what to do next

[Catahoula]

I have 3 options now, looking for people to discuss the severity of the surgeries.

 

[Catahoula]

perhaps I should say HELLO to everyone first...... I hope all is well with everyones struggles, I know it is REAL.

 

[valeriedl]

What surgeries would like to talk about? I have a VNS and RNS.

 

[CQ:)]

Yes as Valerie asked what surgeries are looking at?

I had brain surgery to remove scarring in my left front temporal lobe.

I was seizure free for 2 years but then I started having simple partial again.
I am still taking simple partials but no where near as much what I was.

Good luck with your decision

 

[Catahoula]

I've been given the option to remove my front left temporal lobe as a 50% chance of eliminating my seizures, or VNS they give me a 10% chance. My goal is to get off the meds, the more I research the more I see that getting off the meds may not be a realistic possibility.
I want to know how life after removal of the lobe is? how much did life change? will I learn new things ie: at work? I haven't found anyone that has stopped taking 100% of their meds after any surgery nor has it stopped the seizures?
At first I was like ok lets do this removal of the lobe, the more I look into it, now I have reservations.

 

[Catahoula]

What surgeries would like to talk about? I have a VNS and

can I ask why both VNS and RNS?

 

[valeriedl]

can I ask why both VNS and RNS?

I have had a VNS for about 18 years. It lessened my seizures a ton when I first got it. I was still having seizures, not nearly as many, and taking meds though. I started seeing a new neuro last year and he suggested getting an RNS also. I got it the at the first of the year and we're still working on the settings. He's hoping to reduce my seizures even more and hopefully get me off of more meds.

 

[RTL]

At 22 years, my experience may be a bit dated, medically speaking, but see below:

TLE Surgery

Kevin

 

[Bubble]

D

I have had a VNS for about 18 years. It lessened my seizures a ton when I first got it. I was still having seizures, not nearly as many, and taking meds though. I started seeing a new neuro last year and he suggested getting an RNS also. I got it the at the first of the year and we're still working on the settings. He's hoping to reduce my seizures even more and hopefully get me off of more m

Did you get any side-effects, from the VNS? Short term and/or long term? Thanks for sharing!

 

[Catahoula]

At 22 years, my experience may be a bit dated, medically speaking, but see below:

TLE Surgery

Kevin

WOW! thank you for this!

I spoke with my surgeon yesterday, I am certain I've made the decision to go through with my left temporal lobectomy, I will inform the clinic today, and it sounds like I will get in for surgery in the next 2 months or so.

Thank you to everyone that uses this site. I have read a lot, learned a lot. I was one that thought/assumed/wished that surgery would be the cure to my seizures and my goal was to be off medication one day. Now I have a better understanding of what my expectations should be, and accept it.

 

[Porkette]

Hi Bubble,

I had surgery back in 1994 and my surgeon removed 75% of my right temporal lobe and all of my right hippocampus
to reduce my seizures. I went from 300 seizures a yr. down to 42 seizures last yr. and most of those seizures were absence
seizures. I had to stay awake during most of the surgery because the Dr. was testing me asking me if I could feel things when
he would prick me with a pin and he had me reading index cards and doing math during the surgery.

Today they have the gamma knife surgery and it's same day surgery it's used for both epilepsy and brain tumors.
It's just high frequency radio waves that wipe out the damaged area of the brain and if all goes well you go home
the same day as the surgery but sometimes if a person gets to much radiation they will ask you to stay overnight.

I wish you the best of luck and May God Bless You,

Sue

 

[valeriedl]

D

Did you get any side-effects, from the VNS? Short term and/or long term? Thanks for sharing!

I'm on my third VNS only because of the battery. When the battery needs replaced the whole VNS is replaced. My first battery lasted 7 years and the second 11 years. Long story short with the second one it should have been replaced much sooner because the battery was preictally dead when I started seeing my new neuro. Everyone's battery can last differently depending on the strength and the frequency it goes off.

The only side effect, if you consider this a side effect, is that when the strength of the battery is changed you get a little bit of tickle in your throat when it goes off. It only lasts about a day, if even that long, then you get used to it. Other than that I've never had any problems.

 

[Catahoula]

I'm on my third VNS only because of the battery. When the battery needs replaced the whole VNS is replaced. My first battery lasted 7 years and the second 11 years. Long story short with the second one it should have been replaced much sooner because the battery was preictally dead when I started seeing my new neuro. Everyone's battery can last differently depending on the strength and the frequency it goes off.

The only side effect, if you consider this a side effect, is that when the strength of the battery is changed you get a little bit of tickle in your throat when it goes off. It only lasts about a day, if even that long, then you get used to it. Other than that I've never had any problems.

my Neuro informed me if I chose to go VNS the battery would require replacing every 5 years.