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Why Does My Family Appear To Think That I Should Be Scared For Surgery Testing????

Ever since I received the call from the secretary from the AMU, my family has been acting incredibly weird and off their rocker. I told my sister that I have to go into the hospital soon for Epilepsy surgery testing and her reaction was out of sight crazy. She responded, "What the hell. Are you serious?" and a bunch of other stuff. She threw a fit. My parents are asking me questions about how I feel about this entire situation. My father seems to be more scared than my mother. The sound of his voice drastically changed when I told him about everything that is going to happen soon. It has been like a roller coaster. I believe that they do want me to get better but they are making me feel like they are not as supportive of my decision to continue with the surgery. I want them to realize that this might change my life entirely. I'm okay with the doctors doing the tests and I'm okay with the surgery. I am not trying to worry myself out about this like they are because I know what that is going to lead to.... seizures. It ain't finna rock that way!!!! So I am going to stay calm. Everybody else should feed off of my energy and hope for the best. I have faith that this surgery will work for me.

What do you all think about it?


Hi There,

The thoughts of brain surgery is a lot to take in.  It seems like you have researched it lots and are okay with the testing processes and whatever the end results may be - candidate and surgery happening hopefully, if not then a solution to manage things better. When I went through the process of getting a referral to the neurologist I now see as well as the neurosurgeon I had my mom &/or my dad with me. During the process I did have a lot of friends who reacted in a similar way to your sister.  The more I explained the processes to them the more they understood it and slowly they were ok with the idea that I was letting doctors drill into my head so I'd stand a chance to be seizure free.  During my subdural EEG I called a great friend of mine from the hospital.  As we were talking they basically said probably like the experience of me having seizures and them witnessing that it was just tough to understand.  In the past I'd had a few seizures while we were hanging out & I'd have no clue they happened at all until a wicked headache kicked in.  Usually I was pretty out of it and just wanting to sleep while they were totally freaked out wondering if I was going to be okay.  They told me my pre-op and surgery was almost the same concept. I was the one going through it all with doctors by my side, friends and family were the ones talking to doctors and each other hoping for the best.  I realized then, it's tough to tell people not to worry or be stressed, and that everyone is going to deal with that in their own way.  Give it time then talk to your family a bit more.  Maybe see they will go to your neuro appointments if they don't already.  I'm sure it helped my parents get what was going on when they were at those appointments with me.

Hope my scattered thoughts help

Good Luck


p.s System made me edit this subject..message kept coming up about characters, etc. hope ya don't mind :)

How bad was the feeling of the surgical EEG and how many tests did you have to do before you could get the surgery? All of my EEGs and MRIs have come back normal since I was diagnosed and the drs already told me I will most likely have to get the surgical EEG. My dr said it feels like your head was run over by a truck. I am seeing another neurologist in 3 weeks to see if he thinks I am a candidate but I'm pretty sure I am. I was offered it 10 yrs ago but was scared of the surgical EEG. After the surgical EEG how soon did you get the surgery? I can't seem to find any answers on the internet about that. My seizures were tolerable for a long time but I got pregnant n my hormones went crazy and I had close to a thousand and I just cant recover so that is why I am going ahead and trying to get the surgery. How was your recovery overall and how are your seizures now? My husband is scared for me to get the surgery but I am more scared to never get back to how I was before I got pregnant.


Your doctor sums it up pretty good that the surgical EEG does feel like your head has been run over by a truck for awhile.  Of course I was asleep during the surgery part and just woke up with a horrible headache wanting to sleep with nurses wanting to wake me up every hour on the hour to make sure I was ok..especially the first couple days.

To explain my history a bit more - basically I was diagnosed epileptic when I was around 5..took meds until I was 12, doctors thought I outgrew things.  Then kinda out of the blue when I was 17 - a high fever/cold lead to my first more severe seizure and me back on meds.  On average one seizure a month after that.  Doctors tried all kinds of meds and combinations of meds - tegretol, valproic acid, lamictal, topomax, keppra and clobazam are the ones I remember....although I'm sure the list is a bit longer. 

Jump ahead to 2008...I was around 35 when my neuro in Toronto said he couldn't think of the next med combination to try, so it was his suggestion to do the video EEG and see the medical team at LHS (London, ON) to consider surgery. He basically said that if surgery wasn't an option, then well they'd have all kinds of data to come up with a treatment plan.  After the referral Wait times took awhile...the first video eeg with wires on my head was in June 2010, the subdural eeg happened later that year in November.  I walked out knowing surgery was going to happen, it just took until July 2011 for the procedure to happen.   I had right temporal surgery where they took 10cms out of my brain.  Basically after my surgery I was only in the hospital for about 3 days after, but when I went home it was a few weeks before I even felt like doing much at all.  I spent a lot of time sleeping - awake for 2 hours then wanting to go back to sleep was typical.  Slowly I just kinda built up the amount of time I could stay awake, then strength to do something.  Went for a lot of walks during the day adding a bit of time every day to build up strength and energy.   With where they drilled in my jaw hurt lots making it tricky to eat & that took time to over..still bugs me once in awhile, but I'm used to that.  As much as it's impacted somethings - mainly memory and vision, I focus on the end result being seizure free coming up on 2 years now, and on less medicine...staying on Keppra for at least a few more years, but 1 med is better than the 4 I was on before surgery.  Going back to work was a bit of a struggle so my family doc referred to me an occupational therapy team who basically is helping me re-learn multitasking and other job skills again.  Day by day things get better.  Although it's taken time, the end results have been worth it to be seizure free and stand a chance at getting a driver's license. 

I'm still seizure free, but lately I'm getting a lot of headaches so I've been reading up a bit on Keppra and Vitamin D.  Doctors added that in a few months back & I keep wondering if that's what is triggering some of my headaches.

Hope this makes sense & helps out.  :)


Keep in mind that epilepsy is a family affair. Family members experience epilepsy and the problems resulting from or associated with it differently than the person having the seizures. All people involved should be part of the teaching, counseling and discussions before surgery as everyone needs to be prepared and part of the process. While the person with the seizures may be the one having the surgery, the whole family will be experiencing the stresses, hopes and challenges. Support to everyone during the process is crucial, and support among family members is necessary.

Talk to your epilepsy team and make sure family in included before surgical testing, before surgery and afterwards.

Good luck to all!

Resource Specialist

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