Hi - New here. Am looking for information on Surgery / VNS and Todd's Pararis

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StephMol

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Hi, I am a 43 year old women living in South Africa. I was diagnosed with Partial Epilesy about 2 years ago, having seizures on average every 2 days (still do). I have tried over 4 medications in various combinations (Epilim / Keppra/ Limictal / Triliptal - currently on 900mg Epilim and 900 mg Triliptal) and am now going for Video EGG monitoring to assess viability for an opperation as my Neurologist has recently determined that I have Intractable epilepsy. If I am not viable for the opperation, I will then be looking at a VNS. I would like to learn more about epilepsy and these proceedures, as I do not know anyone who is or has been through what I have here in South Africa. I also have Todd's pararis that occurs in my one leg with a seizure.
There are numerous frustrating factors about having epilepsy, but for me the most frusting is not being able to drive and having to stay as home as much as possible inorder to avoid as many triggers as possible. But I am very hopefull that with either surgery (a bit of a scary thought) or the VNS implant that there will be an improvement.
I have never been on a forum so I hope I get this right! For now i would like to know what questions I should be asking the doctor re the video EEG / Opperation and VNS, seeing him for my first consultation on Tuesday. Also does anyone else have Todd's parasis. I find this very embarassing as I look like I am half druck half crippel when it happens. Thanks
 
Hi StephMol,

Welcome to CWE, you'll find it a great forum with lots of support.

I have had epilepsy pretty much most of my life, I had my 1st tonic clonic seizure when I was 9 months old & took tonic clonics on a regular basis until I was about 3.
I then went 21 years seizure free until my seizures returned in 2002 when I was 24.
After my seizures returned I mainly took simple/complex partial seizures, my neurlogist tried me on 5 AEDs but none would completely control the partials.
My neurologist had MRIs done, all of which showed scarring on my left temporal lobe.
At the end of 2009 he suggested I think about having brain surgery & referred me to a epiologist, I met the epiologist mid 2010 then once he confirmed he thought I was a good candidate for surgery I went through pre surgery tests.
I found out at the end of 2010 that I could have the surgery & on 10 March 2011 I had the surgery where the neurosurgeons removed the scarring on my left temporal lobe.

Next Monday is my 3 year anniversary & the only issue I have had is I sometimes get funny feelings mainly when I am tired or stressed. I am due to see my neurologist at the end of March for a follow up appt, the funny feelings have changed over the last few months so I will be discussing it with my neurologist.

Good luck with your VEEG.

There are a few members on here who have had either brain surgery, VNS or both so you are sure to get some good information.
 
I don't know if you have checked out the laboratory part of the forum but if not it might be worth while checking ti out as there are a lot of discussions about surgery.

Here are some threads which might be of interest -

http://www.coping-with-epilepsy.com/forums/f41/almost-time-11741/

http://www.coping-with-epilepsy.com/forums/f41/reality-starting-sink-20273/

http://www.coping-with-epilepsy.com/forums/f41/goodbye-epilepsy-21599/

http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/
 
HI CQ.
Thanks for the info. What were the pre surgery tests? My Neurologist mentioned that testing could include lifting the sculp and placing the pads? or something directly on the brain. Do you know what would make a person not viable for surgery?
 
HI Steph,
I just want to say we are all different so I believe it is up to our specialists & our circumstances as to which pre surgery tests we have. Also I always tell people thinking about brain surgery that the surgery is not a cure but more another treatment to help control seizures. For me the surgery has helped with my seizures but there are some members who have had surgery & it has been unsuccessful.

StephMol said:
HI CQ.
Thanks for the info. What were the pre surgery tests?
Click to expand...
The pre surgery tests that I had were -
PET Scan, SPECT Scan, MRI, a week long VEEG, eye test & neuropsychological evaluations which included memory /concentration tests.
After I had the VEEG the epiologist wanted me to also have a fMRI (functual MRI) which is longer & more envolved then a regular MRI.

StephMol said:
My Neurologist mentioned that testing could include lifting the sculp and placing the pads? or something directly on the brain.
Click to expand...
I'm sorry I can't help you in regards to that test but I'm sure someone else will be able to help you there.


StephMol said:
Do you know what would make a person not viable for surgery?
Click to expand...
They usually need to find where the seizure activity is coming from before they can consider the surgery. From my understanding if the seizures are coming from both sides of the brain or they can't find where the seizures are coming from then that may reduce a persons chance of having surgery.
 
StephMol said:
What were the pre surgery tests? My Neurologist mentioned that testing could include lifting the sculp and placing the pads? or something directly on the brain. Do you know what would make a person not viable for surgery?
Click to expand...

Hi StephMol,

I had epilepsy for 10 years and after trying several meds, my dr. sent me to an EpiCare center for testing for brain surgery. I had the brain mapping done. It is sort of a brain surgery in itself, if you want to call it that, for identifying different functional area in one's brain. This site explains it better: http://www.epilepsy.com/epilepsy/surgery_brainmap

After going thru this testing ^, plus the WADA test, (for more info, check this out: http://www.epilepsy.com/epilepsy/surgery_wada) I finally had a Left Temporal Lobectomy. I was seizure free for 14 months. So after they seizures cam back, the neurosurgeon was looking at taking me in for another surgery. But after closer examination, another brain surgery was NOT an option for me. The damaged area was deep in the hippocampus and if they were to go there, the surgeon said I could end up like an end stage Alzheimer patient, unable to speak or remember a thing. And my memory is already somewhat impaired from surgery and seizures.

So after years of more seizures after the brain surgery and trying many more meds, I had the VNS put in.After my brain surgery, things were SO chaotic, but the VNS has calmed down the seizures and the moods. I've now had it for 11 years. A year ago I had my 3rd battery replacement. It has helped tremendously reduce my seizures. I would recommend the VNS over BRAIN surgery any day. They can turn off the VNS if you don't like what it is doing. You can NEVER go back and undo the harm that's been done with brain surgery. Just my opinion.
 
Hello! I had a vns implanted recently and have been documenting my experience with it. (my vns experience). CQ very kindly put a link to it in his 2nd post in this thread, so I will just refer you to that. I think it says most of what I have to say about vns, and gives a lot of other comments, as well. Having refractory partial epilepsy should make you a good candidate from that perspective. Best of luck! Keep in touch!
 
I've had epilepsy for almost 11 years. Because of where the damage is in my brain I was unable to have surgery so my neuro suggested a VNS.

I got my first one in 2007 and second, because the battery needed replaced, this January.

It has helped me a good bit. I'm still having seizures but it has reduced the amount that I have and they aren't as bad. I'm also still taking medicine too.

The posts above are good ones to read to learn more about the VNS.
 
Hi StephMol,

I, too, have had surgery. Twice. First one in 2001, I had almost 11 years seizure freedom, until they came back. I was lucky enough to be a candidate for a second surgery to 'finish the job.' Remove the remaining portion of my hippocampus that was wreaking havoc. My second surgery was April 29, 2013, so I'm at 10 months seizure-free, and looking forward to counting the years again. All the best to you!
 
Hi. Thank you all for your posts. This community has a wealth of information and I am trying to absorb as much as I can. As soon as I have time i will follow all the links and carry on reading. It has taken me 2 hours to follow just 1 thread and make notes (am quite forgetfull) so will be back ASAP to carry on. Thanks again :hugs:
 
Hi, Steph. I also live in SA, but I've moved from Jo'burg to Cape Town. I only had the ambulatory EEG there, which was meant to precede a lobectomy before VNS existed. I got too scared of the surgery option so I kept on trying with the meds. That was ages ago, and I did enjoy a few years with control on meds. I'm going to have VNS next year when I'm allowed to upgrade my medical aid to cover it. I'm curious about which neurologist and neurosurgeon you're seeing up there? I was with Dr Giampaolo and Dr Shah.
 
Hi Kirsten
So nice to come across someone in SA? I have been with dr Giampaolo for the last year and a half. He has now sent me to dr Anderson who runs the epilepsy monitoring unit with his team of specialists at Milpark hospital. I met with him on Tuesday and he has booked me into the unit for video EEG from Monday. So first step with him is to take me off the meds in first 2 days and see what seizures I am having. Then take it from there.
 
Hi Kirsten
Sorry, what is the Ambulatory eeg? I am so new to all these terms. I tend to just take 1 day at a time and haven't really done a whole stack of research.
 
That's great, Steph. Dr Giampaolo is, I think, the best neuro for epilepsy in the country and one of the best in the world. Ambulatory is the monitoring you'll do at Milpark. That's where I had mine done, but under Dr Shah. Not sure if she's still there. They'll hook you up to an EEG, but instead of the gel, they'll use a kind of glue, and then they'll have a video camera on you while you're there. When I was there there was a nursing sister in a connected room, so I was never alone. In those days the unit was the only one in SA and had only one machine. They might have made the whole thing bigger by now. I'm confident that you'll do well with Giampaolo. He certainly took good care of me. You never need to worry about not getting the care you need with him.
 
Hi StephMol, welcome to CWE.

It was made by Bernard out of love for his wife Stacy. That love permeates every part of the forum.

I have had epilepsy for 63 years. Some people have had surgery and it was successful. Other's have had surgery and complications have set in. I just started a thread on it. I doubt if I will have it done.

When the VNS first came out, my neurologist wanted me to have it done. I wanted more information. My neurologist had all of the people with epilepsy to come and get the info about it. I decided not to have it done.

It is the rule of 3's. The first one is that 1/3 will have a successful implant and it will work. However, if it quits working, they cannot take it out.
The 2/3 is that it works some times.
The 3/3 is that it does not work at all.

I did not like the odds.

The video/EEG is safe and a good idea. I recommend it for everyone.

If you are just having partial seizures, I would wait before I had an operation. First, let us know what the video/EEG shows. They might want to do a MRI. That will not harm you, unless you are claustrophobic. MRI stands for Magnetic Resonace Imaging.

I hope I have helped you. There are people from all over the world here. Feel at home.
 
Ruth said:
When the VNS first came out, my neurologist wanted me to have it done. I wanted more information. My neurologist had all of the people with epilepsy to come and get the info about it. I decided not to have it done.

It is the rule of 3's. The first one is that 1/3 will have a successful implant and it will work. However, if it quits working, they cannot take it out.
The 2/3 is that it works some times.
The 3/3 is that it does not work at all.


If you are just having partial seizures, I would wait before I had an operation.
Click to expand...

The same rule goes for brain surgery. Some have great success. Some have none at all. And for some, the surgery makes the seizures worse.

The VNS is for partial seizures and I did have mine put in AFTER my failed brain surgery. They cannot take the VNS out if it does not work, however, it can be turned off. And like I said before, with brain surgery, there is NO turning back!
 
My understanding is that the vns unit itself can be removed, but the leads cannot be unwrapped from the nerve because they can get overgrown with tissue.
 
Hi,

I did some research on the VNS.

http://www.epilepsyfoundation.org/aboutepilepsy/treatment/vns

I looked under surgery and it says that the flexible silicone leads are wound around the vagus nerve during surgery.
The Epilepsy Foundation also has a FAQ section. It would be worth your while to go over them.

I also went to the maker of the VNS, Cyberonics.

http://www.us.cyberonics.com/en/vns-therapy

http://www.cyberonics.com

arnie, I have heard from others that their implant cannot be removed. The information from the Epilepsy Foundation, under FAQ's says that it can be replaced.

I do not think that it cannot be replaced because the Vagus Nerve is a major artery.

Where did you get your information? It is important to most people in the forum to have this information. If it is from your neurologist, ask where he/she got the information.

Thank you
 
Ruth, can I just clarify what you're saying? I'm a little confused. I'm hearing you say that your info says the VNS can be replaced? I'm struggling to understand this sentence: "I do not think that it cannot be replaced because the vagus nerve is a major artery." As an aside, the vagus nerve must be a nerve, not an artery. Are you saying the vagus nerve has a major artery running alongside it?

Also, if it can be replaced, can it also be removed? (I'm speaking specifically about the unit, and not the leads. I wouldn't be too concerned about the leads being left in but it'd be good to know the unit could be removed as it seems to cause some discomfort.
 
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