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benign tumour in my brain


sara-pezzini

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got diagnosed yesterday, and i have a 2cm benign tumour in my brain, it is called Acoustic Neuroma

does anybody have any experiences with this or know of someone who does? please no horror stories, i am freaking out enough as it is.

but i wonder, did anybody have it and got radiation or surgery and have some encouraging words for me?

it feels weird that there is this thing in my head...probably been there for years since it grows really slow, usually around 1-2mm a year, didn't have real symptoms until i developed trigeminal neuralgia, excruciating pains in my lower jaw that came and went, dentist send me to neurologist, got an mri and this came out.....

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That must be very scary. But it's benign, and that's the good news.

 

So if it grows slowly, does the doctor think it will eventually cause more symptoms and/or need to be removed? Would removing it be advisable to eradicate the trigeminal neuralgia? Your doctor must have told you what to expect, and whether it's operable or not?

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thank you, no i got the diagnoses yesterday from my neurologist, and he is sending me to an oncologist team and an ear doctor since they both have to treat this, he told me they will know more than he does and he doesn't want to say anything that might not be true, so i now have to go to the ear doctor next week and then the oncologist team asap, and only then will i know more....

there are three options, wait and do nothing and monitor it's growth, which seems unlikely because of the TN i have, radiation to see if it shrinks, or surgery to remove it, but they need to look further to make sure which is the best option, so that will take more time...

it is not life threatening, unless it grows towards the brainstem, that can be fatal.....

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My best friends mum had a brain tumor about eight years ago. She found out she had it due to becoming very forgetful and confused. They removed the tumor and all is good. She has regular check ups and everything looks great. Also my next door neighbour had one around 15 years ago and she is absoloutly fine nowI'm not sure if she had it removed she just said she had one but was fine now.

 

I've heard of other people having them and to be fair everyone I know whose had a benign tumor has been fine. Brain cancer is a whole different ballgame.

 

I know that hearing tumor...even if it is benign has to be terrifying. But I have every faith you will be just fine.

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oh and yes, the neuroligist was nice enough to start with there is a tumour! and then proceeded to tell me it was benign, but i was in shock, almost didn't hear the rest.....nice!! not!

 

oh good god ...no exactly ..I wouldn't have heard past that either ..I owuld have been on the floor . Have you had a call off dad yet today ..

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I don't have any knowledge on this issue, but I did hear most people who have benign brain tumors recover just fine after surgery. Some live with the tumor for the rest of their lives, because it stays small and there's no need for treatment. I mainly wanted to say that I'm glad it turned out to be benign (even though it's still a scary process), and wish you lots of health. Sending positive thoughts your way!

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Thank you! I don't know what is considered big or small with these type of tumours.i know if it's small they can stay untreated and just be monitored frequently in case they grow.

Mine is 2cm so i don't know, plus i have some symptoms so not sure if that affects the choice of treatment or not, then again i read that the symptoms may always remain even after treatment.

So basically there is a whole lot of i don't know...

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I had a friend who had a benign brain tumor and she ended up just fine. It was growing off her pituitary gland and in a really hard place to reach, but they got it with no damage to her at all.

 

A neuroma is actually growing off the nerve itself and not the brain. So it is only pressure on the brain (and pain in the nerve) and not tangled up in the brain itself. So he won't actually be cutting into your brain, but removing it off the nerve. So that is really good news because it is not in the brain tissue itself. So it is not even a brain tumor per se, but a nerve tumor, and since it is benign it is not invasive and won't jump to the brain itself.

 

also keep in mind that brain surgeons are among the smartest of the smart and best. they don't let ninnies become brain surgeons so you are in good hands. They also have many incredible medical equipment and computerized tools they use these days to help image the tumor/brain and guide them to know exactly where they are when they go to get the tumor. so surgery on the brain these days is extremely sophisticated and I'm sure they can go in and get it just fine if you all decide that is the course to take, whether that is surgery or some kind of chemotherapy shrink remove it.

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Thank you, that was really helpful. Yes i know that is why this is called a tumour in the brain and not a braintumor, till yesterday i wouldn't have known there was a difference.

I have meanwhile read that my tumor is a medium sized and those are usually monitored or treated with radiation unless it's growing fast or towards the brain stem. Surgery is the most invasive, so I'm leaning towards radiation now without further info, but it's quite possible that they will monitor it first for a while.

Surgery sounds scariest at the moment. .. It's good to read up and get more info and the more i read the more at ease i feel.

Though it still sounds weird...

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That's not weird at all... it is helping you get back a sense of more control and balance. It's good that they can treat it with a less invasive moment. Just be kind to yourself and recognize that this might be a tough few months to get past this, but you'll be fine in the end. They have extremely focused pinpoint radiation these days to handle things like this, so you have an excellent prognosis!

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My sister-in-law had one removed about 20 years ago. It was at the front of her brain and they went in through her nose to remove it. She felt a little feint and sick recovering at home but has had no problems since. Good luck and take care.

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Two stories --- one old, one new.

 

Friends mother had benign tumor removed surgically 40 years ago. She lived to 84 with no problems.

 

Hairdressers daughter recently diagnosed after sever headaches. Also benign. They are simply monitoring at this point. No surgery or radiation scheduled.

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Thank you! Mine is by my ear so they can go through the ear or behind the ear, surgery almost always means losing all hearing in that ear permanently, so from what i read if you can still hear they often opt for waiting and monitoring or radiation.

It is pressing against my ear though, i hear less than with the other eat and it feels as if my ear is full, i thought it was earwax but guess it's this.

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I have no experience but I just want to say that it is good to know what was causing your trigeminal neuralgia. I have heard that is extremely painful.

 

Glad to know it is benign. Once you meet with the ear doc and the oncologist you will know more and have a good plan of action.

 

Thinking of you! Hang in there

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Thank you! Yes TN is excruciating, and i am glad they found the cause, the only downside is that if treated it doesn't mean the TN will go away and can in fact get even worse.

I am now pain free for a few months and then the pain hits me and lasts around 2 to 4 weeks, so that sure is no fun, it's hell in fact, every little movement with your face hurts and every touch of the face hurts and nothing helps. But at least i have pain free periods as well.

I have meds now that are also prescribed for epilepsy and those calm all the nerves so they have severe side effects and I'm dreading the next attack and having to start with those meds.

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got diagnosed yesterday, and i have a 2cm benign tumour in my brain, it is called Acoustic Neuroma

does anybody have any experiences with this or know of someone who does? please no horror stories, i am freaking out enough as it is.

but i wonder, did anybody have it and got radiation or surgery and have some encouraging words for me?

it feels weird that there is this thing in my head...probably been there for years since it grows really slow, usually around 1-2mm a year, didn't have real symptoms until i developed trigeminal neuralgia, excruciating pains in my lower jaw that came and went, dentist send me to neurologist, got an mri and this came out.....

 

My mom does. Has had it for years. Has not grown, nor had any problems with it. She gets it checked annually.

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