the hole is big, but life is good!

qtowngirl

CWE Supporter/E Hater
Supporter
Messages
2,557
Reaction score
0
Points
0
hi friends ;)

http://www.coping-with-epilepsy.com/forums/f41/its-been-6-months-im-leaving-10-hours-22824/ (just the background so i don't blab on too much here!).

safe to say february 12th was one of the most unforgettable days that will ever happen in my life. my hopes/ideas were getting the mri over with first thing (very hopeful and positive it would come out clear), then spending much time meeting with the whole e-team, had hugs and tears and thank-you cards all ready to go.

:( the mri was the worst i've ever experienced (believe it was my 10th). they've never bothered me, don't mind having my head in there and listening to all the racquet. at first i was okay then my brain went something along the lines of 'what? what the hell are we doing in this contraption again? get us out of here!'
was anxious, hands were numb, and as familiarity has always been a massive seizure trigger for me, old memories set in fast when i started recognizing certain rhythms and knocking. then a sequence would happen i'd never heard, and instantly relaxed. then a familiar one again, on and on. with about 15 minutes left i started feeling a very pre-seizure feeling, like a simple may just hit any second. but thanks to my new brain and me refusing to give in to an old feeling, it all came out fine. no seizure, just a level of anxiety i've never felt in there before. grrrr.
the after-effects emotionally made me go back to the hotel rather than meet up right away, needed a long shower and a good cry.
after that the day turned into the most fabulous. many (good) tears, and so much support. looked at the mri and it's clean as a whistle, lesion is ALL GONE! without another seizure i will never have another mri, and i was given the ok to drive again. WAS SO AWESOME!!!
seeing and hugging the surgeon who saved my life was overwhelming to say the least, and i'm so excited to go and do it again on my 1-year follow-up august 6th! 1-year-seizure-free is august 4th so it's pretty clear what a great trip to van this will be!

he sent a pre- and post-op pic a few days ago so i've attached... right side of the pic is the left side of my head). hole is about the size of a toonie, surprised me. but personally i wouldn't care if it was three times that if it still meant i was seizure-free.





hugs to you friends, and thanks for being there.
:woot:
 
Last edited:

CQ:)

Veteran
Messages
4,079
Reaction score
138
Points
178
Hi Qtown,
I was wondering how your 6 month checkup went. Sorry to hear about the experience with the MRI but I'm glad that your follow up appt went well & the lession is all gone :woot:.

Also congrats on being able to drive again :banana:.

I am due to go back to the epilepsy clinic on 31st March to see my neurologist there. I'll be glad when that date comes as I have some stuff that I want to discuss with the neurologist. I'll explain more in a couple of weeks when it's my 3 year anniversary :pfft:
 
Last edited:

Penny

Account Closed
Inactive
Messages
434
Reaction score
0
Points
0
I am sooooooooo happy for you qtown. You have come so far! Congrats hon on a great life (and being able to drive). :cheers:
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,725
Reaction score
187
Points
173
Watch out, qtowngirl is gonna be on the road! I'm picturing you behind the wheel of a nice convertible sportscar, zipping down the coast of somewhere warm and sunny...

Congrats on the clean bill of health! I hope you never ever ever ever ever ever ever have to have an MRI again, but if you do, maybe you could ask for half a valium or something just to make it less stressful. I've always hated the noise of the MRI (CLANG CLANG CLANG CLANG, BINGBANGBINGBANG, etc.), whereas my sister (who's a regular bag of anxieties) has no problem with it.
 

arnie

New
Messages
1,146
Reaction score
0
Points
0
Great to hear it! I've been thinking about you. Keep active here or we will miss you. You are a wonderful part of CWE.

Onward and upward, especially for you now that you are lesion and seizure free!
 

Belinda5000

Account Closed
Inactive
Messages
2,241
Reaction score
0
Points
0
Hi Qtown,
that's great for you being seizure free, I'm happy for you.
I'm happy for anyone that's sz free even if it's not me.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,725
Reaction score
187
Points
173
Well, lesion-free anyway. Let's hope the seizures stay away.
Right now qtowngirl's over 6 months seizure-free, so that's an outlook worth emphasizing and celebrating. :woot:
 
Messages
339
Reaction score
0
Points
0
So happy for you, qtown! :hugs:
Hopefully you'll never have another MRI, but I knew it would be a wonderful trip for you.

:clap: :rock: Congrats on getting your license back too. Eastbound trip across Canada?? :ponder:
 

Fedup

VIP
Supporter
Messages
3,508
Reaction score
76
Points
213
qtowngirl

Happy, yes and you deserve it I hope you never have the need for another but it does worry me :roflmao:, its just well it seems like a lot missing and you have got your license back to drive. You have got lessons I presume :roflmao: you do know what a pedestrian is :ponder:, I hope.
 

qtowngirl

CWE Supporter/E Hater
Supporter
Messages
2,557
Reaction score
0
Points
0
Keep active here or we will miss you. You are a wonderful part of CWE.
*smile* awww thank you arn, that is so sweet. and tho i'm not here as much as i used to be, i will always be around. i know myself well enough to say that even if i'm lucky enough to experience a seizure-free life, i am no fool. i may not be having seizures but i still have epilepsy, and either way this is home :)

:hugs:
 

qtowngirl

CWE Supporter/E Hater
Supporter
Messages
2,557
Reaction score
0
Points
0
:clap: :rock: Congrats on getting your license back too. Eastbound trip across Canada?? :ponder:
thanks my girl, and who knows, maybe i'll just show up ;)

as my family would tell you i am VERY good at surprises!!
 

qtowngirl

CWE Supporter/E Hater
Supporter
Messages
2,557
Reaction score
0
Points
0
You have got lessons I presume :roflmao: you do know what a pedestrian is :ponder:, I hope.
:woot: yes, well just in case you should wear something really bright for the next little while... :bigsmile:
 
Messages
495
Reaction score
0
Points
0
Congratulations! I know how wonderful it feels to be able to drive after not being able to for years. Crank up your tunes and cruise! :woot:

And I thank you for this post because it makes me feel better. After being seizure free for nearly five years, I started having them again last October. At first I thought it was my generic Keppra and/or stress, but it turns out my brain tumor has grown back some. My doctor thinks I should have another surgery, and I agree, but I've been nervous. It's nice to read about your positive outcome. :)

Continued good luck to you! :)
 

qtowngirl

CWE Supporter/E Hater
Supporter
Messages
2,557
Reaction score
0
Points
0
Congratulations! I know how wonderful it feels to be able to drive after not being able to for years. Crank up your tunes and cruise! :woot:
And I thank you for this post because it makes me feel better. After being seizure free for nearly five years, I started having them again last October. At first I thought it was my generic Keppra and/or stress, but it turns out my brain tumor has grown back some. My doctor thinks I should have another surgery, and I agree, but I've been nervous. It's nice to read about your positive outcome. :) Continued good luck to you! :)
:hugs: thank you so much! you're so kind. big hugs my dear, can't imagine what it was like getting that news. can i ask why it's grown back? and they'll do testing right, to be sure it's benign? oh i'll keep my fingers very crossed for you. as i've learned from mel, deciding on a second surgery is over the top personal strength, kudos to you for going for it.

you're very welcome for the thread, and you bet i'm crankin' the tunes!!!
hey here's an idea! what is your favourite song? i'm making a cd this week with all mel's songs from her 2nd vimeo, so i'll add yours to it for when i hit the road!!
:bigsmile:
 
Messages
495
Reaction score
0
Points
0
Thank you for your kind words and for the hugs :)

It's always been likely that the tumor would grow back, it was just a matter of when. It was biopsied during my first surgery as a grade II oligodendroglioma. It's benign, but has the potential to become malignant in future. Knock on wood, the MRI didn't show "enhancement" which would indicate that it had become more aggresive. But it has grown quite a bit in just a year and is causing weakness on my right side as well as the seizures. Plus, the more tumor there is, the more cells there are that can change and become malignant. I'm very lucky compared to many here as far as number and severity of seizures. I've had 5 simple partial motor/sensory seizures since October. They are uncomfortable and disturbing, but I feel them coming on and am able to sit down, so - again, knock on wood - I'm not really in any danger as long as I stay off of ladders :p. If I only had a few minor seizures to deal with I might not worry with surgery, but...

Anyway, I hope that six months after surgery I can join you on the road. :) I appreciate my mom and am grateful for her driving me around, but I miss my car and cruising around listening to my favorites songs. I love music of all sorts, from all eras - it's hard to pick one favorite song :D But I always enjoy Listening to Earth,Wind, & Fire in my car. They are unabashedly upbeat and always make me feel happy. :)

Thanks again and big hugs to you too! :hugs:

Happy driving!
 
Messages
339
Reaction score
0
Points
0
i'm making a cd this week with all mel's songs from her 2nd vimeo, so i'll add yours to it for when i hit the road!!
:bigsmile:
I love that you found the songs as powerful, and perfect as I did! :agree:

I have everything crossed for you, travel bug :)
 
Last edited:

qtowngirl

CWE Supporter/E Hater
Supporter
Messages
2,557
Reaction score
0
Points
0
I love that you found the songs as powerful, and perfect as I did! :agree:

I have everything crossed for you, travel bug :)
mel: oh twin you know how much stuff reminds me of you ;)

travel bug: me toooooooooo! everything crossed my dear, keep us posted :)
and thank you for all the good vibes, back at ya. malignant can go to hell it's not getting you!!!!!
 
Top