Welp, here we go!

[Pingu]

My Eptologist contacted me the other day to inform me that my planned video EEG and the other testing he wanted to run on me will go ahead with an admission date of Jan 29th. He has told me that I will be withdrawn from my medication for the week and my seizures will be provoked through various methods so they can work out what part of the brain my seizures originate from so I can possibly be a surgery candidate.

I'm both scared stiff about this testing but excited at the same time. Work has been extremely supportive of me and my seizures, allowing me to have the time off so I can get this done. They have also reserved time off for me should I become a surgery candidate and have the operation.

I feel sorry for my grandma who is spending the 7 days at hospital with me to watch me - I'm going to do something special for her as a thank you, just what to do is the only question.

 

[Porkette]

Hi Pingu,

I wish you the best of luck with the video EEG. I had to have the same testing done before I had surgery back in 1994. Just like you they cut me back on my seizure meds and I was in the hospital for about 4 -7 days. I was able to get up and walk around my room and the test wasn't painful at all. The Dr. had a 25 ft. cable hooked up the e.e.g. machine so I was able to get around my hospital room with no problem.
One thing you may want to do that I did is if you know of any foods or beverages that will trigger seizures bring some with you because the sooner you have the seizures the sooner you will be out of the hospital. I drank a lot of diet soda that always triggered seizures for me along with bright flashing lights.
I wish you and your Grandma only the best and May God Bless the Both of You!

Sue

 

[CQ:)]

Good luck Pingu

I’ve had 2 VEEG, my 1st was in late 2010 as part of pre surgery testing. MRIs had already shown scarring on my left temperol lobe but they still had to do the veeg. When they did the veeg, they only reduced my meds as they tried to trigger a partial which was my main seizure but all I managed was some simple partials and odd things from withdrawal symptoms from reducing meds. My mum was with me for that Veeg.

Even though I didn’t have the seizures I usually had the specialists still had enough info they needed to say I could have surgery which i had in March 2011.

I was 2 years seizure free then started having ‘funny feelings’ again in 2013. I had my 2nd veeg in 2015 as my neuro wanted to capture these funny feelings on video to give him a better idea of what type of seizures I was having. For my 2nd veeg I was taken off all meds and I sleep deprived, I was only meant to be in for 5 days but my brain was stubborn and by the 5th day still nothing so the neuro kept me in for a week longer. I finally had a tonic clonic on the 6th day which the nurses heard so they came straight in to assist then after that I started having the funny feelings. After that I had a few funny feelings and the neuros got some good footage, enough for them to confirm my funny feelings were focal seizures.

I went on my own for my 2nd veeg as it was just monitoring and I knew when a funny feeling was coming on so had enough warning to alert nurses.

 

[CQ:)]

I just realised you’re in Australia, where are you going to for your Veeg.


I’m also in Australia and I went through Austin health in Melbourne.

 

[Pingu]

I just realised you’re in Australia, where are you going to for your Veeg.


I’m also in Australia and I went through Austin health in Melbourne.

I'm doing mine at Westmead Hospital in Sydney under the care of Dr Andrew Bleasel

 

[CQ:)]

I'm doing mine at Westmead Hospital in Sydney under the care of Dr Andrew Bleasel

I'm on the NSW / Vic border with only 2 generalised neuros in my town. When my local neuro couldnt do any more for me after he tried a variety of meds he referred me to Austin Health as it's only 3 -4 hours away.
The head surgeon who do my surgury was Prof Gavin Fabinyi.

 

[Fedup]

Pingu

I understand what you mean, the nerves because you are thinking of the induced seizures and the not knowing what will happen or what the outcome will be. Well try not to worry (its easy for me to say, I know) but trust me there is little point in you worrying. I have gone through so many of these over the years the last time I offered to put the electrodes on. 1) because you already know what its like having a seizure so a few more will not put you about a whole lot, it probably will everybody else, but your having them and you know you can deal with whatever is thrown at you. 2) there is always that chance things might just work in your favour and you get to control them, which makes it worth while.

Remember take every chance but do not get your hopes up, you never know just how lucky you might be. Think of how happy that will make you, you will be out celebrating for a week. The testing will be a bit of a rest for you, well you know yourself when you try to force some thing to happen it does not always happen.

That is a nice idea doing something for your grandma whish I had thought of something like that.

 

[valeriedl]

My grandma and I were very close and I know she'd probably even offer to do it without even being asked. The way the two of us were with each other there was a good chance that we could have gotten kicked out of the hospital because of the things we'd be doing. I can picture me walking out wearing a hospital gown and socks with all the wires still attached to me.

Is there a hobby that she has or something that she really enjoys doing? You could spend a day, or more, with her doing these things. I know this sounds stupid but could clean the house with her? She probably wouldn't let you do it yourself so she'd want to help (and let her because grandparents love doing things with their grandchildren) because many times there are places that she can't reach or move things that you could. Is there something that she knows how to do that you'd like to learn? How to cook something she makes, sew or something else? There's nothing more than grandparents love is to teach their grandchildren, no matter how old they are, is how to learn to do things.

In general I know my grandma would have loved to just spend time with me, even though we'd already spent a week together.