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Video Monitoring and Surgery. I need Advice!

I'm 14 and had seizures since i was 5. I've been talking to neurosugens about surgery. We've decided not to go through with the surgery and try a few different meds. But they don't know where my seizures are coming from and want me to go through with video monitoring. Being 14 i really do want to be watched constantly with cords on my head for 3 days. I like my privancy. I don't even like my parents in my room when I'm reading. But they say I should go through with the video monitoring. But should I if I'm not going to have the surgery? I really don't want to have video monitoring but I want to know where my seizures are coming from.What should I do?!

Comments

Re: Video Monitoring and Surgery. I need Advice!

I am just a mom. But my son just went thru the three day affair at the hospital with the leads hooked up. I think you should go ahead and get it done. this is your life. You need to take charge and do what is right. My son is 6 years old. he does not really get to choose weather or not he goes. But you know they need the info for your best interest. I think it would not be so bad if you picked some movies to take, some HOMEWORK, some snacks and called it a mini vacation. you do not have to be on video to go to the bathroom or shower, do worry. they are only looking at how your body reacts to the severity of the seizures. when which part of the brain does what to your body.
You will be okay.
Lisa

Re: Video Monitoring and Surgery. I need Advice!

Hi there I know it is hard but for the surgery to even be offered and then be successful they really need to do this VEG as they really need to get a focus point The doctors only look at the time you have seizures so privacy isnt a huge issue it really does help in the diognosis and I dont think they would do surgery without this Just thi itnk it is only 3 days for maybe a whole lot brighter future Good Luck!!!!!

Re: Video Monitoring and Surgery. I need Advice!

I had video monitoring when I was your age. At that time I had no clue why they were doing it. I felt a little intimidated at first but the staff, were real nice. Told me I needed to call them when I needed to use the bathroom or when I thought I was going to have a seizure. They basically left me alone. Once I ignored the camera, it was my vacation away from everybody. I have been what I call telemetry alot, or video monitoring alot. Each time period it is better. I am not a severe seizure patient, they just are in the way of driving and working at this time. Every 2-3 years they monitor me when I go into a status attack an note I have an area that was not abnormal before on the EEG be detected on the telemetry and they were able to give me the right amount of medication. My abnormality was initially was in the front of the speech center and they removed it. Then when I had a status attack they noted it was in the posterior anterior lobe, which they never saw before. Now the last status attack it was in the back or posterior temporal lobe or the back of my speech center.
The telemetry or monitoring unit are helpful in many different facits, I cannot have surgery anymore and this is the way they know what is going on with me. I am married have 2 children, worked in the field of Neurology for 14 years. I wish you luck. It something, I learned to be humble in. Take care and I wish you the best of luck!

Re: Video Monitoring and Surgery. I need Advice!

HI & WELCOME. YOU'VE TAKEN SOME BIG & HEALTHY STEPS ALREADY TO BE ABLE TO POST ON THIS SITE.

IM A MOM WITH E & HAVE 2 BOYZ AGES 14 & 11. MY SZRS STARTED AT AGE 12 BUT I WASN'T DIAGNOSED UNTIL MY MID 20'S. LAST OCTOBER I DID THE VIDEO MONITORING FOR 7 DAYS & LIKE YOU IT FLIPPED ME OUT TO THINK SOMEBODY WOULD BE WATCHING ME SEIZE & EVERY MOVE I MADE. BUT THEN I REALLY THOUGHT ABOUT IT AND TOLD MYSELF THAT MAYBE NOW I COULD "SEE WHAT OTHER PEOPLE HAD BEEN TELLING ME I DO DURING A SEIZURE?"

I NEVER DID WATCH THE VIDEO. MY SON WAS JOKING ABOUT PUTTING IT ON UTUBE. CAN U IMAGINE? I LAUGH ABOUT IT NOW BUT DON'T REGRET HAVING IT DONE BECAUSE IT SHOWED THE PROBLEM AREA.

PLEASE CONSIDER DOING IT BECAUSE THEY ARE ALWAYS COMING OUT WITH NEW MED'S TO HELP & IF THEY KNOW WHERE THE PROBLEM IS YOU HAVE A GREATER CHANCE OF BEING SZR FREE. BESIDES YOU WILL PROBABLY WANT TO DRIVE IN A FEW YRS. & NEED TO HAVE E UNDER CONTROL.

ITS A HARD DECISION BUT ITS YOURS.

BEST WISHES!

SHERRI

Re: Re: Video Monitoring and Surgery. I need Advice!

I had video monitoring done in spring of last year so the doctors could establish where my seizures were coming from. It took longer than expected for them to get enough seizures on VEEG, but the process itself was no big deal. I had a large room and could move around as long as I didn't go over the threshold of the door, and of course the bathrooms have no monitors. Staff was very friendly and did everything they could to make me as comfortable as possible. If you decide to have it done just make sure you take things to keep you entertained -- books, music, rent a TV. The hardest part of the experience was simply keeping myself entertained. By the way, I'm a mom of two teenage boys.

Good luck, regardless of which decision you make.

Lorraine

Re: Video Monitoring and Surgery. I need Advice!

I think that you should go through with it, especially if they don't know where your seizures are coming from. There is a bright side to being in the EMU. If you are a gamer well you get a bunch of time to do nothing but play on your X-Box or PS-2. :) Oh yesh and don't plan on just three days, I've done this FOUR TIMES in the past year and every time I've been there for at least a week. All in all though I really think you should bite the bullet and go for it. Hey maybe the chicks at your school will think its kinda neat and stop and see you :) :) Let me know what you decide to do, and if you have any questions just drop me a line at mavic0_1@yahoo.com. Eric

Re: Video Monitoring and Surgery. I need Advice!

Hi,
I like you didn't want to have to go through the Video telemtry tests. I had epilepsy since I was 11 Months old. I had the Video telemtry done when I was 17 and The neurologists were unsure if I suffered with epilepsy or not.They thought I was having panic attacks. So I had to get it done a second time. I was told that I had Peti Mal epilepsy and I was suffering with Complex Partial Seizures. I would recommend you go forward to have the Video Telemtry test done. Its only a few days and you will finally get an answer as to what you have and hopefully which side of your brain it is effecting and you will never have to go through with it again.
I wish you the best of luck whatever you decide.
Take care
Raid.

Re: Video Monitoring and Surgery. I need Advice!

Hi,
I like you didn't want to have to go through the Video telemtry tests. I had epilepsy since I was 11 Months old. I had the Video telemtry done when I was 17 and The neurologists were unsure if I suffered with epilepsy or not.They thought I was having panic attacks. So I had to get it done a second time. I was told that I had Peti Mal epilepsy and I was suffering with Complex Partial Seizures. I would recommend you go forward to have the Video Telemtry test done. Its only a few days and you will finally get an answer as to what you have and hopefully which side of your brain it is effecting and you will never have to go through with it again.
I wish you the best of luck whatever you decide.
Take care
Raid.

Hi, Sorry didn't relise

Hi,

Sorry didn't relise until now that I had placed the same post twice.
My appologises.

Raid

Re: Video Monitoring and Surgery. I need Advice!

Hello Epileptic teen.
I'm glad that your taking the time to get the opinion of others who have already gone threw with this because they can give you a true opinion of how beneficial it was for them and hopefully will be for you.
I also went threw the VEEG a couple of months ago and it was very beneficial for me. It gave them the information that my Epitologist needed to find my focal point. ( area where my seizures origionate from)
As one of the previous people mentioned in about 2 years or so you will want to drive so weather you choose to try to find a medicine that works or go the surgery route the VEEG will help you a lot.

Its you're choice but just know that as much as youre privacy may be slightly invaded for a few days this could help you for the rest of your life.

Good luck with your decision,and I hope all goes well. Scott

Re: Video Monitoring and Surgery. I need Advice!

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