Update - looking at possible brain surgery

Ruth

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Keep us posted. The tests will show whether you are a candidate or not. If you are a candidate, have questions ready and written down to ask the doctor. I am sure you will need a lot of information.

If you decide on the surgery, the more information you have about it the better you will feel about it.
 

CQ:)

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Keep us posted. The tests will show whether you are a candidate or not. If you are a candidate, have questions ready and written down to ask the doctor. I am sure you will need a lot of information.

If you decide on the surgery, the more information you have about it the better you will feel about it.
Sorry Ruth,
Missed your post this morning lol.

At this stage the epitioligist (pretty sure its spelt wrong) who I saw last week said I am a pretty good candidate for surgery.

I go on another epilepsy forum & have been chatting to a lady who had the surgery 3 months ago. This lady had the surgery at the same hospital where I'm going so she's been giving me heaps of info & details.

I'm sure when teh time comes closer I'll have a million questions going through my head which I can ask the specialists lol.
 

flinnigan

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:clap:I'm so glad you found someone from your hospital. Its really not as scary as it sounds as Elaine from here said Epilepsy surgery is the safest of brain surgery's. Which makes so much sense when you look at the amount of pre-surgical testing that's done and the fact we know were not looking at brain cancer.
 

Ruth

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No need to apologize, I was not on the internet this morning.

I am glad that you found someone who has had the surgery. When did she have it?
Having someone going through the same thing is a big help and a lot of support.
 

CQ:)

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No need to apologize, I was not on the internet this morning.

I am glad that you found someone who has had the surgery. When did she have it?
Having someone going through the same thing is a big help and a lot of support.
The lady who went through the same hospital I'll go through had her op in March. She's having her 3 monthly checkup this week. I think so far she's been going well.

She's been great help with any questions I have & giving me heaps of info.

I spoke to the epilepsy liason lady this morning & asked her heaps of questions & still forgot to ask her a couple of questions lmao.
 
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CQ:)

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Hi all,

I thought I'll give you a quick update with whats happening with the tests.

I spoke to the epilepsy liason lady from the hospital recently & she has booked me in to have the 1st set of tests in September.

I am booked in to have the SPECT scan & PET Scan on 9 September & the MRI on 10 September. All 3 tests are in the morning (SPECT scan is 8:30am). I live at less 3-4 hour drive from the hospital so Mum & I are going to go up by train on 8 September.

Mum & I both agreed that on the day before the 1st tests we will go to hospital to check out where we are having the tests. This way we will know where we are going the following day & less chance of getting lost lol.
 
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Ruth

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Thank you for keeping us posted. I agree, it is a good idea to go ahead of time to find out where the tests are taking place. I am glad that they are going to be thorough in the testing. That is important.

When I go to a new hospital, I go the day ahead of time to find out where the tests are going to be.
 

CQ:)

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Hi all,

Last week I had the 1st lot of tests done & all the tests went well.

I had the SPECT scan & PET scan last Thursday morning & the MRI last Friday morning.

After I had the PET & SPECT scans I met the hospitals epilepsy lianson lady I was shown where the video EEG monitoring is done. I was also able to meet a lady who was in the hospital for the video EEG monitoring & she was more then happy to chat to my Mum & I & answer any questions I had about the EEG monitoring.

We stayed at a hotel which is for patients & their carers to stay at & just a short walk from the hospital. On the Thursday morning before I went of to my 1st scan I met a guest at the hotel whos daughter had epilepsy & had only just had the surgery the day before.
 

Endless

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I am so glad they are doing thorough testing. When do you get the results? How long is your video EEG?

What was the PET scan like? My doc wants me to have one of those. I'm just so absolutely through with tests and don't want to.
 

CQ:)

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I am so glad they are doing thorough testing. When do you get the results? How long is your video EEG?

What was the PET scan like? My doc wants me to have one of those. I'm just so absolutely through with tests and don't want to.
Hi endless,

I was fine with the PET, SPECT & MRI scans fell asleep during the SPECT & MRI which did make time go a bit faster lol.

I had the PET scan straight after the SPECT scan. I had a small amount of dye in my arm then I had to sit & rest for about 10 mins before the scan. The scan only took about 20 mins & the machine looked a like a cat scan machine.

I go into hospital for the video EEG on 8 November & I am expected to be in hospital for 2 weeks. After I finish the EEG monitoring & am put back on meds I'll either stay at the hospital or their hotel for a couple of days before I can go home.

I still have to have a neuropshych test which will be done when I'm in Melbourne in November.
 

Endless

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I'm glad you are all done with those. It's a bit like running a marathon.

When do you get the results?
 

CQ:)

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I'm glad you are all done with those. It's a bit like running a marathon.

When do you get the results?
I forgot to ask anything about if I get the results lmao.

I am just assuming that the results will go straight to my epitoligist & I will told the result in November.
 

CQ:)

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Not long now

Hi all,

Well it's almost a week until I go to hospital for my Video EEG monitoring which will be a 2 week stay. I'm sure I said before that I think I sometimes take night seizures (which are bit like sleep walking) so I am really interested to see what the EEG shows.

I am booked to go into hospital at 8am next Monday (8 Nov) but Mum & I are catching the train next Sunday afternoon & staying at the hospitals Medi Hotel for the night.

As I will have been put back on my meds not long before Mum & I go back home, my parents prefer it that I stay with them for at less a week until my body gets used to the meds again.

I still have to pack but have got as far as shoving most of my clothes on the spare bed so I class that as a start :roflmao:. I can see this coming week is going to go very fast so if I am motivated I may pack Tomorrow lmao.

I will say from the time I met my epitiologist in June & he arranged for me to have these different tests the time has flown very quick.

In case I don't post anything before now & next week I'll catch you all in about a month :D.
 

CQ:)

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Thank Ruth & Seizing Beauty,

I will try to get online when I'm at my parents place to let everyone know how things went.
 

Bernard

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Wishing you all the best CQ!
 
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