DO's and DONT's with having an Acoutsic Neuroma (newbie)

[shameless_stud]

Hi everyone,

I was wondering if people could help me as I don't know who to turn to. I've recently been diagnosed with a 1cm Acoustic Neuroma on my left side. As you all know, it's devastating news. The worst part was being told my hearing loss/buzzing was due to 'swelling of the nerve'. Was later revealed by the hospital that it was actually an acoustic neuroma - I was at the hospital by myself too! I would of took someone with me if I knew it was just going to told by mistake! Someone apparently was meant to have told me before the appointment at the hospital.

Anyway, I do have some questions to ask the people who have been more informed about this condition more than me!

It's sounds silly but should I be avoiding roller-coaster rides and flying by plane etc? I only ask because I'm due to go to Alton Towers (in the UK) which has really fast and high rides there. I don't want my tumour to burst or anything lol, can anything bad like this happen?? My symptoms are simply hearing loss (50%) in left ear and tinitus style noises (really annoying) . I wouldn't say I get dizzy very often or anything.

Is there also anything by experience you guys can tell me to DO or DON'T regarding this condition. Anything from diet (like working out at the gym) or anything in particular I should or shouldn't be doing in my life to either aggravate or help my tumour.

I've been told I have to go back in 6 months with the 'wait and see' approach. If it's grown enough for concern, I'll need surgery. I'm absolutely petrified!


Nice to finally find a forum dedicated to A.N's!


Many thanks,

Mark, 24
Manchester, UK

[ppearl214]

Hi Mark and welcome.

Well, I had to ask my husband (my bloke) about Alton Towers and gave me the lowdown. He's from the Darlington area but family now down in Dorset (Shaftesbury). With the kinds of rides there, you may have some dizziness issues at high heights or rides that may throw off your equilibrium but shouldn't be bad.  Try to have a good time and enjoy for me!

Please tell us about more about your AN.  It's size... it's location... where/what drs you have met?

I honestly don't have answers as to the "do's and don'ts" but.. I can tell you its bengn... and its treatable.  Many note balance issues, hearing loss, tinnitus, as you have noted.  You will know if dizziness or such come into play and how your body will react. 

There are many forums here that touch base on things you note. Please take a look around.... and ask away!

Again, welcome!
Phyl (1/2 Yorkie but born/raised in Boston, MA)

[shameless_stud]

Hi there,

Thanks for your response and re-assurance. It helps to talk to people about it I suppose!

Apparently the tumour is a small one, it's 1cm (well was 3 months ago) and the location - technically I'm not sure apart from the obvious acoustic nerve (lol) and it's on my left side. Thanks for your advice on the roller-coasters too, I know it looks like a silly question but I didn't want to suddenly die on a ride or make it pop or anything lol! I'm only 24 which makes the whole thing even worse, like my life feels like its over before it's started.

I'm still grateful that it's benign (hopefully) and that it has been detected an monitored.

How are you getting on with your AN mate?

Mark x

[grega]

Hi Mark,

I also wondered about riding coasters after I was diagnosed in May '04, but decided not to let it bother me.  So I just kept riding thru that summer.  The next summer, I was back to my old self riding again.  The operation for my 1.5 cm AN left me SSD on the right, so it helps me to ride in the left seat where I don't hear my neighbor's screams as much .....  

Unless you are experiencing great balance issues, I would continue enjoying as much as you can.  I don't think the AN will burst, as I've never read or heard of that happening.  So you can relax on that issue.

Keep  -ing ..... and ride one for me!

Greg

[ppearl214]

Mark

It really does help to speak to others that "walk in our shoes" as no one knows better than us and what we go through. I've been on this site for 4+ years and I've seen every question imaginable.  Your question ranks up there as being important... we have had many discussions here about flying and such... so, it's here.....

I'm doing ok. Like you, my AN is 1cm but since my treatment (radiation) which was done over 3 yrs ago, it has shrunk a little and stopped doing nasty to me.  For me, my drs deemed me a 'done deal', so I'm moving along in life but am still here (as an AN'er/patient and as a Moderator) to help those along since there were so many here for me when I needed it most (like you, newly diagnosed).

I do find I'm still having issues flying (flew to the UK over last Christmas/New Year's holidays) with ear pressure... yet, I know of AN patients that don't have the issue. I've learned, for me, to just deal with it as best as I can.  I still have some balance issues and such, but overall, from an AN standpoint, I'm doing fine. I have met (face to face) many folks on this website and they will tell you other than my nose being far too large, I'm doing fine. I married my bloke 6 mos after my AN radiation, he has since moved here to the States and life is moving along for me.  

You will see here that there are folks that have a difficult time... and some that don't. I'm not going to sugar coat anything as that is not our way around here.... but, you will see good and not so good.  You have terrific treatment options in London and Sheffield (and some other great UK locations as well) and since its only 1cm, you have plenty of time to research.

Glad to have you here.  Keep looking around.... if the info gets overwhelming, step back from it all if need be.

We're here to help.

I know of many other folks from the UK that participate here. I'm sure they'll be along (granted, its getting late there now).

Cheers!
Phyl

[shameless_stud]

Thanks for your replies you two, I really appreciate it. Probably will post every now and then so be good to catch up with you soon. I'm sure I'll be back online soon anyway with questions like, "Will eating carrots make my tumour grow twice as fast?" or something as pathetic as that anyway haha!

As per the roller-coasters, think I'm gonna go for it. Providing I feel fine after it, I hope that nothing more sinister happens!

Thanks again,
Mark x

[Jim Scott]

Hi, Mark ~

Allow me to extend my welcome and regret that you've received a diagnosis of an acoustic neuroma.  For the optimist, the good news is that this tumor is small, almost always benign and can be removed or irradiated.  Acoustic neuromas are generally found in people twice your age so your questions are relevant, especially when considering your age (24).   

I'm not a physician and I could be mistaken but I doubt that there is little you can do (or not do) that will effect your relatively small AN.  It resides deep inside your skull and is not affected much by external forces, including amusement park rides.  I don't see how exercise would make much difference, either.  To the best of my knowledge, lifting weights or jogging won't affect a small tumor inside your skull. It is not an aneurysm, which can burst, often with life-threatening results.  The AN is fibrous and usually has to be 'peeled' off of the sheathing of the nerve.  It can't be dislodged by your activity.  Flying can be a problem (as Phyl mentioned) for some but it shouldn't have much effect on the tumor one way or the other.  That's more of a comfort/convenience issue for you. 

At 1 cm, radiation (as a treatment for your AN) remains a distinct possibility in your case but you'll need to consult with doctors that perform that procedure, which is non-invasive (no cutting).  Surgeons are often either disinterested in radiation treatment, uninformed about it's benefits and risks or simply won't consider it.  You'll have to be your own advocate if you want the broadest range of options and medically sound advice.  We can offer suggestions, but we're not doctors and can't make decisions for anyone.  We do want to help in practical ways, though.  That's what this website and especially, the forums, are all about.  We inform, suggest and mostly, support other AN patients to the best of our collective ability.

It may encourage you to know that I underwent AN surgery, then irradiation - and came through it all just fine.  I was almost 40 years older than you are now, when that occurred.  The thought of AN surgery is definitely daunting but it isn't quite as scary as we usually think it is.  Many have endured it.  As Phyl mentioned, it's a minefield, fraught with risks.  Some AN surgical patients do very well, some do 'O.K.', some not so good at all.  There is no simple answer.  We try to offer the best information available or, more likely, point you to it.  You need to be animated to find the best path to follow in dealing with your AN so please don't become petrified. 

Thanks for posting and of course, my best wishes and prayers for you as you begin your 'AN Journey'. 

Jim

[shameless_stud]

Hi Jim,

Many thanks for your reply. I know you're not a medical professional but your outlook and evaluation does make complete sense. The only other major concern I have is the amount of CT or MRI scans i'll be having for the rest of my life can't be good for my body. I've read somewhere that this can actually CAUSE cancer in later life due to the radiation. It's like a double edge sword, I can't win! I suppose modern technology is enabling the medical team to see and monitor the tumour without it being invasive which is something I'm grateful for. I can't imagine that dye stuff they pump into me when I have scans being any good for my system over time either!!??

I consider myself to be a fit and healthy kind of guy, everything in moderation so it's upsetting that this effectively makes me 'ill' or suffering' with a brain tumor. Truth is, it's there an apart from the obvious ear noise I wouldn't of known it was there so I feel guilty too for not being 'more upset' that I have a brain tumor.

The other thing that annoys me is that fact that it's referred to as a brain tumor. It's not a tumor on the brain, it's on the nerve that connects the ear to the brain - would sound better if it was referred to as this, sounds less deadly! haha!

I was told by the hospital that radiation treatment wasn't recommended in someone as young as me due to it's links with cancer in later life too.


Thanks again Jim.


Mark

[Keri]

Hi Mark,
Since you're active I'd remain staying that way right up to surgery or radiation treatment. I think that helps the balance adjust. I like to run half marathons and an occassional marathon. I was afraid if I ran too far my head my explode or something! I was able to get back into slow running a few weeks after surgery (well, I'm slow anyway) and have since done a couple of half marathons. I've signed up for a marathon this fall; by then I'll be 10 months post op.

I'm a musician so I was more bummed about losing the hearing, but that's just something I've adjusted too fairly well. I'm planning to get a BAHA maybe around my one year surgery anniversary.

There's many recent success stories here lately. Many stories are in AN community or post op. The recent posties here have all dealt with their AN's with humor and good attitudes. Some have had more struggles and receive a lot of help, support and prayers here. Anyway, this is a great place to receive support and ask even seemingly 'silly' questions (I've asked many myself)!

Enjoy your roller coaster rides (gee, that's so symbolic too!)

Keri

[Kaybo]

Hi Mark!
I went to Disney Land just a few months before they found my tumor and mine was REALLY large so I think that would be even worse than a little one and watch and wait.  I rode everything over and over, and then over and over again and nothing happened to me!!  

Have fun!

K

[Vivian B.]

Hi Mark,

Welcome to the forum. You have come to the right place. Here you will get all the support you need and hopefully some of your questions answerec. When I saw my surgeons, neither said anything to me about dos or don'ts so I don't think anything in particular should be avoided. I lost some balance nerve so I was told to be careful driving and walk away from walls. The rides may make you a little dizzy as it's a normal effect anyway specially if you have an AN but enjoy yourself and have fun.

Vivian

[Mickey]

Hi Mark! Your a young man with alot of decisions to make. Fortunately your AN is small and you probably have a  time to do so. Do all the investigating you can and try to come up with whats best for you. Nowadays technology offers very good outcome for those who seek and get the best treatment. I`m alot older than you (61) and W+W. All I can say is I actually picked up my activities and changed my lifestyle healthwise and do pratically anything with no ill effects. Everythig going to be fine. Prayers and best wishes, Mickey

[mk]

Hello and welcome,

you have already received lots of good input. I just wanted to clarify the issue of MRIs and CTs and long term effects. It is true that CT scans deliver a very high dose of radiation. However this is not true with MRIs, which rely on a magnetic field. I have never seen any mention of MRIs having potentially any risks - the closer you can get to something that might pose a risk is the gandolinium injection that is used to provide contrast.

On the other issue of what to do or not to do, many of us had our ANs for years without even knowing it and without experiencing any symptoms. I gave birth twice, flew overseas many times etc, without ever feeling anything. ON the contrary others, have severe symptoms, even with very small ANs. So basically do whatever your body tells you. I am not aware of any restrictions that are specific to our condition or anything that you can do to make things worse (or better).

Marianna

[stoneaxe]

Wow Mark!...I wish I had picked that handle. With a name like that I'd think roller coasters would be the least of your worries....

In answer to your question about physical activities causing problems....I think quite the contrary. If you ever do develop balance problems you might try what I do....

http://www.youtube.com/v/MOmZung9fv4&hl

[leapyrtwins]

Mark -

I can relate to your feelings about being diagnosed with an AN, but I wouldn't say I was "devastated".  Shocked, yes; frightened, absolutely; stunned, you betcha!  After all that I went "what IS an acoustic neuroma??" 

Anyway, as others have said, there really are no dos or don'ts - having an AN shouldn't stop you from living your life.  AN treatment shouldn't stop you from living your life either.

You mention AN's being benign "hopefully".  I just want to assure you that the odds are definitely in your favor - 99.9% of ANs are benign.

Jan