 Reactions@happyrivers9
I'm sorry to hear your son has LGS. I'm sure thats very challenging for him and your family as well.
I'm curious about which seizures the neuromodulators are helping?
If I remember he has tonic and clonic seizures along with tonic-clonics. Were these modulators put in primary for focal or the tonic-clonic, tonic & clonics. Are they effective for one seizure type moreso than others?
I thought these devices became more effective over time? It sounds like that's not the case for him.
Best of luck,
Jake
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2 ReactionsHi @happyrivers9
Thank you so much for joining this conversation and sharing your son's VNS experience with @maureendigi 💜.
You mentioned that 2 years ago a second brain stimulator was surgically implanted, keeping the VNS. Did I get that right? Do you mean DBS (Deep Brain Stimulation ) or RNS (Responsive Neurostimulation)?
What wonderful news that his seizures have reduced even more with this second device — that must be such a relief for your whole family 🙏!
Chris
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@santosha
He has 2 devices now a VNS and a DBS - Deep Brain Stimulator. The DBS has a rechargeable battery that we charge once a week. It has a remote control that can chart seizures (You have to press a button to let the device know a seizure is taking place.) The remote can control the intensity and frequency of stimulation which we can set ourselves when the doctor orders it. Otherwise we don’t change it.
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