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  #21  
Old 11-27-2012, 01:02 AM
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Originally Posted by cher1985 View Post:
I myself haven't had surgery but they have found a scar on my brain left side and I have had the 5-day EEG, the information i got from the doctors office said that for 1-2 hours a day I could get "unplugged" and walk the hall ways with a nurse..... WRONG i had to stay in the room and the only walking around I got to do was to and from the bathroom and there needed to be someone with me at all times......... even in the bathroom. and lucky me no showering just washing hands and brushing teeth(I stunk so bad)..... pretty much all I did was read, watch t.v and sleep.
Cher - Were you in for a Video EEG?

When I had my Video EEG my Mum stayed with me & we had a room to ourselves.
I didn't have a bed, instead I had a recliner chair which I sat on all day & the only time I was aloud away from the camera was to go to the toilet (I had an ensuite). I did sometimes get of the chair to walk around but I would make sure I was still in camera shot. My Mum had a chair next to me which folded out to a single bed.

I couldn't have a shower either but instead I had a sponge bath every day. When I wanted to have my sponge bath I just had to let the nurses know so they could get some clean water, clean washer, towel. I had my own showergel, soap etc. When I had the sponge bath the nurses would shut the door & put a screen over the monitor & my Mum would open the door again when I was finished to let the nurses know. I didn't like the sponge baths much but it was better then nothing lol.
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Old 11-27-2012, 04:18 PM
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Oh man, if I went in for 5 and had no seizures... I would almost want to request an extended stay, just so that I wouldn't have to do it all over again. =/ I hope when I go in (probably early 2013, gonna request it from my neurologist) I have a whole bunch, just so there's no doubt.
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Diagnosed in 1997 with Temporal Lobe seizures.
Recent VEEG shows they are actually coming from the Frontal Lobe.
Intractable Simple and Complex Partial seizures, and rarely, Atonic seizures.
Treatment: Lamictal (200 am/100 dinner/200 pm), and Vimpat (100 am//100 dinner/200 pm).
My name is Josie.

"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." --Matthew 6:34
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  #23  
Old 11-28-2012, 02:51 PM
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It sounds as if you are in a similar state as I was prior to surgery. It was hard to contrive. I went through 3 neurologists (2 of which I disliked for various reasons). The 3rd was great. By the time I saw him I had been through 3 meds with no help. I was averaging complex partial every 28 days. With the third neurologist I started Lamictal, slowing increased dosage over 18 months or so, I would get a honeymoon as the dose would increase but they eventually came back. He suggested a neurologist team in Jacksonville to evaluate surgery potential. The #1 neurologist is a former Mayo neurologist, who choose to begin his own team with his surgeon specifically for epilepsy. After 2 MRI's I went to the hospital stay for 1 week for the EEG evaluation on camera. They stoped the lamictal, starved me, prevented me from sleeping, flashed lights on and off, etc. My wife and daughter were there to comfort me as much as possible. In the end they had triggered 3 seizures! I didnít even realize it! But my wife said oh yes you did! Review of the results indicated all 3 seizures originated from the same point on the left temporal lobe. THIS IS A VERY POSITIVE SIGN FOR SURGERY SUCCESS. He said this made me a very good candidate for surgery, was far enough away from the major area of language/memory and an 80% chance of success. I jumped on it, letís do it. Years of frustration, no driving, med side effects, mental stress, affecting my job, my family, friends, dog, catÖÖ.lets do it! They indicated there was more testing to do, WADA, neurophysco, etc. and it took months to get everything complete and all of the time and additional testing required medical and physiological success. My surgery was in April. They did not have to shave my head, they cut and just lifted the skin with hair on it! Recovery in the hospital was pain med dependent for headaches, but after a week or so they were gone and I was walking again, although I had very little energy. Six titanium screws just above and behind the left ear. At first there was a very distinct tenderness and I could easily feel scar tissue. Now after 8 months there is no way I can even tell there was a cut there. The only real side effect I have is being happier than ever in my life. I know that there is a possibility that they could come back someday, after all, I am still and always will be an epileptic, but my life has taken a different course, a happier, positive course. I know that not all epileptics are candidates and it may be too risky and I donate to research and support. But I believe many overlook surgery and are too afraid, but I suggest we carry through with evaluation when your trusted neurologist suggests you should and then decide. It could be that itís more likely to be safe and successful than we may think. I WILL BE DRIVING in DECEMBER! GOOD LUCK TO YOU GEMSISTER and all of YOU!
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Old 11-28-2012, 03:02 PM
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The only real side effect I have is being happier than ever in my life.
This is the kind of story I like to hear! Thanks for sharing your story mcm, and welcome to CWE!

Best,
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Old 11-28-2012, 05:52 PM
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MCM--yes, that is how to describe the meds--a honeymoon period of good control, and then it's all over. So much of what you have said sounds so much like my own experiences. Gives me hope that maybe I can be a candidate too. I hope so! I'm so happy for you and the success you've had. And hooray for driving! Woohoo! I'd love to be able to do that someday!
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Diagnosed in 1997 with Temporal Lobe seizures.
Recent VEEG shows they are actually coming from the Frontal Lobe.
Intractable Simple and Complex Partial seizures, and rarely, Atonic seizures.
Treatment: Lamictal (200 am/100 dinner/200 pm), and Vimpat (100 am//100 dinner/200 pm).
My name is Josie.

"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." --Matthew 6:34
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Old 11-28-2012, 08:00 PM
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Originally Posted by mcm View Post:
My surgery was in April. I WILL BE DRIVING in DECEMBER! GOOD LUCK TO YOU GEMSISTER and all of YOU!
MCM -
Welcome to CWE, it's good to see your recovery has gone so well, hope you can continue to have a good recovery & stay seizure free.

You're lucky to be able to drive again just 9 months after your surgery.
I don't drive myself but over here you have to be 12 months seizure free after surgery & get the forms signed of by your neurologist or epitiologist before you can get your license back.
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Old 11-29-2012, 12:35 AM
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Originally Posted by CQ:) View Post:
Cher - Were you in for a Video EEG?
yes CQ it was a video eeg, the nurses looked like they where going to pass out anytime I was out of that stupid hospital bed. my sister had the recliner chair. and she was able to leave not ONLY the room but also the floor(shes a smoker). I still envy her for being able to get FRESH AIR that whole week.

when you do go home after (how ever long it turns out to be), the first night in your bed its AMAZING!!!!! but it did take me a whole night to get used to not having to wake my sister up so I could go to the bath room* half awake and your cat is sleeping on the bed next to you and you think its the holder of all the wires is weird*
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Old 11-29-2012, 02:28 AM
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Originally Posted by cher1985 View Post:
yes CQ it was a video eeg, the nurses looked like they where going to pass out anytime I was out of that stupid hospital bed. my sister had the recliner chair. and she was able to leave not ONLY the room but also the floor(shes a smoker). I still envy her for being able to get FRESH AIR that whole week.
My Mum was with me when I had my Video EEG, she was aloud 2 breaks each day. She could have a break in the morning so she could have a shower & then another break in the afternoon to get some fresh air or to go down to the cafeteria. When my Mum did want to have a shower or a break she just had to let the nurses know so they could monitor me.
The neurology ward at the hospital I was in was on the 6th floor & the cafeteria was on the bottom floor. My Mum didn't always have her afternoon breaks as she has arthritis in her knees so can't walk to far plus she doesn't smoke so was just as happy to stay in the room with me.

Originally Posted by cher1985 View Post:
when you do go home after (how ever long it turns out to be), the first night in your bed its AMAZING!!!!!

I think it was about 3 weeks after my Video EEG before I was back in my own place. I spent 5 nights in the hospital for the Video EEG then we had to stay in the city for another 4 nights as I had to have another MRI before I could go home & the only time my epilepsy nurse could get the appt was 3 days after I came out of hospital.
After my Mum & I got home I stayed with my parents for 2 weeks while I got used to being back on the meds.

It was so great when I was finally back in my own place & in my own bed again.
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Old 11-29-2012, 10:20 AM
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jemsister, be positive, do not be afraid, Iím praying for you! I am to remain on Lamictal (500 mg) for 2 years, minimum. If I go that far without seizures returning than its up to me to decide to come off. Thatís hard to say right now, to much time in front, but I doubt if I would ever give up Lamictal if I remain seizure free, I want all the insurance I can get. I will say though that I am very scared. I want to protect myself and others. I will voluntarily restrict my driving to just getting to work and home, and a little running around town, I will not drive long distance or when someone is with me who can drive instead of me. I accept that if the seizures return and I am injured from loosing control so be it, that was my decision to drive, but I want to protect others as much as is reasonable. I will restrict my driving voluntarily.

CQ: here in Florida you have to wait 2 years BUT, in FL. your neurologist can submit a medical release form at six months. Donít worry your gonna make it!
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  #30  
Old 11-29-2012, 10:44 AM
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Originally Posted by CQ:) View Post:
MCM -
Welcome to CWE, it's good to see your recovery has gone so well, hope you can continue to have a good recovery & stay seizure free.

You're lucky to be able to drive again just 9 months after your surgery.
I don't drive myself but over here you have to be 12 months seizure free after surgery & get the forms signed of by your neurologist or epitiologist before you can get your license back.
After I had my surgery, I was seizure free for 14 months and at the time I lived in TN. I still couldn't drive until I was seizure-free for 12 months.

Good luck in staying seizure free.
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  #31  
Old 11-29-2012, 02:06 PM
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Originally Posted by mcm View Post:

CQ: here in Florida you have to wait 2 years BUT, in FL. your neurologist can submit a medical release form at six months. Don’t worry your gonna make it!
mcm,
I don't have a license, never had an interest in learning to drive & happy walking when I can. If I can't get somewhere by walking (eg weather, to late, distance) then there is good public transport plus I have some great friends who will take me places or pick me up & my parents are fantastic.
I'm not worried about anything, it will be 2 years in March since I had my surgery & I am happy with how things are going at the moment.
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  #32  
Old 11-29-2012, 02:13 PM
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Originally Posted by Cint View Post:
After I had my surgery, I was seizure free for 14 months and at the time I lived in TN. I still couldn't drive until I was seizure-free for 12 months.

Good luck in staying seizure free.
Thanks Cint,
I really hope one day you can get your seizures under control .

Just curious if you are still seizure free by the required amount of time (eg 12 months) & your specialist signs you of for you to get your licence can the Road Traffic Authority (not sure what you call the people in USA who give your licence) still decline you from getting your licence back?
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  #33  
Old 11-29-2012, 03:23 PM
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Does anyone have actual percentage numbers on how successful the surgery would be (in my case they think it would probably be temporal lobe), what percentage of people have a catastrophic failure (coming away worse, or having brain function issues after the fact), coming away with no change in seizure control--those kinds of numbers? The only numbers I can find online are 60-80% success in terms of some improvement, but no numbers on how often the surgery fails, or something goes wrong...
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Diagnosed in 1997 with Temporal Lobe seizures.
Recent VEEG shows they are actually coming from the Frontal Lobe.
Intractable Simple and Complex Partial seizures, and rarely, Atonic seizures.
Treatment: Lamictal (200 am/100 dinner/200 pm), and Vimpat (100 am//100 dinner/200 pm).
My name is Josie.

"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." --Matthew 6:34
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Old 11-29-2012, 04:27 PM
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Originally Posted by CQ:) View Post:
Thanks Cint,
I really hope one day you can get your seizures under control .

Just curious if you are still seizure free by the required amount of time (eg 12 months) & your specialist signs you of for you to get your licence can the Road Traffic Authority (not sure what you call the people in USA who give your licence) still decline you from getting your licence back?
Right now, I've been seizure free for 8 months and since I'm now in Colorado instead of Tennessee, according to Colorado's DMV (Dept. of Motor Vehicle) it's up to the individual dr. Usually, tho they six months. Right now, my epileptologist says I can drive. Keeping my fingers crossed.
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Old 11-29-2012, 04:51 PM
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Does anyone have actual percentage numbers on how successful the surgery would be (in my case they think it would probably be temporal lobe), what percentage of people have a catastrophic failure (coming away worse, or having brain function issues after the fact), coming away with no change in seizure control--those kinds of numbers? The only numbers I can find online are 60-80% success in terms of some improvement, but no numbers on how often the surgery fails, or something goes wrong...
There are a lot of variables, including the general health history of the patient, the kinds of seizures, how long they've had them, etc. so you can't necessarily draw general conclusions from individual data. It's a good idea to ask your surgical team for as much of this kind of info as possible. There are some studies/meta-studies out there that look at various short- and long-term surgical outcomes:
http://www.ncbi.nlm.nih.gov/pubmed/17548548
http://www.ncbi.nlm.nih.gov/pubmed/17124190
http://www.ncbi.nlm.nih.gov/pubmed/12654959
http://www.ncbi.nlm.nih.gov/pubmed/18485316
http://www.ncbi.nlm.nih.gov/pubmed/15758038
http://www.ncbi.nlm.nih.gov/pubmed/20227852
http://www.ncbi.nlm.nih.gov/pubmed/17237145
http://www.ncbi.nlm.nih.gov/pubmed/14694029
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  #36  
Old 11-29-2012, 04:54 PM
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Thanks, Nak! I will definitely be asking when I see them. In the meantime, checking your links.
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Diagnosed in 1997 with Temporal Lobe seizures.
Recent VEEG shows they are actually coming from the Frontal Lobe.
Intractable Simple and Complex Partial seizures, and rarely, Atonic seizures.
Treatment: Lamictal (200 am/100 dinner/200 pm), and Vimpat (100 am//100 dinner/200 pm).
My name is Josie.

"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." --Matthew 6:34
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  #37  
Old 11-30-2012, 12:33 AM
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Originally Posted by Cint View Post:
Right now, I've been seizure free for 8 months and since I'm now in Colorado instead of Tennessee, according to Colorado's DMV (Dept. of Motor Vehicle) it's up to the individual dr. Usually, tho they six months. Right now, my epileptologist says I can drive. Keeping my fingers crossed.
Cint - Thats great news about being 8 months seizure free .
I have my fingers crossed for you that you can get to 12 months seizure free & you will have your license back again soon.
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Old 11-30-2012, 01:27 AM
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Originally Posted by jemsister View Post:
Does anyone have actual percentage numbers on how successful the surgery would be.
Originally Posted by Nakamova View Post:
There are a lot of variables, including the general health history of the patient, the kinds of seizures, how long they've had them, etc. It's a good idea to ask your surgical team for as much of this kind of info as possible.
with Nak
It is very hard to say what percentage the surgery is going to be a success because we are all different. As Nak has already suggested this would be a good question to ask the epitiologist when you see them.

I believe that the chances of being a good candidate for surgery & the chances it will be successful all depend on where in your brain the seizures are coming from & how confident the surgeons are that they can remove the damage (eg scarring, tumor) safely without causing any damage.

When the team of specialists had their meeting to decide if I was a candidate I was still in hospital for my Video EEG. It was the last day of my Video EEG & after the meeting the epitiologist came in to speak to Mum & I about their decision. When he told me the whole team (epitiologists, neuropsychs, neurologists, technicians, head neurosurgeon) agreed I was an excellent candidate he said they felt that it would be about an 80% chance that the surgery would help control my seizures.

When it was time for me to meet with the Neurosurgeon I met 1 of the neurosurgeons assisting. I met him 3 days before my surgery so he could answer any questions we may have had. When I met the assistant surgeon he told me he thought I had a 60% chance that the surgery would control the seizures. I didn't listen to that % though because the epitiologist had already told me that the head neurosurgeon also believed it was an 80% chance the surgery would help control the seizures. I didn't like the assistant neurosurgeon anyway, I thought he was an arrogant jerk & he was the only specialist who was part of my surgery that I didn't like lol.
I met the head neurosurgeon the day after I had my surgery & he was lovely, when he came to see me the day after the surgery he said he came to see me after my surgery (later in the day) but I was to out of it to realise lmao.

When I saw the neurosurgeon 2 weeks after my surgery he told me that they checked the scarring & felt that they had gotten all the scarring & dead tissue so were more confident that I would have no more seizures.
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  #39  
Old 11-30-2012, 09:15 AM
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NAKA, great references, Although not a Dr. I'm a scientist and read every one of those and quite a few others., what we have to remember, is that every study has multiple variables not considerd, surgical type selection, the age brackest, etc, you can go on and on. Many times selected variables are countered through additional studies. Many are dated (even those published in last decade), the research changes quickly. Don't read one and be upset, if you dig far enough in publications you can likely counter it or it may be questioned by experienced neuros. Find a neurologist you trust, and search opinions on a personal level. On a non-scientific basis, surgery is most importantly a personnal decision, emotionally and physically, everyone is different and surgery success is ultimatly defined by oneself.
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Old 11-30-2012, 11:42 AM
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CQ, must be a unique experience waiting while a whole team of surgeons decides your fate. =P I'm glad only one team member was repulsive to you, LOL! It sounds like for you they decided rather quickly--the data must have just flowed out of you while you were there, haha!
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Diagnosed in 1997 with Temporal Lobe seizures.
Recent VEEG shows they are actually coming from the Frontal Lobe.
Intractable Simple and Complex Partial seizures, and rarely, Atonic seizures.
Treatment: Lamictal (200 am/100 dinner/200 pm), and Vimpat (100 am//100 dinner/200 pm).
My name is Josie.

"Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." --Matthew 6:34
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