Growth

[Sherwood]

Hi everyone, I have an acoustic neuroma of 6mm and it’s been unchanged in size for 2 years. What’s the chances it will start to grow if it’s been stable for 2 years. Does anyone have any experience with this?

[whitefishbay]

Well I found out I had one in Oct this year and mine is 5mm. NHS has me on wait and watch. I must say my ear seems deafer than normal lately....do you have any deafness?

[Sherwood in reply to whitefishbay]

yes I have deafness in my right ear and other symptoms too, dizziness, balance problems

[whitefishbay in reply to Sherwood]

I find you don't get much info - it is up to us to do the research which is why Health Unlocked is so great.

[Sherwood in reply to whitefishbay]

yes I agree and the way I was told my diagnosis was as though they just told me I had a spot on my chin. Just a referral and bye wait for that now.

[whitefishbay in reply to Sherwood]

Same. In fact the registrar told me and then stepped out of the room so I took a photo of the screen so I could remember vestibular schwannoma. I had no idea. The registrar told me 'don't worry, I'll book you in for an MRI'. Poor really as it is a rather big deal (brain tumor) no matter the size.

[Sherwood in reply to whitefishbay]

yes it is very worrying at the end of the day it is a brain tumour

[whitefishbay in reply to Sherwood]

on the lighter side now that I’m 1/2 deaf it’s my excuse for not hearing things.

[Kristyll]

it may stay OK it there are so many variables and I believe your age

[Sherwood in reply to Kristyll]

sorry, what do you mean by age. In regards to if it gets treated earlier or from a growth standpoint

[Kristyll]

I have heard people ask if it is hormone related in any way when they are young

[DDwyer1]

Hi, I was diagnosed with a 9mm acoustic neuroma over 5 years ago in February 17. I have had yearly scans with one two yearly at one point and there has been no change. I am due an MRI scan next May 12 months after the last. Hope this helps. Damian

[Sherwood in reply to DDwyer1]

thank you for your reply that’s good to know and hope this continues for you

[Bad1]

Hi, many of us are on watch and wait as up to half of AN ‘s don’t show any growth. There is no way they can tell if or when it may grow and it’s not related to age .growth if it happens ,may be sporadic, but thankfully usually slow. As a grade 1 tumour, it will not get a medic excited and sadly , the news is often given without tact and diplomacy. Many A n’s are incidental findings that a few years ago may not have been detected, you may have died with it completely oblivious of its existence and attributed any symptoms to something else. I feel that I have sent down the rabbit hole of being the physical manifestation of a medical diagnosis

[Sherwood in reply to Bad1]

thank you for your answer, I agree with your comments completely

[Bluenorm]

I’ve been on watch and wait for 10 years and mine hasn’t grown.

[Sherwood in reply to Bluenorm]

That’s great to hear

[DesertLady2 in reply to Bluenorm]

But how are you getting on with it...mine has been at 8 mm for 1-1/2 years. I was told to come back in 1 year for another MRI. I know it hasn't grown in a year, but it is very problematic. Besides the constant ringing, lack of hearing....I have very poor balance for which I went to vestibular PT (which didn't help much) but the headaches are maddening. Migraine like headaches on the tumor side, nausea, lack of balance and neck pressure. I can't imagine living like this the rest of my life. I just turned 79 and the doc feels operating might be risky and radiation had its side effects also. So what do they want me to do continue to suffer from these maddening headaches every day. Besides the neurosurgeon, he sent me to a neurologist for treatment of the headache...she opted for vitamin therapy and told me not to take any painkillers more than 2x a month (what???) I am not happy! My left eye also tears and pains me from time to time!

[Sherwood in reply to DesertLady2]

sorry to hear your struggling with your symptoms, I am also finding them difficult it’s the constant everyday grind of them that’s very frustrating. I am finding that consultants and Drs don’t seem to care much about it. It’s not going to kill you so what’s your problem kind of attitude

[Bluenorm]

My hearing is poor in my affected ear but found hearing aids help dull the tinnitus and Improve the hearing .

I think like a lot of contributors learning that you have a brain tumour is an awful shock ,and the ENT consultant was very matter of fact and didn’t deliver the news with any empathy . I was told at the time you will have to have an operation and lose my hearing on that side . However like everyone I Googled it and that didn’t help the anxiety but my GP put me at ease and I am under Guys in London . A totally different experience and it was explained I was going under watch and wait and would need an MRI every year . ( now 2 years ) . A part from the hearing and tinnitus I don’t have any other symptoms.

[levelslass]

Your ENT consultant should have explained. You're probably on watch and wait? If you start to fall over involuntarily as you turn, or have a feeling of fullness it might mean the tumour is growing along the bit of tubing that leads to the brain cavity and houses the vestibular cranial nerve. Or if your face on the side of the AN starts to feel numb as if you've been injected by the dentist or you get a twitch under your eyelid, that can mean the AN is affecting the trigeminal nerve, another cranial nerve. Otherwise 6mm is not big. Avoid putting mobile phone to ear, use ear pods if possible. Avoid caffeine and alcohol which might aggravate tinnitus. ANs are always benign but it's the size and their impact on nearby structures that seems to cause the problems.

[levelslass]

PS go for fractionated stereotactic radiotherapy not surgery or Gamma Knife. If FSR is not on offer get your GP to refer you to somewhere that does FSR. And look up all the latest research on Pub Med. Good luck