Advice Opinion Article

the first problem (tina the tuna)

Opinion by

amazondebs posted over a year ago

46 fans

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 you out their will be able to relate to it
actually to be more 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 ago 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 you as i tried to make a pick about it to help me decide lol
http://www.fanpop.com/spots/picks/picks/results/42536

at the moment though i am awaiting some more 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 comment on what you guys would do in my shoes would be so helpful!

i thought i might just tell you why i put the title 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 you had already figured out that I'm not quite right in the head but now you know why and hopefully this will encourage more people to share and post their problems :)

tina the tuna

66 comments

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	dazl said: Honestly, if it was my choice, I would go for the surgery. I would take the chance. Look at surgical stats nowadays to see the success rate. posted over a year ago. last edited over a year ago

	Booyahboy said: Personally, Id agree with Dazl, but then I couldnt handle being blind. Id go for the surgery, but really, its about you and whether you think you could live without knowing whats gonna happen, and even IF its gonna happen, It just sounds like a sword of Damocles to me. 9% sounds like a low chance to me, but you should seriously consider if you could live with the consequences of not having the surgery. Maybe walk around with a blindfold on for a day. posted over a year ago.

	knifewrench said: I'd also choose surgery, but mainly because of my beliefs. If I wasn't a Christian I'd have to think twice about it, but I think I'd still have it operated on. I hope you get better :) posted over a year ago.

	pirateroro said: I would go for surgery. And i think you're so brave to talk about it like this :) posted over a year ago.

	amazondebs said: thank you that means a lot to me! well if i do have the surgery at least i'll have lots of time in hospital with nothing else to do but fanpop! posted over a year ago.

	edennirvana said: I agree...surgery sounds like the best option, just inform yourself properly so you can make an informed decision. posted over a year ago. last edited over a year ago

	germany123 said: hmm that sounds like a tough one and pretty intense- so thanks for being so open about it..just out of curiosity: have you tried any alternative treatments? posted over a year ago.

	amazondebs said: actually no i haven't Germany123 i didn't think you could do that for a scenario like this? (i'm not very well informed on alternative medicine at all) posted over a year ago.

	germany123 said: well the way i understand your article the problem seems its growth!? the size of it!? pressing on the tissue around it!? you said that the tumor itself is not cancerous!? so maybe something like traditional chinese medicine(herbal medicines, acupuncture) or homeopathy could at least decrease the size or stop further growth...i think i will write a message to you directly before i get burnt for witchcraft! posted over a year ago.

	knifewrench said: Personally I'm not a big fan of alternative medicine, and I'll leave it at that before I start getting into a rant. posted over a year ago.

	amazondebs said: ha ha ha hmmm you learn something new everyday (and not just about santa) that would be really helpful if you would posted over a year ago. last edited over a year ago

	germany123 said: yay knifewrench!! glad we can leave it at that ;) i totally understand if people dont believe in it- i never did until it helped me! posted over a year ago.

	knifewrench said: Acceptance/tollerance-of-other-people'ss-beliefs high five! <WPSH> <CLICK> posted over a year ago.

	amazondebs said: you never ever considered it knifewrench treads carefully posted over a year ago.

	knifewrench said: As far as non-scientific approaches are concerned, I think I will stick to the Bible. Unless there is a holistic-medicine approach which the church says is ok, I'll choose surgery over alternative medicine. posted over a year ago. last edited over a year ago

	amazondebs said: fair enough posted over a year ago.

	knifewrench said: Wow! It's 02:00AM! posted over a year ago. last edited over a year ago

	amazondebs said: i know don't you just hate the time different it's actually 2:10 where i am posted over a year ago.

	knifewrench said: My clock must be slow.... posted over a year ago.

	amazondebs said: lol we should get some kind of award for being able to draw the topic furthest away from the original topic! still not going to bed? half 2 eyelids droop posted over a year ago.

	germany123 said: knifewrench i have two questions what does WPSH mean? and:As far as non-scientific approaches are concerned, I think I will stick to the Bible. Isnt the Bible and its stories something that we belive in,too? Something without scientific evidence? posted over a year ago.

	knifewrench said: WPSH is the noise "The Todd" makes when he is high fiving. The stories of the Bible have always made sense to me, I can't say that I understand the reasons behind therapies such as acupuncture. posted over a year ago. last edited over a year ago

	germany123 said: the todd!? obviously part of a spot im not a member of :) what you say makes sense..and is probably true for most things..and thats how it started for me. like i said: i never believed in it (i thought holistic medicine was for people who eat lots of whole grain stuff ..and dont shower)until scientific medicine couldnt help me anymore i started to read about it- and am now convinced because i experienced it myself. posted over a year ago.

	amazondebs said: yeah acupuncture is not something i fancy trying i have daily injection and so many blood test and i have come to the conclusion sharp metal+skin=pain+badness! do they have scrubs in Germany? I'm not part of any organized religion but i do like bible stories and i always have found comfort in their morals posted over a year ago. last edited over a year ago

	germany123 said: we have scrubs..but i never watch it. btw acupuncture needles dont hurt when used correctly.they are fine enough to fit through a regular injection needle. just saying.. oh i did my research. i now know what the todd looks like :) posted over a year ago. last edited over a year ago

	tessajanuary said: Acupuncture really isn't that bad. I'm scared of needles (I've passed out twice when getting shots :S ) but I got acupuncture for some tendonitis and seriously, it didn't hurt at all. There's a tiny poke when the needle first goes in, but it feels just about like scratching yourself lightly with a fingernail. Other than acupuncture, I've not tried too much other alternative medicine; but I definitely agree with germany123 that you should look into your options with it, even if you decide not to pursue it any farther than that. Also, I agree with Booyahboy: you should walk around for a day with a blindfold. That would be a good thing to try. posted over a year ago.

	Snerkie said: It's good you can talk about this so easily, people that are higher spirits will live longer because unhappiness can make these things worse at times. As it has been said i would say definitely try acupuncture as a lot of things have been healed or relieved that way and if you're unsure about the surgery it could put it off. But ask your doctor first, and tell them to be open minded because some doctors may be all "noooo way, never!" to alternative things. Also if you have a alternative health store near you you could inquire there about things. posted over a year ago.

	amazondebs said: right blindfold for a day it is then guys although i might get some funny looks at college and that's really comforting to hear snerkie! posted over a year ago.

	TheCountess said: Wow! you really are brave to talk about all of this! You weren't kidding when you mentioned that you had medical problems. My first thought would be to have the surgery. Find out exactly what the tumor or growth is called, and use the internet for some of your research. I'd stick to real medical sites, because things written by laymen might (and probably do) have incorrect or misleading information on them. After you've covered the bases with that, see if you can find out anything about treatment options and success rates. I don't know how much you know about your doctor, or how much you trust them, but see if you can find out more about them or the ones who might perform the surgery. There's a lot a quacks in all fields of medicine, and you want to make sure that you have someone you can trust. Ask as many questions as possible. Actually, write them down before you go, and take the quesions with you. If you're anything like me, you'll forget half of what you wanted to ask without a list. If there has been a noticeable change in the growth rate within a shorter time period, waste as little time as possible. The larger it gets, the more it will affect different control functions to your body. It will also be that much more difficult to remove, because it will be covering a higher percentage of brain tissue and nerves. I think the larger it gets, will also increase the odds of it becoming malignant. I'm not sure about this, hence the research and asking your doctor lots of questions. I'm still thinking, the smaller it is, the easier it would be to remove with less serious damage. PLEASE, PLEASE, DO THE RESEARCH! P.S.: I hope this all made sense. I've been up for over 36 hours, and I'm not sure if my brain, vision and my typing are in sync. Also, I don't want to sound selfish, but you've recently become a very close friend, who I care about a lot! I want that to last as long as possible!!! BIG HUG!!! posted over a year ago.

	amazondebs said: aww thank you! that honestly does mean so much to me! lol and your allowed to be selfish when it comes to that wipes tear massive hug posted over a year ago.

	aholic said: I will just say, that if you can get a surgery and there is only 9% risk, then I would do it. But still then the 9% is there. I would do it, because it's still important for me to be able to see, so I would take the risk. 91% chance for surviving is more than other surgeries. Be glad that there is small chance to die. If I were you, then I would do it, because I will rather be healthy than blind, when the chance is so big to survive. I hope you will get a really great future, and I think it's good, that you can share your feelings with us. posted over a year ago.

	TweenaCat said: I would get the surgery. Death would still be better than a difficult and painful life but remember IT IS ONLY 9% so try not to get too scared. There is a smaller probability of dying than going blind in your situation, and the surgery is your only chance to be totally healthy. I'm not religious so I don't pray but all of my wishes from now on is that you will be okay. I deeply admire your courage and ability to keep a relaxed attitude in writing about it. I know I couldn't. posted over a year ago.

	amazondebs said: once again thankyou honestly guys you are all so great! holds out arms hey yay i got a featured soapbox go me!!!! and tweenacat you don't know your own personal strength until your tested posted over a year ago. last edited over a year ago

	theraconteur said: I would take the surgery. My sister is in medical school, and I asked her if a 9% chance of not making it was really high and she said there were risks like that for all surgery, and if it's brain related surgery, that seemed like very good odds to her. If it were me, I'd take the surgery because I have so many things I want to do later in my life (travel, have kids, win a nobel prize (lol)) that I wouldn't want to risk blindness or other unknown issues. But that's just my two cents. Best of luck with whatever you decide. Just research lots and be informed of your options and all aspects of your decision. posted over a year ago.

	meeee said: It's up to you but personally I'd go for surgery because I wouldn't like to be blind and if I did die it's what was supposed to happen and there would be nothing I could do and 9% is low so good luck I don't think I was much help but remember what happens, happens You'll be in my prayers : ) (\__/) (=','=) (")_(") posted over a year ago. last edited over a year ago

	amazondebs said: once again thank you so much all of you it really means a lot that you all seem to care so much! posted over a year ago.

	TweenaCat said: Hmm, I don't know about that, I'm not very brave. Still, um, hoping for the best for you! (praying sounds so much more impressive! But my prayers won't do much good because I've never prayed before in my life so it probably wouldn't count for much) hugs :) posted over a year ago. last edited over a year ago

	amazondebs said: lol thought prays comments all gratful comfort and trust me you really do never know! although touches wood hopefully you'll never be put in the position where you have to find out posted over a year ago.

	meeee said: I know a woman who had a cancerous brain tumour the size of a golf ball removed sucessfully and yours is non-cancerous and smaller than a golf ball and I don't know if this helps but don't look at it as a 9% death rate look at it as a 91% survival rate. posted over a year ago.

	amazondebs said: actually i never thought of it like that hmmm 91% survival rate i like the sound of that! posted over a year ago.

	Cinders said: Well it looks like the other fine folks here have this covered. I don't feel qualified to advise you on this topic, but I did want to say a few things. My uncle had a brain tumor and had it removed, but I'm not too close with him and don't know much about that. I personally would take the surgery, but I understand why you're nervous. But meeee is right, the glass should always be half-full in scenarios such as these. posted over a year ago.

	germany123 said: 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.. posted over a year ago.

	kateliness2 said: 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 :) posted over a year ago.

	doonis said: 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 :) posted over a year ago.

	amazondebs said: 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 posted over a year ago.

	doonis said: Well, at least you won't have to do chemotherapy or anything like that. And if you do choose to operate, good luck! posted over a year ago.

	TARDIS said: 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 :) posted over a year ago.

	ineedcoffee said: 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. posted over a year ago.

	TweenaCat said: 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. posted over a year ago. last edited over a year ago

	FGFan said: 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. posted over a year ago.

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