[stewie]

a few months ago i was diagnosed with an arachnoid cyst (cyst on my brain), its been there since birth, but been slowly growing, its now aprox 6cm wide by 5.5cm wide and putting pressure on my brain causing me to have grandmal seizures.

so im no longer allowed to work, nor drive, and im taking 8 pills a day to control it the seizures...

gone through multiple tests and met a few different neurosurgeons, and ive 1 more test to do and 1 last surgeon to meet. the last neurologist i met, i asked her if it comes down to my choice, can i have it removed because i dont want to be taking 8 pills a day for life..and she flat out told me no.

so my question here is this, has anyone had or known anyone who's had one before? i was told mines quite large....and i want it gone...i have a dream of getting on the fire dept...and right now im not sure if ill ever be able to get on knowing that i may have a seizure while on the job....the pills dont stop the seizures...they just weaken them down so they're shorter and not as violent...should it not be my choice to have it removed???? its something thats not supposed to be there and i want it the fuck out.

can anyone give me some input as to why they would not want to remove it??

[BrRsn]

Wow dude really sorry to hear that.

There's a few health professionals on this forum, maybe they can chime in..

But from what I've learned while I was volunteering at a Dr's office is that there's a cost/benefit to every operation. They don't want to put you in a worse place, or risk putting you in a worse place than you are now. I know it sounds scary to hear, but doctors/technology haven't advanced that far in respect to neurosurgery. A lot of times the possible risks of surgery are quite high compared to the effects otherwise, in your case seizures.

Neurosurgery in general is highly complicated, in terms of organs, we know the least about the brain. It is highly complex, and it can remodel itself when its subjected to shock/damage and it's all highly interconnected.

From what I understand there's a few ways to treat an arachnoid cyst, they can drain the cyst or they can remove it but removal involves removing a part of your cranial bone to gain access to the brain. The long term effects of this can be chronic pain, and they usually only do this if they have to i.e. to save someone's life.

If they drain the cyst, there's no guarantee it won't come back. Most of the time, they way they deal with it is by prescribing drugs to help combat the symptoms of the cyst.


Really hard to hear news like that man, I hope you can get all this under control sooner than later and hopefully start living a normal life again

[2 n r]

saw this thread, got curious so i googled it and found this vid, i thought mb u could relate

Dr. Hrayr Shahinian's Arachnoid Cyst episode of The Doctors - YouTube

hope it helps u in anyway. all the best!

[stewie]

interesting video...

i guess i'll just have to wait and see how this pans out for me

[rawr]

Best of luck to you stewie. Get well soon!

[subordinate]

Best of luck as well Stewie.

[JayEch]

wow. i currently have an outbreak of shingles that affects my right brain nerve or whatever and that alone scared me like fuck. i cant imagine how you feel. Best of luck to you.

[B!tch]

Did you see a neurosurgeon out at UBC yet?

[stewie]

I've seen several neurosurgeons(none from ubc...yet...ive already seen one of tge best ones in the lowermainland though)but right now I'm not do e doing all my tests. I've 1 more test next Thursday, an eeg sleep deprived/stress test in hopes to put me in a seizure while I have all the lil clips on my head.

After that, I've 1 final meeting with a neurosurgeon, and it'll be his call to determine if ill get the brain surgery or not...

Really hoping I get it...so I can return to work and such... I don't think my work will be to happy if I tell them they need to accommodate me with a new position that's safer for me..
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[stewie]

had the sleep deprived test, met with the neurologist 2 days ago.

they got the results they wanted. i had a seizure during the test so they could see the abnormal brain waves.

shes gone ahead and faxed my papers to a surgeon now, so now im waiting for my consultation with him.

guess its brain surgery time for me!

[kitsune]

Glad to hear since thats what you wanted.
Best of luck with the surgery!
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[HonestTea]

Best of luck stewie!
Posted via RS Mobile

[Prolowtone]

Best of luck

[stewie]

sweet, saw another surgeon yesterday. i'll be going for surgery. but it'll be a lengthy process.

the cyst has deformed and damaged my thalamus, so before i can go for surgery, they need to do psychological-neuro testing to me to check for memory loss etc...i have a video eeg test, where i'll be hooked up for several days straight in a hospital, and after all that, then they'll book a surgery date!

but...im gettin surgery!!! bout fuckin time...having seizures every other day, some at home, some public, is completely ruining my life!!!!

[dhari]

best of luck bro! keep us updated! and take care

[J89]

Take care brother and be strong, but I can tell you already are.

[fliptuner]

Any updates on your surgery, stewie?

Also, how has this affected your ability to drive and the status of your license, if any?

[stewie]

Any updates on your surgery, stewie?

Also, how has this affected your ability to drive and the status of your license, if any?

one of my neuro surgeons says it needs to come out asap.

so on may 7th im going for a sleep deprived eeg test followed by a psychological neuro exam with a different neuro surgeon.

the two surgeons are going to get together and decide whats best.

turns out the part that's deformed (my right thalamus) is pretty crucial part of the brain, it controls your senses. so im told don't be surprised IF I lose some vision/hearing/become sensitive to touch (basically anything to do with the 5 senses). but reading about it online doesn't sound to nice lol..apparently damage to the thalamus can result in permanent comas or end up having insomnia.


as for how its affected my driving...im no longer allowed to drive, scuba dive, ride my motorcycle, go out on my own, use power tools, go to work(good thing I got a sweet ass gov't job and they put me on long term sick leave :D). if the two surgeons both agree it needs to be removed, i'll be allowed to drive after 6 months, but having a successful surgery will still give me seizures for life he said. could be once every year...once every 5 years. but for every seizure I have after surgery, I have to get a 6 month ban on everything to be "safe".

kinda sucks...but ive now seen every single episode of bait car, cops, Alaska state troopers, and pretty much every other show that's on tv lol.

[SiRV]

Best of luck man, keep us posted with how you do

[Culverin]

Stewie, this blows man.
I am very sorry this has happened to you.
I really hope everything goes smoothly.
On the upside, at least you're in Canada where after this ordeal, you won't be bankrupt.

If you ever feel the need to rant and rage, I would be gladly lend my ears.

[Ulic Qel-Droma]

good luck dude, i mean it.

[stewie]

Stewie, this blows man.
I am very sorry this has happened to you.
I really hope everything goes smoothly.
On the upside, at least you're in Canada where after this ordeal, you won't be bankrupt.

If you ever feel the need to rant and rage, I would be gladly lend my ears.

lol thanks guys, but ive no need to vent or rage. im honestly not to worried about it.

but, I had a sleep deprived eeg test followed by the psychological neuro exam (dr was quite cute by the way...she couldn't have been more then 35). had to tell her the story from square 1, how often they happen, etc etc. she had to call and interview a few of my friends who've seen me have them while out and about to get some knowledge as to if my arms go rigid or do they shake, jaw clenched, bleeding from mouth, eyes open etc since im unable to tell her those things.

she asked how its effecting my work. told her what I do, and that I've been applying and trying to get onto a fire dept for the past year but no longer can until this is all over with. so right after hearing that she just stopped and instantly put me on the surgery list.

sooooo, she wants me to start taking some other pills, she says they'll have a 10-20% chance of being better but I need to gradually incorporate them, then start weening off the current ones, and that alone will take 3 months...so I have an apt with her again in aug. if in aug the pills have done squat, then they continue with other testing until im all done that way by the time im done tests, i'll have already been on the surgery list for half a year.

this whole thing is like a never ending story lol...every time I see a dr, they tell me i'll only have 1 more dr's visit before they decide...each time I see the next dr, they have a new test waiting for me lol.

so, ill be off work for a bit longer lol.

[dinosaur]

kinda sucks...but ive now seen every single episode of bait car, cops, Alaska state troopers, and pretty much every other show that's on tv lol.

tried Deadliest Catch?

[stewie]

tried Deadliest Catch?

lol, sadly yeah...

I ended up buying a book of brain puzzles, so those have been keeping me occupied during random times. im really interested in learning about stocks, so I play with virtual traders for a bit each day....do a few workouts with what I can. throw a ball against a wall and watch my dog try to catch it, kinda like playing pig in the middle lol. I text so much during the day that my thumb actually hurts lol.

[SiRV]

Read up on the 'couch potato method'. It just might blow your mind, I spent several months researching it before building my portfolio

[stewie]

Read up on the 'couch potato method'. It just might blow your mind, I spent several months researching it before building my portfolio

heh, I live on the couch :p

I can do my puzzles/crosswords/Sudoku, throw the ball against the fireplace mantle and watch my dog try to catch it before it bounces back to me, laptops on the coffee table, phones wedged somewhere between a cushion until I need it lol.

only real time I need to get up is to let the dogs out to pee, or when I have to pee, or get food from the fridge.

[spideyv2]

read the thread title and was tempted to leave a trollish post, until I actually read the OP

best of luck man, seriously

[stewie]

was in this section reading threads, figured I might as well update...

oct 15 (less than an hour and a half away), marks the 1 year date of me finding out about this.

progress made?

basically none...


test after test after test. each test leads to a new test.

BUT, 21 pills a day keeps the seizures away...well...80% of the time.

gets quite embarrassing when im out at a restaurant with friends (few weeks ago) and during the course of dinner/drinks I have 5 seizures and don't even know about it until I get home and they tell me. (after waking out of one ive complete amnesia of it happening, as far as I concerned, I was just getting up from dropping something on the ground...my friends know not to tell me ive had one or else I get extremely defensive saying I didn't etc etc)

still have all my restrictions...no work, driving, scuba, shooting range, going out alone, working out/lots of physical exertion...

oct 15 2012 - 189lbs
oct 15 2013 - 158lbs due to not being able to work out etc

im supposed to be returning to work though, im no longer allowed to do my regular job, so my union has to create a job for me that accommodates to my restrictions. ive been told they've found me a job, but its just a waiting game until all the forms go through, HR talks to insurance etc, wait for my "interview" type of meeting and then return to work on a part time basis. luckily my works yard is less than 5 minutes from my house so I can just walk there.

at the rate this is going, i'll update this next year lol :p

[stewie]

forgot about this thread lol

2 years ago in just a few weeks.

pills range from 21-30 pills a day depending how the weeks have been.

well. sept 25th im goin in for an open craniotomy.
as its grown in size, its done damage. i need to have the cyst ripped out along with a right anterior temporal lobe resection and having to shave the hippocampus a bit(i think thats what they said about the hippocampus).
risks involved - i WILL have visual memory loss, and my left eye wont have the same strength it has now.

surgery is 70% - 80% success rate, compared to pills having a 5% - 10% success rate at stopping seizures.

recovery time is few days in an ICU, a week in a regular ward, mind blowing headaches for the next few months, and hopefully freedom after that!

while asking the dr if i can film it, he told me no. but he will take photos for me. he went on his computer and typed in open craniotomy on google and this is the video he showed me. i'll be having the same procedure, but this only shows the opening and the closing.



Craniotomy - Opening and Closure, Craneotomia, краниотоми� (Thrace-Greece) - YouTube

[Lowered_Klass]

Holy shit dude.


Safe to say we're all pullin' for you. Best of luck.

[stewie]

Update

Had brain surgery on Thursday morning

Came out of it in pain beyond belief. Cried the entire first night while attempting to sleep. Morphine every hour can't even take this pain away.

Was taken out of the ICU yesterday afternoon. Regular ward now. I can't eat - surgeon told me that as he had to peel the skin back over my face, it stretched my jaw muscles to the point where I cried while trying to eat grapes.

My right eye is now swollen shut. He removed a chunk of my brain the size of your thumb.

Morphine every hour and on every 4th hour it comes with t3s.

I've the attention span of a hummingbird, and staying awake for longer than 15 minutes gives me throbbing headaches beyond belief. This is the kind of pain I would never wish upon someone else.

Can't get out of bed without someone holding my arm. My balance is fucked right now.

I know it doesn't mean much saying this as 99% of my friends don't use this site, but it's still worth me mentioning it.

I want to say thank you to my girlfriend and my best friends who've helped me through all of this and supported me along the way. Probably wouldn't have been able to do it without them.

I should be discharged on Monday hopefully. There's a guy somewhere down the hall that screams in agony shouting "kill me now". Not the most pleasant thing to hear

Hopefully this will allow me to get my life back on track and leave me seizure free for life!!!

[Alby]

wish you a speedy recovery!

[subordinate]

+1, Keep on truckin'

[Lowered_Klass]

All the the best man!

[SoNaRWaVe]

wish you a speedy and smooth recovery stewie. i can't imagine the pain you're going through, it sounds like a nightmare from hell.

but in the end, i am sure you will be glad that you had done this and knowing how painful it is, you wouldn't hesitate to make the same decision again.

keep it up!

[nma]

Wow, what a shitty past few years for you... I hope you get well soon, and can move on with your life! I wish you all the best.

[stewie]

well, now that I'm home and bored, I figured I'd share a photo or two :)

http://s3.postimg.org/x84t0r2cz/me_scar.jpg
my sexy scar for life...as far as future women are concerned, it was a shark attack while surfing in australia! the cut goes past my hairline, so it'll always be visible.

however, my girlfriend wants me to die my hair black and take up this look...
http://s8.postimg.org/8vczkhq2t/me_zorg.jpg


trust me, this feels worse than it looks...

laying on a pillow, shift my head during the night, stretches the scalp, wake up with bloody face and pillow. yay...

and I know what your all thinking, and yes, I know I'm a stud muffin. :)

--edit--

forgot to add:

I can barely open my jaw. i can open it maybe 1 1/2 inches at most before its maxed out. i asked surgeon why, his response: "when I peeled your skin over, your jaw muscle came with it and its now overstretched. it'll take a while for it to ease up, just keep trying to chew and little by little it'll be back to normal"