Path to Surgery and Phase III Video Monitoring

I have partial complex seizures and am currently undergoing tests to determine if I am a potential candidate for surgery.  I've had epilepsy on and off my whole life but have been consistently experiencing bi-monthly partial complex seizures for the last 8 years.   Over the last 8 years I have tried different combinations of multiple AEDs with the only success being  that they prevent me from having Gran Mal seizures.  The physical side effects of the medications and the emotional and social side effects of the condition led me to surrender my drivers license 9 months and undergo testing to see if I am a candidate for surgery.  (My neurologist of 7 years always felt I was safe to drive and thus never reported my condition to DMV, however, the neurologist at the epilepsy surgery center felt otherwise and informed DMV as soon as I told her about my condition.)  So I essentially have thrown all of my cards on the table - If I ever want to legally drive again I have to first qualify for and then undergo surgery, and then with any luck I'll be seizure free long enough for me to get my license back.   The lack of independence form losing my license is huge but it is not the only reason I am investigating the surgery option.   The AED side effects have phsycially, socially and psychologically changed who I am as a person and who my friends/family know me to be.  I'm depressed and exhausted and if there is any chance of a cure for my condition I want to go for it.

My wife, unfortunately, feels otherwise and does not want me to pursue surgery right now.  She's afraid of the potential complications and the long recovery period.

The success and potential complication rates seem to vary with each article/study that I read, but on average it seems that the rates for Temporal Lobe surgery are as follows:

* 70 - 85%   Complete Seizure Control 
* 10 - 15 %  Seizures continue but rate is reduced by 80-90 %

*  4%         Potential Complications  (partial loss of vision, brain swelling, memory loss, stroke/hemorrhaging(1%), death(less than .5%)

At this point I am still being evaluated as a candidate for surgery.  Last summer I spent one week in the hospital for Phase I Video EEG monitoring (non-invasive).  I've undergone psycho-neurological tests, a couple of MRI's and had an MEG test done. The doctors determined that I have epileptic spikes coming from two different parts of my right temporal lobe and feel that I should proceed on to Phase II/III Video EEG Testing (invasive).

Phase II:  Foramen Novale electrodes inserted through my cheeks.
Phase III: Subdural electrode strips inserted through two bore holes in my skull  

The notion that I would volunteer for a procedure that involves drilling holes in my skull really shocks and scares my wife.  She would like me to persue alternative treatments like acupuncture or biofeedback tests to try to cure my epilepsy before even considering an invasive procedure like surgery.  I am open to these other treatments but do not want to stray from my path to surgery -  I have come a long way in the last 8 months and the doctor's have a lot of information about my condition. Once I get though another stay in the hospital for Phase II/III I will find out once and for all if I qualify for surgery  -  this could happen as soon as this summer.  I don't want to stop the path to surgery process now after struggling throught it for the last 8 months, then try acupuncture for 2 years only to find out that it didn't help me.

Does anyone know where I can get more concrete data on the success/complication rates of epilepsy surgery?  - everyone's numbers seem a little different.

From a complication perspective, is Phase II/III with strip electrodes just as "dangerous" as surgery, or are there more risks associated with surgery?  Either way it seems that serious complications like stroke or bleeding occur no mor ethan 1-2% of the time.

What is recovery like after Phase II/III?  Headaches, depression, immobility?  I'd hope that I'm back within 2 weeks of my first day in the hospital.

All input/suggestions are appreciated and I'd love to hear your stories too!

Thanks,
brian

************** UPDATE 8/12/08 **************

Hi

I thought I'd update everyone on this thread about my situation.

My wife and I have decided to put off the Phase II/III testing until January '09, so it will be at least another 5 months before I know if I qualify for surgery. The surgeon, who we actually have an appt with later today, confirmed the possibilty that I could proceed directly on to surgery from the video monitoring if a focal point is determined and it is safe to do so.  This is a good thing as I would prefer not to have to endure the surgery of implanting and subsequently removing the electrodes, go home for an undetermined time period to recover and then return for the actual temporal lobectomy surgery at a later date. My wife is still uncomfortable with brian surgery in general and feels that I haven't tried enough alternative treatments. Additionally she's concerned (and rightfully so to a large extent) that I will be unable to assist with taking care of the kids.  From what I've read on other posts I will be exhausted and have severe headaches for at least one week post-op (likely much longer) and that it may take many more weeks or months (or years or never!) to physically feel as healthy and pain-free as I do now. She has every right to feel like much more is going to be on her shoulders and I can't tell her when/if life will return to how it is now, get better or maybe worse.

I feel like I have tried many things.  I've certainly tried multiple medications with different doses and combinations.  I've experimented with exercise routines, sleep levels, am undergoing acupuncture/massage/relaxation therapy, am trying out a modified Atkins lo-carb diet (which seemed to have been working up until two days ago) and am taking different vitamins for the condition.  Stress may be a trigger to some extent but being a father of two babies and the sole income-provider for my family as well as trying to function and excel in life while living with this condition pretty much guarantees a consistent stress level.   I also feel like  the after-effects of this surgery will be just as difficult for my wife or more-so the longer we put off surgery.  My epilepsy directly causes countless difficulties that I probably need not explain to anyone reading this, and the sooner that I can be seizure free or at least have fewer seizures, possibly lower my medication level and feel semi-normal again, the better. She has never felt safe with me being alone with our kids (ages 3 and 7-months) and when I had my license she never allowed me to drive them in the car just in case I had an episode.  I can't even take my 3-year-old swimming or walk her across a semi-busy street without her feeling extrememly uncomfortable. She has to take care of them full-time and run all of the errands for the family.  If I need to go somewhere the entire family has to pile into the car - thank God I have great co-workers (and a flexible job) who get me to/from work daily.  But even with that I can't stop at a store or simply drive home immediately if she needs me during the day or - I am always on someone else's schedule.  Our condo is too small for the four of us and there is no nearby public transportation.  We'd move to a bigger place that is closer to public transportation in a heartbeat but we like the neighborhood and are physically close to the people whom I depend upon for rides and my wife's parents who help us tremendously with the kids.  If I didn't have E and could drive so much would be different.

As I mentioned earlier we have an appt with the surgeon today.  I suspect that I will meet with him a few more times before I actually go in for the monitoring in January, but I'd like some advice as to what questions I should ask him in tomorrow's appointment. I intend on discussing details about the Wada test which will happen some time shortly before I go in for the monitoring.  I also want to know how I should go about getting a second opinion.  There are 3 or 4 other excellent epilepsy centers within a 2-hour drive from our house and my wife feels I should consult with them before continuing to Phase II/III.  I'll ask him to about his experience performing the surgery, his success rate and about potential complications (I can already see my wife tensing up). But what else should I ask him?  

I also have an appt with my primary neurologist tomorrow. We will talk about my recent episodes and the therapies that I have tried since our last appt (acupuncture, modified-Atkins diet, vitamins).  Anything else in particular that I should bring up with her?  

All recommendations/responses are welcomed ASAP as I have my appt with the surgeon only four and a half hours from now.
 
Thanks and take care.

brian