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HealthCare & Wellness Breaking the Chains of Addiction. The Last Door Recovery Society
Mature discussion surrounding important health issues and concerns. Alternative therapies, healthcare questions, discussion of community resources, peer support help, group therapy, etc.
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??
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
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.
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.. Posted via RS Mobile
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!!!!
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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 ). 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.
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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.
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.
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.
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). 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".
