life's changing in 7 weeks...

[qtowngirl]

you're march? well then hey buddy hop in! i'll come and getcha and we can go for a spin, 'hey between us we have (mostly) a whole brain so the sky's the limit!' that would be fun!

so no screws or plates ey? onder: how'd ya get so lucky? what did they use for support and to hold everything in place?

 

[CQ:)]

Hi PITA,
great to see you again

But there are still day that my incisions hurt, itch to the point people thing I have dandruff

I still have the odd day where my incision itches & I have to scratch it.

Not long after my surgery when my hair was growing back my head used to get really itchy. I went back to my voluntary work 3 months post surgery & my old boss (also a good friend) joked that he thought I had nits because I was scratching. I told him it wasn't nits, just my head itchy from where they cut it open & some of my hair was growing back. After that when I scratched my head my old boss & I joked that I had unique nits as they were only on 1 side of my head (I didn't have nits & he knew that but it was fun to joke).

 

[qtowngirl]

wow am i ever lucky. i don't have much for itchiness, it happens but not enough to mention it. my biggest issue has been the 'frozen' feeling. every couple days it feels like an ice cube is dripping down the left, right near the middle of the scar. it only lasts seconds but is quite often. no big tho it's just nerves coming back, which most have.
my cheek tingles alot too but none of it's painful, so whateva' right

 

[Cint]

i have developed a dent, aka right side of my face is still perfectly round but the left is a skull bone (pretty much still in the normal place) sticking out and from that to my temple is concaved a bit

I'm just now reading this 'cause i couldn't deal with all of it around the holidays and especially after having my seizures return and another car crash. Anyway, after my lobectomy years ago, my left side is still a bit concaved, but at least my hair covers it now.

also, the surg has started to affect my collagen and elasticity. noticed in the past week or so that my left side is starting to droop (girls you get it - pout! dammit!). it's gotten worse even since i noticed so i've already accepted that at this rate i will, prob next year sometime, need a facelift or something similar for my left side. yay, yeah i got that kind of money just in my back pocket

I had a lot of problems after my surgery, not only with my collagen and elasticity, but my whole female hormonal system went crazy. Tried all kinds of hormonal therapy and finally had to have surgery for that problem, too.

however........ i'm not letting it get me down as i'm still seizure free. it's AMAZING what you don't let affect you the same or is 'lower' on the list after going through this.

And let's hope you do stay seizure free. I was once seizure free....... for 14 months after my surgery. What a blow it was to my personal self when they returned and haven't gone completely away since.
And now I don't let the simple little things in life get to me anymore like I once did. I am grateful I'm not dead yet with as many crazy falls and accidents I've had from those stupid seizures.

 

[Nakamova]

Congrats on the 5-month mark qtg! Every little milestone is worth celebrating. Just be careful when you finally get behind the wheel. No texting while driving.

 

[qtowngirl]

no worries there nak - i didn't use my cel while driving before surg (very law-following girl ) so i certainly won't after surg.
fairly nervous actually, this is different than any other time i've gotten it back, before it was never 'supposed' to be the last. weird.

 

[Nakamova]

Since you're out of practice, here's a handy list of the rules of the road (Boston-style):

1. When on a one-way street, stay to the right to allow oncoming traffic to pass.

2. Never, ever, stop for a pedestrian unless he flings himself under the wheels of your car.

3. Never get in the way of a car that needs extensive bodywork.

4. Honk your horn the instant the light changes.

5. Never use directional signals when changing lanes. They only warn other drivers to speed up and not let you in.

6. Making eye contact revokes your right of way.

7. Always look both ways when running a red light.

 

[2ndchances]

:roflmao: Nak! I think people from Toronto and Boston must have gotten together to write the list of rules!! While I have to wait to complete my medication overhaul before I can drive again, this is a handy reminder! Thanks!! :tup:

Tomorrow is your surgery anniversary, qtown! :woot:

 

[qtowngirl]

thank you besty !!!!! :dancing:

though i'm still not in the 'a life without seizures' frame of mind, it's getting less surreal by the day. you been there done that soldier and thanks (lol again) for your vimeo that gave me the strength to go for it. hey why not post the link here, along with a box of kleenex! very uplifting.

 

[Nakamova]

Happy Surgery Anniversary!

 

[qtowngirl]

:bigsmile: awww thank you so much nak! so sweet.
on that note did you ever come across mel's video (vimeo) when her seizures came back in may 2012, after almost 11 years seizure-free? she joined us that october, and through the vid i decided to change my life, called my e clinic a few days before christmas. such an inspiration that one, love you mel

http://www.coping-with-epilepsy.com/forums/f36/path-most-resistance-18513/

 

[qtowngirl]

*bawling* man this video carries so much emotion for me. just watched it for the umpteenth time (tho only once since surg) and the tears started falling as soon as the music began. amazing how much something becomes a part of you.
i remember watching it over and over and when i truly felt her strength, she became one of the main reasons i went through with it. we're the greatest of friends now and if i am ever unfortunate/devastated b/c my seizures came back there will be some relief b/c she is with me. i CAN'T imagine facing a 2nd surgery, mel is totally my soldier.

 

[Nakamova]

Yes, I absolutely saw it when Mel first posted it. It's so powerful. Epilepsy brings some heavy emotional burdens -- among them the unpredictability of seizures, the fear of relapse, the frustration with our own brains -- but it also seems to elicit some uncommon bravery and strength (based on my wholly unscientific observation of CWE members). One of the upsides of the internet is that folks like you and Mel can cross paths and make a real difference in one another's coping/healing processes (and make a difference for the rest of us too).

 

[qtowngirl]

we're both hugging you right now, thank you for such belief in us nak.

 

[2ndchances]

*bawling* man this video carries so much emotion for me. just watched it for the umpteenth time (tho only once since surg) and the tears started falling as soon as the music began. amazing how much something becomes a part of you.
i remember watching it over and over and when i truly felt her strength, she became one of the main reasons i went through with it. we're the greatest of friends now and if i am ever unfortunate/devastated b/c my seizures came back there will be some relief b/c she is with me. i CAN'T imagine facing a 2nd surgery, mel is totally my soldier.

Ummm, first of all... Nat, you do know that I'm with ya regardless, right? You're stuck with me now!! I hope that you never have to experience the devastation.

Both of you really know how to make this girl :crying:

I made the video to remind me of the strength I felt during some good moments, for time in which I may not feel so strong. I never really thought that it would inspire others, but my heart is overflowing that it has! Thank you both! :hugs: I'm actually planning on working on it again soon, as there is a whole other chapter to add!:rock: Plus, I love working on it; it's cathartic, and challenges what's left up there. Love you guys!

 

[Nakamova]

as there is a whole other chapter to add!

Excellent! Definitely looking forward to the next chapter...

 

[Brandley]

this thread is truly incredible. Lately I had been feeling down as I have been seizure free for 8 years and now i haven't been feeling myself. I was diagnosed at age 4 with cortical dysplasia and never quite got over the fact that I had this issue. Lately I had been contemplating brining up surgery or use of gamma laser on the lesion to my doctor as I want that sense of freedom from this illness. May i ask, how was your experience? I myself am a bit nervous for the fear of loss of motor skills. Congratulations on the procedure as well, I hope all is well!

 

[qtowngirl]

welcome to the site brandley.
i'm at 2.5 years post-op and it's been quite the journey. my short term memory has taken a real punch, but something you learn to live with over time. complete seizure freedom lasted 8 months and since been dealing with various simple partials, but NO GRAND MALS am at 959 days gm-free, and count every one.

this surgery changes most aspects of your life, some good some bad, but the reason for taking this risk is freedom from seizures and nothing should trump that importance. i'm surprised with CD since age 4 surgery hasn't been brought up to you. what type of seizures do you have?

 

[masterjen]

Hiya qtown!!
Great to see you around Send me a pm some time and let me know how life is.

 

[Nakamova]

qt, nice to hear an update! I hope life is copacetic up north. Both you and Jen should count your blessings that you don't have to put up with the endless and endlessly-annoying U.S. presidential election season. Not as bad as surgery of course, but quite painful in its own special way...