Nasihat Article: the first problem (tina the tuna)

46

posted by amazondebs

okay so i know nobody likes going first so i thought since i made this spot I'll have the first moan lol

my problem is actually quite unique although i know some of anda out their will be able to relate to it
actually to be lebih specific how unique my problem is under 50 people in the UK have it

as for what it is, well it has some fancy medical term for which i would have to go and look up but in lamens terms i have a tumor that has been growing since birth in the middle of my brain. Which trust me does sounds a hell of a lot worse than it is and fortunately it's not cancerous (well they're 99.9% sure it's not anyway)

now even though it's being growing since birth it only started to effect me a couple of years lalu as it's still about the size of a marble. The problem is it's gotten to be a possible threat and they may have to operate the options are
operate and risk a 9% chance of dying or
don't operate and probably go blind (the doctors aren't really sure about this so there's a chance i might not)
this may sound familiar to some of anda as i tried to make a pick about it to help me decide LOL
link

at the moment though i am awaiting some lebih tests and it's not that urgent as i have a couple of years before it will start affecting my eyes so i can keep ignoring it till then but it keeps pressing on the back of my mind (excuse the pun) so any komen on what anda guys would do in my shoes would be so helpful!

i thought i might just tell anda why i put the tajuk as Tina the tuna
my tumor was quite infamous at school as one of my Friends could not say tumor but keep saying tuna instead (was even funnier when she asked the lunch lady for a tumor sandwich) and so instead of keeping confusing the poor girl we decided to name her Tina it was easier for my friend to say and i think it makes it easier for most people to talk about it as it makes it sound less well less clinical

anyways I'm sure most of anda had already figured out that I'm not quite right in the head but now anda know why and hopefully this will encourage lebih people to share and post their problems :)

tina the tuna

I-Luv-L, jonas1fan and 44 others like this

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germany123 after reading this: i do believe in the collective power of prayer- seriously no matter how bad you think you are at it and no matter if you believe in it..just think about amazondebs for a moment and just send her strenght to make the right decision..i truly believe it can open possibilities no one thought about! this maybe sounds a little corny(sorry) but you are really in my prayers..

kateliness2 Along with everyone else here (I think), I'd take the surgery. And meeee's positive outlook should help. Think: 91% survival rate. That's *extremely* good odds, especially when dealing with an organ as complicated and delicate as the brain. My friend had lower odds for survival when she got a staff infection in her knee that she had recently had surgery on (tore a ligament). But she is now 100% fine, she's even off her brace. The medical world is so advanced these days. I hear all the time about extremely premature born babies that are barely a pound. And they survive! Your odds are very good, and you're obviously a very brave person to speak about this, which I think helps. You'll be in my prayers tonight, if that makes you feel any better :)

doonis I'd say you should operate. My uncle has a very cancerous brain tumor, and even though he'll probably die, he's had several operations that went fine. And his problem is that it's cancerous an keeps growing back. Once you get yours removed, you'll probably be fine :)

amazondebs well they think that to get rid of all of it I'll probably have to have radiotherapy and possible 2nd operation they don't know any further from that i sincerely hope your uncle is okay

doonis Well, at least you won't have to do chemotherapy or anything like that. And if you do choose to operate, good luck!

TARDIS I think the surgery is probably the best option. I think your extremely brave for talking about it, abd good luck with whatever you decide to do :)

ineedcoffee best of luck with whatever you decide, but I think surgery probably is good idea. I too have had many surgeries for different reasons that I won't go into some serious some not but it is all really a matter at how you look at it if you go into it. The more positive the better the surgery will go. My surgeon told me this, he said if you keep a positive attitude you will have a better chance and a speedier recovery as well. Whatever you decide you are in my thoughts, best of luck.

TweenaCat Oh, you know what I just realised? You're TEN TIMES more likely to survive this operation than not!! Or maybe that's really obvious and it's the first thing everyone thought, but it only just occured to me and it made me happier. It's a more the-glass-is-91%-full way of looking at the situation.

FGFan i think you should have surgery, rather than let the size of the tumour increase. But really it's up to you, and i hope you make the right decision, 91% is a really good survival rate.

milii You are so brave, really. I'd go for the surgery, although it would scare the hell out of me jaja Well, good luck with whatever you choose. =)

JoeLaveau Poated four days ago? How did I miss this?! Well since you have some time research would seem the way to go. The condition, the doctor, the procedure.the alternitives. And yes positive thoughts. I know you have many friends who send prayers,vibes, and all manner of positive energy. I'll be going the prayer route myself.

scififan thanks so much for sharing amazondebs. I know it encourages the rest of us to see how well you are soping with this major crisis in your life. I believe that you should get the operation if that is what the docs are recommending. The chances for a successful surgery are amazing! No matter what you decide,I wish you luck. I'll have to write more later since I've got a broken hand and typing is a killer :) You rock girl!

cutemimi I'm not really qualified to give any advice on surgeries (my only surgery was when I was 12 days old - so I don't remember), but a 91% chance of survival sounds good to me. I agree with TheCountess, though, that you should do your own research and ask your doctor lots and lots of questions (why do this treatment, how etc.). Try and find out as much as possible. This helps you make the best decision. And it shows your doctor that you are a patient that wants all the details (not one that tells him to just do whatever he wants). A friend of mine says she wants details information about everything her doctor wants to do. She thinks she gets better treatment that way. I think you're really brave for sharing this with us. You seem so relaxed about this. I hope everything goes ok for you whatever you decide. All the best to you. I will keep thinking about you.

Rachel5658 I can't really tell you what to do and quiet frankly i don't want to because that problem, is well nothing i've ever dealt with before sooo......but what i will say is that if i was you i wouldn't just wait around and see what it might do to me and do nothing about it, i would nip it in the bud before it nips me!!!!!! (ano that's weird but my neighbour says it all the time) If your a fighter you'll sail through the surgery no problem!!! Hope this helps you :) :) :) Good Luck!!!

waterlilybarb Being proactive in your own treatment will definitely help you get better care. As has been said, inform yourself of ALL your options (including alternative treatments), ask as many questions as possible, and maintain the positive attitude you already seem to have. Make the decision that is best for YOU, not because someone else wants you to. I've recently been through some of this with my Mum, as she has an inoperable tumour, and all of her doctors are amazed at how well she is doing. I might have made some different decisions than she has, but she's doing what is best for her, and it seems to be working. That's my 2 cents. Thanks for sharing, and best wishes on whatever you decide. :-)

ThinkPink20 Wow, I was trying to figure out the significance behind your pick, but now it all makes sense. Pretty much everything I'm about to say has already been stated. Shows you how original I am. I applaud you for being open about your medical health and for being brave enough to wake up each day and face your tuna. That alone is a challenge. Take my opinion with a grain of salt, because I am no one to be making medical decisions, but I'm with a majority of the commenters when I say surgery is a good choice. Your chances of survival are very good and it beats becoming blind. Good luck with your decision, and know that you have a HUGE online community of people supporting you and praying for you.

amazondebs lol yeah i didn't think it was apropriate to have a massive ramble on that pick to explain although judging my one of his comments i think knifewrench clicked lol the clever sausage anyways i know i've alread said this so many time but i just can't believe how much suport i am getting it really is so heart warming *wipes tear* even if Tina isn't pleased that your all voting to evict her i have been doing a bit more reasearch and although i am not the religious kind i dunno it may ound corny but maybe all these prays and good will thought are working because i do feel a lot more confident about this now and i am thinking of having the surgery at easter (hospitals not much for rushing lol)

placidcasual you could always poke your eyes out now and sell them on ebay

amazondebs erm well yes there is always that....

moonlighter Hi 9% is pretty good, espeially with brain surgery and to start with going under a general anaesthetic is one of the most dangerous things you can optionally do to yourself (not to be scary). I would personally opt for the surgery, but i wanted to provide some balance, the difference between death and being blind is huge, you can live a happy normal life being blind, and if its just your sight that you risk loosing then maybe thats something to think about. I'm from australia and there are two alternatives which may be relevant to your condition. One is a japanese formula which a man gave to his daughter (very young still bottle fed) with a rain tumor, the mixture managed to not only stop its growth but shrink it, its was a big news story maybe 5/6 years ago. more relevant is a doctor who was practising in perth, actually developed a new way to treat cancerous growths now as you said yours is unlikely to be cancerous but in my opiion it would be worth looking into him, on the downide our government wouldn't give him enough funding so he went back to i think scotland and im not sure if he is still operating, i know he left a trained doctor in perth to continue with his methods, i should probably say thats his methods are non invasive and do not require kemo or anything like it, he uses microwave therapy. If you want me to look for all the info on either just let me know. At the end of the day i would take the surgery, doctors are obligated by law to inform their patients of all the risks, this can sometimes prevent people from having surgery that they really do need no matter what the risk, your doctors would not be suggesting brain surgery because they feel like it. best of luck xoxo

amazondebs yeah i know what you mean about the doctors but i don't trust them because they contradict each other a lot and any info would be so welcome!

ThinkPink20 "you could always poke your eyes out now and sell them on ebay " Okay, EW! I'm not sure about you, Debs, but I acutally like my eyeballs. Please do not take this advice. *gets frantic* eBay is not the answer! There are other treatments! Please don't resort to this! Noooooo! :D

amazondebs ha ha ha ha *puts down giant tweezer* ohh okay just for you pink!

Edward901 i would take the sugery... 9% isn't that much and being blind doesn't really sound all that fun. i know my dad doesn't like going blind, he can't do the job that he really really wants to do because of it and your still young, think about waking up one day and not being able to see the color of the sky or what's on tv or even your mom's face when you tell her about your day... i think i might go crazy just because of that

fr34kygl i didn't know what you meant when you said something about a condition, i thought you meant general crazyness as all other fanpoppers. I know it's been said before but it was a couple of months ago so i'll say it again... I can't believe how brave you are for talking about it and just being so open. People say talking about those things helps you, but you don't realize how much until you really start talking. I know nothing about brain tumors but it sounds scary even though you've dealt with it a long time i can't imagine what it must be like for you to see different doctors and hear about different treatments and what not. So again, i almost can't believe you're 17! I would get the surgery as awful as it sounds and what happens after that too. But it would be so hard to get me into that bed without running away... i guess you have to do everything on your own time to make sure you don't have doubts. I admired you before, as a fanpop user but now you got a whole new level. You're clearly very dear to fanpop and to us fanpop users and you know you can count on us to say something silly or to be serious. I hope the decision making isn't too hard on you. I don't really pray, but i will definitely be thinking of you when i'm not on fanpop. Let us know what you decide so we can keep being the support team! ; ) ***

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