Almost time

CQ:)

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Hi all,

It's not long now until my surgery. I am going to my parents place on 3 March then my Mum & I go to Melbourne on 6 March. I have appts & tests on 7 March & 8 March & the surgery is 10 March.

I am still excited about the surgery but deep down I'm probably a tad nervous. I prefer not to go in expecting surgery to completely stop my seizures because if I did & I do keep taking seizures after surgery then it would be a huge disapointment. I take alot of auras (lately they are often weekly) which do get annoying at times so at the moment my goal is to reduce the auras. If the surgery does stop the seizures then that's a major bonus :).

I have already been told I have to take it easy after the surgery so will be staying with my parents for at less a month. When I go back to my own place my parents will come in every couple of days to help me with cleaning & cooking.

This week will be my last week of voluntary work for a little while & I will miss it :(. I am taking at less 3 months of from doing exercises at the nursing home & at less 6 months of from working at the charity shop. After i go back to my own place I am going to get my Dad to take me to the nursing home to visit a couple of residents.

I will try to drop in for a sticky beak before I go away but if I don't get in I will chat to everyone after surgery :).
 
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Meetz1064

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Hey there

CQ!

I'm glad to hear you're so upbeat about the surgery. It's a good thing when you have a positive outlook about something, as things go sooo much smoother then.

Take your time recuperating, and don't worry, we'll all be here thinking tons of positive thoughts about you, saying prayers and sending well wishes.

((((((((((((((HUGS))))))))))))))

Take care!

Meetz
:rock:
 

BuckeyeFan

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I am putting these dates in my calendar and you will be in my prayers. We will be here for you whenever you are able to make it back.

Ashley, who was a member here for a long time and had surgery. I keep up with her on facebook and she is doing terrific. You will too.
 

Endless

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CQ,

I am thinking of you and sending warm, positive thoughts your way. I'm hoping the surgery is going to make your life so much better!

<<<<<<<BIG HUGS>>>>>>>
 

Nakamova

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CQ, I hope the surgery is a piece of cake, and the recuperation is Foster's on draft. Or something like that. We'll all be rooting for you, every step. When you get a chance, let us know how you're feeling.
 

carolyn

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Good luck with the surgery, CQ! I will keep my fingers crossed for you :). Stay positive!
 

Cint

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Hi CQ,

I wish you all the best with your surgery. You have a great attitude and that is what matters. With you going in and not expecting the surgery to completely stop the seizures, you will do well. :tup:
 

ajax

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I'm excited for you CQ! I sure hope you'll keep us posted throughout, as you feel well enough to. I'm interested in all the crazy details. I'm sure there is so much that we could not begin to expect.

Know you have all sortsa positive vibes and prayers and hopes from Idaho. We're pulling for you! What an awesome and courageous step for you to take. I'm stoked for you.

All the best.
 

CQ:)

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Thankyou for all your wishes.

While I am staying at my parents place I am hoping to come online every now & again to check my emails & keep people updated on how I'm going.

It's funny how some people don't realise how serious brain surgery is. A couple of people I volunteer with know I have epilepsy & will be having surgery but I think some assume that just after the surgery I will be right to volunteer again.

Today I was at the charity shop I volunteer at & one of the other female volunteers asked me how long I'll be away for. When I told her at less 6 months she was surprised as she assumed I'd only need a couple of months of. I had to explain that it is better to take your time recovering instead of doing things too soon.

I also had another female volunteer assume that after the surgery I won't get so tired because I will no longer be on meds. I told her that I will still be on meds after the surgery & that the specialists will gradually reduce my meds as i recover. When I 1st met my epitiologist & spoke to him about surgery he explained to me that there is a chance I could be on meds for the rest of my life but the meds will be gradually reduced. I have never had a problem taking the meds but if I will be able to get down to just 1 med then that will be good too :D.
 
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Cint

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It's funny how some people don't realise how serious brain surgery is. A couple of people I volunteer with know I have epilepsy & will be having surgery but I think some assume that just after the surgery I will be right to volunteer again.

Today I was at the charity shop I volunteer at & one of the other female volunteers asked me how long I'll be away for. When I told her at less 6 months she was surprised as she assumed I'd only need a couple of months of. I had to explain that it is better to take your time recovering instead of doing things too soon.

I also had another female volunteer assume that after the surgery I won't get so tired because I will no longer be on meds. I told her that I will still be on meds after the surgery & that the specialists will gradually reduce my meds as i recover. When I 1st met my epitiologist & spoke to him about surgery he explained to me that there is a chance I could be on meds for the rest of my life but the meds will be gradually reduced. I have never had a problem taking the meds but if I will be able to get down to just 1 med then that will be good too :D.
I do know what you mean. People don't realize how serious brain surgery is or the complications that could accompany it. When I had mine years ago, people just assumed I would recover quick and be back to work in no time with no seizures. None of that ever happened for me. I'm on more meds now and then had the VNS surgery also to help control seizures.
So I do hope it works much better for you.
 

CQ:)

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I do know what you mean. People don't realize how serious brain surgery is or the complications that could accompany it. When I had mine years ago, people just assumed I would recover quick and be back to work in no time with no seizures. None of that ever happened for me. I'm on more meds now and then had the VNS surgery also to help control seizures.
So I do hope it works much better for you.
Hi Cint,

I hope that one day you will be able to find something to help control your seizures.

When I came back from my Video EEG I had people assume that I had been in hospital for my surgery. I had one female volunteer at the chairty shop ask me how I was & if I noticed any changes. When I asked her what she was talking about she asked how the surgery went. Turned out she had asked the boss where I was & he said in hospital for testing & she just assumed the surgery. I had to explain to her that I was only in hospital for testing to find out if I could have the surgery.

When I got back from the Video EEG I had another volunteer who knew I was in hospital for testing tell me that when I havethe surgery I would come back with no hair & a bump on my head :roflmao:. I told her that the surgeons only shave a section of my hair where they will operate. I'm not quite sure why she thought I would have a bump on my head, maybe she think I will be hit over the head with a pan instead of having anasthetic :pfft:.

I used to volunteer in an office at a place that took people for disabilities on holidays & did activities with them. I worked there for a couple of years but found that at one stage I was volunteering at 3 different places which caused me to have more seizures. I ended up leaving the disability place as that was it I was most busiest & cut back on my other voluntary work.

It's 18 months since I left the disability place but I still keep on contact with the volunteer coorodinator to see how things are going. Everytime I speak to her she tells me they'd love to have me back & when i say I probably wont be back she tells me even if it's a day here or day there. I know that if I go back there I'd end up overdoing it again. I went & saw the volunteer coordinator last week to see how things were & let her know I'll be having the surgery next week. She told me she hopes I make a really fast recovery & will be able to go back there within 3 months lol.
 
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CQ:)

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My Mum & I are leaving for Melbourne Today so just come in to say goodbye one last time.

Hope everyone keeps well & will chat after I get back.
 

Meetz1064

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Good luck, CQ!!

We'll be thinking positive thoughts, and sending prayers your way!!!
 

CQ:)

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Hi all,

Well it's almost 2 weeks since my surgery & all is going well. I was in hospital from 10 March - 14 March in hospital where I spent most of the time vomiting & of my food. The nursing staff were fantastic & kept telling me I was a great patient lol.

I now have a scar from the top of my head to just near my ear but it is near my hair line so easy to put hair over the scar to hide it if I want to. All up I had 22 staples in my head.

Apart from the headaches which are starting to ease I am very sensitive to noise. I have lots of noise echo in my head which should settle down eventually.

I had appts on Monday March to see one of the surgeons, the epilepsy neuropsych & the neurologist. They were all happy with how things are going & how the scarring is healing. The surgeon told us that they looked at my scarring & got all the scarring aswell as the dead tissue. They are now more positive that I have more chance of no more seizures. As I told the surgeon that's great news but I'll still take each day as it comes.

After I got out of hospital my Mum & I stayed at a place which is run by Lions Club. It is especially for people who have appts at the hospital who have had premiture babies & live to far away from hospital to travel.
I was able to go back home Yesterday so my Dad came to pick us up & we got to my parents place last night.

I have to go to Melbourne in June for a checkup & some more tests then every 3 months to see the epitiologist & epilepsy neuropsych.
 

Nakamova

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Thanks for checking in CQ, I was wondering how things were going post-surgery. 22 staples? Wow. I hope you keep feeling better and better.
 

Endless

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CQ,

I am so happy things went well. Thank you for letting us know how you are doing. :)
 

CQ:)

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Pics of my scarring. It is healing well & the headaches are starting to ease a bit. Where the scarring is makes it very easy for me to be able to comb hair over it so nobody notices.



 
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