At a crossroads...

[rjsulliv79]

Hey folks-here's my low down. I have refractory epilepsy. Columbia University's Epilepsy Center admitted me for a 6 day stay in November. They induced 3 seizures (1 simple and 2 complex partials)! I was amazed since I usually have seizures once every 2-3 months. Well it turns out that the front portion of my right temporal lobe was lighting up the EEG like crazy. I met with my Neurologist 2 weeks ago, and she stated that on a preliminary basis, surgery may be the best option for me. However, the faculty at Columbia has to meet to discuss my case before its members provide a conclusive treatment plan. If surgery is on my herizon, a stereotactic EEG would be a first step, to rule out any epileptogenic activity in the mesial temporal lobe. Anyone go through a stereo eeg? What's it like? Damn this is surreal.

 

[photoguy]

Hi rjsulliv79,

I just went thru Stereotactic surgery, both depth and grid electrodes, in August. I did end up having part of the right temporal lobe resected. Things are good. Columbia is a great center. Still scary though. Good luck. Ask anything you like, I'll try to answer best as I can...

 

[rjsulliv79]

Thanks photoguy. The thing I don't quite grasp is the severity of stereo surgery. My doc explained that grid electrodes require a craniotomy. However, how are the stereo nodes implanted? Are there multiple locations that they will create an opening in my cranium? Are they uncomfortable? How long was the recovery? My eeg showed that there was activity from the T8/F8 and T10/F10 nodes during the study. They discovered a physical abnormality in that region. Ultimately, I want to know the right questions to ask and take this head on!

 

[photoguy]

Great questions. The first step is the insertion of fiducials into the skull. Fiducials are short enough that they do not puncture through the skull, yet long enough so that they will not move. Yes, the grids do require a craniotomy. My grid was an 8x8, 64 electrodes total.
I went thru 3 surgeries. The first one put in two 12-contact depth electrodes, running posterior to anterior, one in the left and one in the right hemisphere. Entering through the back of the skull and running through the hippocampus.
The second surgery was the open craniotomy and put the 8x8 grid on the superior surface of the right temporal lobe. The right depth electrode stayed in. I also had a full 10/20 surface EEG running at the same time.
The third surgery removed the grid and depth electrodes and then a portion of the temporal lobe that was the initiation point for the seizures.

I think the points you reference as T8/F8, etc. are from a 10/10 EEG. I've got a diagram of that here... danepilepsy.weebly.com/emu-2.html

If that link didn't come thru I'll private message it to you.

I was out of work from mid July to mid October. So the recovery is long, but not really too bad, considering what was done.

 

[rjsulliv79]

Thanks, yup had to be 10/10 eeg. My epileptogist believes that I may only have to go through the stereo to localize the focus well enough to resect. If I had to go through two craniotomies, I may say screw it. Dostoyevsky lived a long time with complex partials. Two craniotomies sound intense, and they may find a medicinal approach one day.

But I digress, how is a stereotactic eeg evaluation performed? It it through a burr hole on the back of my cranium? Are the electrodes inserted through smaller holes nearer to the front of my right temporal lobe? I think they believe a piece or all of my right temporal lobe has to come out. The stereo test is there to find how much apparently. Sound right? Were you recommended for subdural testing immediately after the initial evaluation? It seems like they believe that the can localize without subdural. However, it was mentioned that if they have to place a subdural grid, they would conduct surgery during the same operation. I am willing to go through one craniotomy (Weird to just say that).

 

[Cint]

Thanks, yup had to be 10/10 eeg. My epileptogist believes that I may only have to go through the stereo to localize the focus well enough to resect. If I had to go through two craniotomies, I may say screw it. Dostoyevsky lived a long time with complex partials. Two craniotomies sound intense, and they may find a medicinal approach one day.

But I digress, how is a stereotactic eeg evaluation performed? It it through a burr hole on the back of my cranium? Are the electrodes inserted through smaller holes nearer to the front of my right temporal lobe? I think they believe a piece or all of my right temporal lobe has to come out. The stereo test is there to find how much apparently. Sound right? Were you recommended for subdural testing immediately after the initial evaluation? It seems like they believe that the can localize without subdural. However, it was mentioned that if they have to place a subdural grid, they would conduct surgery during the same operation. I am willing to go through one craniotomy (Weird to just say that).

I had to have both surgeries, but mine was done back in 1990, so things weren't as successful back then. I was only seizure free for 14 months. Even so, when the surgery is done on the right side, it is somewhat more successful. Mine was on the left side. And they used to tell patients they would know for two years if the surgery would be successful or not. My seizures started deep in my left hippocampus, so they did the subdural testing after the initial testing. Back when I had mine done, the testing and the actual lobectomy were two separate surgeries, so I had two craniotomies. I only had the surgery in the first place because I was having 4-5 CP seizures a day. If I was only having seizures once every 2-3 months, I'd say no way is anyone going to cut my head open when there is NO guarantee it works.

For more info on the surgery/EEG electrodes, check this out:
http://www.epilepsy.com/information...is-treatment/surgery/implanted-eeg-electrodes

 

[rjsulliv79]

Cool thanks Clint. You're right on my wavelength. This is exactly where I am at. I am having these seizures enough where they affect my quality of life, but I may be able to live with it. I crashed two cars, so I can't drive. I've had seizures on NYC subways during rush hour but lived. I could be a city dweller my whole life.

Also the seizures might be better managed for at least a little while longer with my recent meds change. Right now I am on 400mg Vimpat (Lacomaside) and 20mg Onfi (Clobazam) a day, both heavy hitters. When they took me off the Vimpat during Phase 1 evaluation, they were able to evoke 3 seizures and find a focus in my right temporal lobe. They then added on he Onfi for safe measure. The drugs are strong and seem to working for now. I also was on Keppra for 4 years, and it did not work. Keppra and Vimpat failed to control the seizures. The doc at Columbia said that after failing 2 meds, there is less than 10 percent chance at control. However, she stated that there a 70% chance of seizure control with surgery (a conservative estimation in her view), and she guaranteed improvement.

That's the source of my quandary. Also, my most recent MRI images show something abnormal right where the focus is, apparently. I have to meet with the group in February. They put my case in front of a panel of faculty there to recommend treatment. It's been a wild ride!

 

[Kgartner]

You are the first person here who is on the exact same medications as my daughter! However, she started with the Onfi and added the Vimpat. Onfi alone was not working at all, even at a dosage of 50mg/day - she was having simple partials daily, and had tonic-clonics in both October and November. Since her VEEG last month she added Vimpat, and is now up to 300mg/day; we've also reduced her Onfi down to 45mg/day and will hopefully be able to get it lower.

Is the combination working for you so far? Her simple partials are reduced in both frequency and intensity, but she is still having them several times a week. And as long as she is having auras I worry that one of these days it will progress to a bigger seizure; that's what happened on the Onfi. She has never (so far) just had a complex partial - if it progresses past an aura to a complex partial it always immediately secondarily generalizes - so it is just so worrying. However, I am not sure I will want to increase her Vimpat over 300mg/day because she is so exhausted and getting very frequent headaches. I am hoping that it gets better over time (she's only been at 300mg for 10 days), but this is the worst reaction she's ever had to a med increase.

I will be very interested to hear more about your process and decision making. Her MRI is normal, but they apparently saw lots of activity when they did a MEG last week and all her seizures and seizure activity originate in her left temporal lobe. We are continuing to move forward with surgical evaluation - next is a visual field test and neuropsych evaluation. Is a stereotactic EEG the same thing as a iEEG? Her doctor has not mentioned that yet, but I expect that they will want to do something like that with her as well.

Please keep us posted. There are a lot of us in this process right now!

 

[Cint]

The doc at Columbia said that after failing 2 meds, there is less than 10 percent chance at control. However, she stated that there a 70% chance of seizure control with surgery (a conservative estimation in her view), and she guaranteed improvement.

Well then, I am in that 30% that suffers from Refractory Epilepsy, even after surgery, so I think it is rather presumptuous for your doc at Columbia to "guarantee" any improvement. There are NO guarantees, even after brain surgery.

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/surgery-expectations

What should a person expect from epilepsy surgery?

It is critical for the patient and family to have realistic expectations of the results of the surgery. Here are a few things to consider.

~After surgery, some patients become completely seizure-free and some have no improvement at all.

~Many people fall between these extremes, having fewer seizures or seizures that are less intense.

~Some people may be able to lower or simplify their medicines if seizure control improves. People who become seizure free after surgery may be able to come off medications if they are seizure free for a number of years.

There is NO turning back after brain surgery. And there is memory loss for some, word retrieval problems (aphasia), depression for some and other issues too, that are life long.

 

[Kgartner]

Well then, I am in that 30% that suffers from Refractory Epilepsy, even after surgery, so I think it is rather presumptuous for your doc at Columbia to "guarantee" any improvement. There are NO guarantees, even after brain surgery.

That is for sure. As far as I can tell, there are no guarantees with epilepsy at all!

As with everything else, it is a matter of a risk/benefit analysis. That is why getting as much information as possible (both general information and information about your specific situation) is so very important. Ask for straight talk.

 

[Cint]

That is for sure. As far as I can tell, there are no guarantees with epilepsy at all!

As with everything else, it is a matter of a risk/benefit analysis. That is why getting as much information as possible (both general information and information about your specific situation) is so very important. Ask for straight talk.

There are NO guarantees, even when it comes to getting info about one's specific situation. Two docs can tell one person different things about the same situation. That's why sometimes a person needs more than a 2nd opinion.

Asking for and getting what you ask for are two different things! The docs are well trained to tell you only as much as you want to know, and they like painting a rosy little picture. They don't know what the outcome will be in every circumstance, based on general information. Everyone is different.

You're just in the beginning phase(s) of finding answers for your child, Kgartner. I did ask for straight answers at the time. They did not have the answers. So let me know when you have the answers to the straight talk.

 

[Kgartner]

There are NO guarantees, even when it comes to getting info about one's specific situation. Two docs can tell one person different things about the same situation. That's why sometimes a person needs more than a 2nd opinion.

Asking for and getting what you ask for are two different things! The docs are well trained to tell you only as much as you want to know, and they like painting a rosy little picture. They don't know what the outcome will be in every circumstance, based on general information. Everyone is different.

You're just in the beginning phase(s) of finding answers for your child, Kgartner. I did ask for straight answers at the time. They did not have the answers. So let me know when you have the answers to the straight talk.

Cint I have learned during this journey that with epilepsy "answers" are few and far between. I do not expect answers or guarantees and I don't know why you think that is what I said - I said "information" not answers. It doesn't take a long time with epilepsy to see that not only is every situation different, but each person reacts in a idiosyncratic way to both medication and every other intervention they have. So all of us - doctors, parents and patients - just try to weigh the risks and benefits and make the best decision we can. If you think it is difficult to make these huge decisions for yourself, try making them for your child. It is heartbreaking no matter what.

I have a friend with a very different perspective than yours. Her son was recommended for surgery as a teen, but they did not do it. In his early 20's his epilepsy progressed and worsened and he began to have drop seizures in addition to the focal seizures he was having before and he is now more or less completely disabled. They are going ahead with surgery now, but it is considerably more complicated than it would have been years ago. She has many regrets about not doing surgery earlier. So there are no guarantees with staying the course either.

I have said many times that we are at beginning of our exploration of the surgery option, and I don't know why you feel the need to keep pointing that out. I often feel like you take a lecturing tone in your responses and I would appreciate it if you would refrain from that. I spend HOURS reading through journal articles trying to understand (to the best of my ability) what the different risk factors are and what will give us the best chance of the best outcome. I ask my daughter's doctor not only for their opinion, but for the actual results of the tests. I am not walking forward blindly or with rose-colored glasses on. They fell off a few months ago.

Surgery is not a guarantee - and I certainly don't expect it to be! - and I do appreciate your perspective. But it is a good answer for many people and I am trying to figure out if my daughter is one of them. We are all just doing the best we can to navigate a very very difficult situation.

 

[Cint]

I often feel like you take a lecturing tone in your responses and I would appreciate it if you would refrain from that.

You're the one who thru in the response to me after I responded to rjsulliv79 posting.

And I often feel like you are a reprimanding mother trying to tell me there are better treatments/options out there and I just made the wrong decision. So I would appreciate it if you would refrain from telling me what's available.

I've known a few who had the surgery, to no avail. And others here on CWE had the surgery with success.

I spend HOURS reading through journal articles trying to understand (to the best of my ability) what the different risk factors are and what will give us the best chance of the best outcome. I ask my daughter's doctor not only for their opinion, but for the actual results of the tests. I am not walking forward blindly or with rose-colored glasses on. They fell off a few months ago.

And my rose-colored glasses fell off years ago.

 

[Kgartner]

Cint - In my comment I was actually agreeing with you that there are no guarantees! I quoted you with an approving comment!

I'm sorry - I know you have been through so many things and have much to contribute. I am certainly not trying to reprimand you at all about the decisions you made in your treatment (honestly, I am not even sure what decisions you are referring to). And I'm not sure when you thought I was telling you what's available - as far as I can tell you have tried everything out there, and I certainly wouldn't presume to do that. I feel like sometimes you misread my posts as being argumentative when I'm just trying to answer people's questions.

But if you felt like I was questioning your judgement about decisions you made, I apologize. That was not my intention.

With refractory epilepsy I think our rose-colored glasses all fall off sooner or later.

I wish you nothing but the best. As I said, we are all just navigating a difficult situation as best we can.

 

[rjsulliv79]

All points taken. I plan on getting a second opinion no doubt. I feel confident that Columbia has their stuff down pat, but I believe that I have the option to get a second opinion from NYU Langone. I will definitely push for it. And I correct myself, my doc did not guarantee improvement. However she said there was a very good chance of improvement over the 70% of cure. Why would a very reputable doctor say that and not be confident in the diagnosis? I'll know more when I see them in February. I may be blindly following "the best".

 

[rjsulliv79]

You are the first person here who is on the exact same medications as my daughter! However, she started with the Onfi and added the Vimpat. Onfi alone was not working at all, even at a dosage of 50mg/day - she was having simple partials daily, and had tonic-clonics in both October and November. Since her VEEG last month she added Vimpat, and is now up to 300mg/day; we've also reduced her Onfi down to 45mg/day and will hopefully be able to get it lower.

Is the combination working for you so far? Her simple partials are reduced in both frequency and intensity, but she is still having them several times a week. And as long as she is having auras I worry that one of these days it will progress to a bigger seizure; that's what happened on the Onfi. She has never (so far) just had a complex partial - if it progresses past an aura to a complex partial it always immediately secondarily generalizes - so it is just so worrying. However, I am not sure I will want to increase her Vimpat over 300mg/day because she is so exhausted and getting very frequent headaches. I am hoping that it gets better over time (she's only been at 300mg for 10 days), but this is the worst reaction she's ever had to a med increase.

I will be very interested to hear more about your process and decision making. Her MRI is normal, but they apparently saw lots of activity when they did a MEG last week and all her seizures and seizure activity originate in her left temporal lobe. We are continuing to move forward with surgical evaluation - next is a visual field test and neuropsych evaluation. Is a stereotactic EEG the same thing as a iEEG? Her doctor has not mentioned that yet, but I expect that they will want to do something like that with her as well.

Please keep us posted. There are a lot of us in this process right now!

Thank you Kgartner, I apologize for not responding to your questions earlier. And I will definitely keep you up to date with what happens to me over the next few months. I am on 400 mg of Vimpat. It did make me feel euphoric when I first started taking it. That faded but it did make me irritable and down at times. The onfi just makes me sedentary. The Vimpat was tougher to get used to tolerating, but it got better. I have full blown complex partials. At their severest, I would go unconscious with automatisms that would change with every seizure and the postictal confusion would last 5 minutes. The Vimpat did decrease the severity of the complex partials. I have not gone completely unconscious since I started Vimpat and the postictal state did get less severe. I am not sure if a sterotactic eeg is the same as an ieeg, but I'll ask my doc. One thing for me is they said they found a physical abnormality on the front of my right temporal love. This was not noticed on previous imaging studies. I think it may be important that image interpretation needs to be as thorough as possible. I've completed neuropsyc testing while in the first time. They didn't mention a wada at all! I'll make sure to keep u updated on what I learn. Have a happy holiday!