was it worth it

[Catahoula]

people that went through with brain surgery to stop your seizures, was it worth it?

I need to decide if I should remove my left temporal lobe for a chance to eliminate my seizures.

 

[CQ:)]

But for me I'm glad I had the surgery, which I had in 2011.

Prior to my surgery I was I was having simple complex partial seizures and the odd tonic clonic.

I was 2 years seizure free until I started having simple partial again.
But my seizures are nowhere as bad or as often as they were.

Good luck with whatever decision you make

 

[Catahoula]

But for me I'm glad I had the surgery, which I had in 2011.

Prior to my surgery I was I was having simple complex partial seizures and the odd tonic clonic.

I was 2 years seizure free until I started having simple partial again.
But my seizures are nowhere as bad or as often as they were.

Good luck with whatever decision you make

I'm told I have scaring, but it will be the amygdala and hippocampus that is removed which comes with some consequence ?

How bad is the short term memory loss, or the effects on emotions/feelings, issues with language and vision?

 

[Bubble]

Does anyone here have experience with VNS treatment? It's only minimally invasive, but any kind of surgery can come with complications, so I thought this might be a good place to ask.

 

[CQ:)]

I'm told I have scaring, but it will be the amygdala and hippocampus that is removed which comes with some consequence ?

How bad is the short term memory loss, or the effects on emotions/feelings, issues with language and vision?

Mine was left front temporal lobe

You are correct, all Surgeries come with a risk. I cant remember the % I was g8vrn m t surgery would work maybe 90, 95 but they did tell mr the risks as well

Its more just short term, if someone tells me something if i don't write it down I'll forget it.
The surgeons shaved near where they needed to move the Scull an scarring so I grew my hair. Nobody would know unless I moved my hair, except the 1st week I think I keep the hair away until the staples were removed

 

[CQ:)]

Does anyone here have experience with VNS treatment? It's only minimally invasive, but any kind of surgery can come with complications, so I thought this might be a good place to ask.

There are a few people who have had vns

I'm hoping they'll come on and help

 

[Catahoula]

But for me I'm glad I had the surgery, which I had in 2011.

Prior to my surgery I was I was having simple complex partial seizures and the odd tonic clonic.

I was 2 years seizure free until I started having simple partial again.
But my seizures are nowhere as bad or as often as they were.

Good luck with whatever decision you make

when you started having seizures again, were you given other options, or was medication the solution? was it a solution? do you currently have seizures?
I'm beginning to believe, my hopes of becoming seizure free and medication free is unrealistic. this medication beats the $#!+ out of me, but if I can reduce it, it may not beat me so badly?

 

[Bubble]

There are a few people who have had vns

I'm hoping they'll come on and help

Thank you, I hope so too ^^

 

[CQ:)]

when you started having seizures again, were you given other options, or was medication the solution? was it a solution? do you currently have seizures?
I'm beginning to believe, my hopes of becoming seizure free and medication free is unrealistic. this medication beats the $#!+ out of me, but if I can reduce it, it may not beat me so badly?

Prior to my surgery I was seeing a regular neuro in my small home town.

Then he referred me to a epioloigist in the city who confirmed I was a good candidate for surgery. That was 2019, at the time I was on about 3 or 4 epilepsy meds at the highest level

The specialist in the city never slowly lowered my meds until I was on 1 or 2.
After the surgery they lowered meds to 1, they were never going to take me completely of meds as there was risk I would have a tonic clinic.

After the surgery I was about 2 years seizure free until I started having focal seizures, mainly auras. My meds were slowly increased. Im on more meds but only low dosage.

I haven't had a seizure for a few months

 

[Heavy Kevy]

My surgery was absolutely worth it. I went from 30 seizures the year prior. Down to 4 the following year.
Keep asking questions, and stay strong. Best of luck

 

[Porkette]

My surgery was worth it all the way. I knew the surgery was only going to decrease my seizures but
going from 300 seizures a yr. to 42 seizures last year was well worth it for me and I have a lot more
energy taking less meds. Wishing you only the best and May God Bless You,

Sue

 

[Army Vet]

Does anyone here have experience with VNS treatment? It's only minimally invasive, but any kind of surgery can come with complications, so I thought this might be a good place to ask.

I have a VNS. I had my first one in 2016 and a replacement in 2021. It runs off of a battery so it has to be replaced every so often. I think my current one is sneaking up on needing a replacement. I'd say it has helped. Especially when I’m either having a seizure or when I feel an aura. My mom usually swipes my magnet and I come out of it within 60-90 seconds. Before the VNS it might last longer. Plus it helps on the after effects of one. I would be VERY tired for at least a day and couldn't do anything but sleep. Now I mostly come back to normal (whatever that is). My seizures have been fewer, but I still have (on average) one a week. The biggest complaint I'd have about it is that it does cause dry mouth and I have to clear my throat every so often.

 

[Bubble]

I have a VNS. I had my first one in 2016 and a replacement in 2021. It runs off of a battery so it has to be replaced every so often. I think my current one is sneaking up on needing a replacement. I'd say it has helped. Especially when I’m either having a seizure or when I feel an aura. My mom usually swipes my magnet and I come out of it within 60-90 seconds. Before the VNS it might last longer. Plus it helps on the after effects of one. I would be VERY tired for at least a day and couldn't do anything but sleep. Now I mostly come back to normal (whatever that is). My seizures have been fewer, but I still have (on average) one a week. The biggest complaint I'd have about it is that it does cause dry mouth and I have to clear my throat every so often.

Glad to hear it's been mostly a good experience for you. How often did you get seizures before getting the VNS, if asking is okay?

 

[valeriedl]

Does anyone here have experience with VNS treatment? It's only minimally invasive, but any kind of surgery can come with complications, so I thought this might be a good place to ask.

I'm on my third VNS, I got my first one in 2007. As Army Vet said the whole VNS has to be replaced when the battery dies. I never had any problems with the surgeries.

It reduced my seizures greatly. Before I got it I was having over 15 seizures a month. After the settings were figured out on the VNS and what meds and dosages I would take I was having probably half of that. Now I have around three seizures a month and they aren't nearly as bad as they were through the years. My neuro has still changed the settings and meds through the years too.

 

[Bubble]

I'm on my third VNS, I got my first one in 2007. As Army Vet said the whole VNS has to be replaced when the battery dies. I never had any problems with the surgeries.

It reduced my seizures greatly. Before I got it I was having over 15 seizures a month. After the settings were figured out on the VNS and what meds and dosages I would take I was having probably half of that. Now I have around three seizures a month and they aren't nearly as bad as they were through the years. My neuro has still changed the settings and meds through the years too.

That sounds nice, I'm happy the surgeries have been unproblematic.

Did you reduce the meds at all, since you said they got changed?

 

[valeriedl]

That sounds nice, I'm happy the surgeries have been unproblematic.

Did you reduce the meds at all, since you said they got changed?

Yes my meds and dosages were reduced. Through the years my meds have been changed in general. The neuro felt different meds would work better, and they usually did. I've had epilepsy for 22 years and I've been on several different meds through the years. My last change was about 3 years ago when I switched from Keppra to Xcopri. The man reason for that change because I couldn't handle the Kepprage side effect from the Keppra.

 

[Bubble]

Yes my meds and dosages were reduced. Through the years my meds have been changed in general. The neuro felt different meds would work better, and they usually did. I've had epilepsy for 22 years and I've been on several different meds through the years. My last change was about 3 years ago when I switched from Keppra to Xcopri. The man reason for that change because I couldn't handle the Kepprage side effect from the Keppra.

That's great to hear. Yes, been there, done that, can't recommend Keppra either. I'm glad you found a good alternative