How can I cope?

[roey]

Hi all,

I'd like to introduce myself if I may.  My name is Mark and I am 28 years old.  I live in the UK, Nottinghamshire.  I have been having ringing in my right ear and occasionally my left since last early December.  I went to the doctors and he thought that I may be suffering from hay fever and proceeded to give me some tablets and a nasal spray.  This didn't work and so I went back and was told on several occasions that my ears looked fine.  I have also been experiencing the 'full' sensation in my right ear and severe Vertigo on and off.  I'd say with regards to hearing that my left ear is 100% and my right is 90%.  I've have other symptoms too and I'm not sure if they are linked to a potential AN but I have a really heavy feeling in the left hand side of my neck that I've had for 2 months and my left hand keeps going numb sometimes and I have more sore throats than I used too.  One thing I have had since my early teens is a whooshing sound mainly in my right ear and no one had ever been able to explain it.  It just comes and goes yet my sister says she has the same thing.

Anyway, I went back to the doctors last month and demanded that I have the matter further investigated.  ENT tested my hearing and said it was completely fine but because I was having symptoms predominantly on one side that I should have an MRI.  I've had an MRI without the dye and the results are that there is a 'slight' thickening on my nerve in my inner ear that 'may' suggest it's an AN.  I now have to have another MRI on the 21st July this time with dye to give them a better picture.  I've been told not to worry at all and in fact the consultant looked quite calm about the whole matter and told me not to Google AN. 

This all happened one week ago and my life has been a misery since.  I have two young children, 4 year old and 2 months and a lovely wife and I'm just wondering why me?  I went to my docs to see if they could help with the dizzy spells and they have given me some tablets which seem to be working.  The doc also explained the MRI results to me again and said if there is something there it looks like they have caught it early but he said then again it might be nothing.

I'm convinced it will be an AN.  I just haven't felt normal for a while now and I'm not very alert how I used to be and my memory is dreadful.  I'm absolutely terrified that I'll lose my hearing and have facial palsy.  I'll never get to hear my baby girl speak and I live for music.  I know it sounds silly but I'm a massive Beatles fan and the thought of never listening or playing music again would destroy my soul.  I recently started my new job as a web designer and I'm worried that's all going to end too.

From what I've read on the Internet, there just doesn't seem to be any hope as to saving the hearing.  It's like I'm going to have to sacrifice my hearing in order to remove it and a 'wait and watch' policy just isn't for me.

Most of all I can't stand to wait.  Hope someone can give me advice on how to deal with all of this.

Many thanks all,

Mark

[stevecms]

hi mark im also from the uk.try not to worry mate the good thing is the docs are on to it already.mine was undiscovered and got to 4cm before it was found.even if it is a an they will be able to zap the bugger without surgery.i know its a worry but they will sort it out for you.all the best,steve.

[roey]

Hi Steve,

Thanks for your kind words mate. I have moments where I feel ok and try to remain positive and then there's the moments where I just feel shocked.  I have been reading about potential treatment pathways and the gamma knife does look appealing and looks the best hope of saving my hearing too.  I can't believe I'm on here typing this as one minute you're living your life and the next........but I guess that is life.  I really hope it isn't a AN but if it is then it looks like they've caught it early.  My Grandad had a brain tumour that grew to half the size of his head, it was benign and involved a 15 hour operation, that was 15 years ago and he's still here but makes you wonder if what I'm going through is hereditary.

I'd be interested to know what symptoms you had prior to yours being discovered.  Plus, where are the best places to get treated in the UK?

Thanks again,

Mark

[Jim Scott]

Hi, Mark - and welcome ~

I'm so sorry to learn of your distress over the possibility of being diagnosed with an acoustic neuroma.  Frankly, your concerns are typical and so is the stress you're feeling.  I was much older than you (63) at the time of my diagnosis (of a 4.5 cm tumor) but had similar feelings of despair - for a few days.  I did a lot of research on the internet, using legitimate AN-related websites such as this one (the best, in my opinion).  From that research, I gained knowledge about what I had, the prognosis and what I could do about it.  In short, I educated myself.  Long story short: I was blessed to quickly find a compassionate, highly skilled neurosurgeon with many decades of experience removing ANs.  He acknowledged my concerns about post-op facial paralysis and presented me with a specific plan intended to minimize the chances of facial problems.  He 'de-bulked' my AN, essentially 'thinning it out' and severing it's blood supply.  I did not experience any facial problems, headaches or other issues.  I was released from hospital five days after being admitted.  My recovery was rapid and complete.  Then, in a pre-planned procedure, I underwent 26 FSR 'treatments' aimed at destroying the remaining tumor's DNA and rendering it unable to grow again.  Those sessions were uneventful with no adverse effects.  I drove myself to and from each one - a 60-mile round trip - for 5 weeks (weekends off).  Subsequent MRI scans showed necrosis (tumor cell death) and the beginnings of shrinkage.  My pre-surgery symptoms disappeared and today, five years later, I'm doing great. 

Unfortunately, my procrastination in seeking a doctor's help with my symptoms resulted in the loss of my unilateral hearing.  The good news is that, because the hearing loss was very gradual over a period of some years (before my AN diagnosis), I learned to cope quite well being SSD (Single Side Deaf).  I must emphasize that when we speak of 'losing hearing', we mean unilaterally - in one ear....the one affected by the AN.  Although this is a deficit and an impediment, it does not preclude enjoying music.  I was a radio 'disc jockey' for many years and, like you, have a love of music, especially the Beatles, one of the greatest 'pop' groups of all time, in my opinion.  I still enjoy listening to them along with other music.  I also enjoy The Beach Boys music.  It may interest you to know that Beach Boy founder and the genius behind many of the songs was Brian Wilson, who wrote and recorded those songs while deaf in one ear...just as I am.  Like me, he still is. But Wilson could hear, arrange and sing just fine, as the Beach Boys success demonstrates.  Being SSD obviously doesn't preclude hearing and talking to your children or enjoying the music you love.  I'm retired but a deacon in my church with specific responsibilities.  I drive daily and enjoy movies and television, just as I always did.  Life does not necessarily stop when you are SSD, it just changes a bit.  I use wireless earphones to watch TV so my wife doesn't have to endure the sound being at an obnoxious level for her. In meetings, I subtly position my body to keep my 'good' ear toward the speaker.  I'm quite good at it, too.  However, should you wish, there are BAHA (Bone Anchored Hearing Aids) available that can greatly help your hearing.  That is my 'plan B' should my SSD ever become a real problem for me, which it hasn't as yet.

I state all this to try and help encourage you, Mark.  Although the initial AN diagnosis is often devastating, it should not defeat you.  In fact, it only will if you allow it to.  I don't think you'll let that happen.  Thousands of folks have dealt with an acoustic neuroma, struggled with whatever happened and almost all of them came through the experience in good shape.  Yes, things may be a bit different but with some work on your part, you'll get your life back, I can assure you.  However, it'll be up to you to maintain the determination and patience to get through this.  I won't pander to you by stating that "it could be worse".  If this is what you have, it is 'the worst' for you, now, no matter what others may have to deal with.  I can only point to my successful experience with an acoustic neuroma diagnosis and that of many others who will follow this post to try and remain positive and to please keep us updated on your diagnosis.  Thanks.

Jim

[mattsmum]

wise words from jim (as always) - hang in there and take some hope from his story.
if your mri does confirm an AN it is unlikely to be large from what you have been told so far, so if watch and wait does not suit radiosurgery may be the way forward, and would gave about a 75% chance of preserving your hearing.
radiosurgery is done using linac in qe birmingham, and gk in sheffield that i know of in mid - north england. i had linac at qe b'ham almost a year ago.
unfortunately i am in the 25% and have lost a lot of hearing since, but i get some benefit from a hearing aid. and as jim says SSD does not stop you enjoying music. i sing in a choir - and although i need to pay more attention to our conductor to keep time as i can only hear myself when i am singing - i can sing just as well as before.
anyway - i don't want to jump the gun as you have not had the diagnosis confirmed yet - but do hang in there and if you do find you are a member of this exclusive club, there will be lots more useful info and support available here.

best wishes,

vikki (uk)

[Sue]

Hi Mark,

Pay heed to Jim's post as he is one of our wise elders on here.  It about breaks my heart when I read posts such as yours because I (as can everyone on here, hence a "support group") have gone through that too...although I believe your fears are greater than mine were.    If you want, you can read through my AN story, link at the bottom of this post. 

Let me explain one thing for you....in the world of brain/skull based tumors,  Acoustic Neuroma is not very exciting to neurosurgeons.   Maybe that isn't the right word, but it's not cancer and it is very treatable and doctors tend to not think that this is that big of a deal...in their own neurological world. We, however, tend to think of this as a Big Deal, and rightly so.  They think..hearing loss in one ear is a good trade off for getting that thing out of there, so quit your whining and let's get on with it. Or at least that's what I think they must think! LOL   On this side of the fence, it's kind of a difficult reality to face.  Even though this changes our hearing, there have been many people on here who are very involved with the music world who have gone on with their lives, despite an AN.  As Jim said, adjustments are made.   

Interestingly, in my list of things I wish could be "fixed" on me, hearing comes in third.  Number one and number two trade back and forth, depending on the day and the level of annoyance..tinnitus and facial numbness.  My trigeminal nerve got tangled up into the mix, so I have half my face that has varying levels of numbness, and it can be disconcerting at times.   

The only time I really miss the hearing in my left ear is in the car, actually.   We have a newer car that has a nice Bose speaker system...and I can't enjoy that fully...  The car magnifies the fact that all sound comes into my right ear.  But, I'd rather have that than nothing...

And the Why ME question.  All of us have said that!  Why me?  What did I do to deserve this?  Cell phone use, living in a bad place, hereditary, something I ate, did I fall and hit my head, WHAT DID I DO?  The simple answer is this ( in my opinion, as a semi wise elder). --  you didn't do anything wrong.  You, along with the rest of us, just happened to be one of the people whose schwann cells got a little carried away and made a tumor on your hearing/ balance nerve.  It's just one of those things.  And the only way you get passed that is to understand that it could have been MS, or Parkinson's, or ALS, or any number of other diseases that would have left you and me in much more dire circumstance.  And having said that, even though it could have been worse...this is the worst thing that has happened to most of us, including you, so it's also okay to get mad!  You will go through the five stages of grief (google that!), and you will, in time, come to acceptance.  I have, although I revisit Mad as Hell, every so often.  Not as much as it used to be.  Time heals, you know

I wish you all the best in your eventual treatment and healing.  Can you feel that?  I just gave you a big hug.  I am feeling very protective motherly at the moment!! 

Sue in Vancouver, WA, USA

[Chances3]

Hi Roey,

I had my AN surgically removed using the Middle Fossa approach.  The approach is above the ear, but does require that
the brain is retracted.  The brain stays inside the dura mater which is the protective cover.  My AN was not very large, and it sounds like you might have a small one as well.  I choose this approach because I felt it had the best odds for hearing preservation and facial preservation.  I have lost some hearing, but no changes to my facial muscles.  If you do have an AN, and I hope and pray you don't, learn as much as you can about all the options.  If you chose surgery, find the best doctors for this procedure, even if you have to travel very far.  Don't be afraid to ask for help in finding the very best care from other members on this site.

Here is the good news, you are young ( I had mine removed at 55 ), and you will bounce back nicely.  Stay positive, and most of all, never ever quit - be prepared to fight everyday.

God Bless.

[roey]

Wow.....I'm absolutely stunned at the support on here.  You guys are great and I truly mean that.  It really does help to know that other people have gone through what I'm going through and how you've all pulled through so well.  I really am praying that it isn't a AN but I can't see it being anything else although I've read that Meniere's disease closely mimics AN.  In a way I'm glad they have found 'something' because I don't want to feel like this anymore.

I was having a long conversation with my sister this morning about my symptoms and she said she was experiencing the same thing, especially the ringing, vertigo and whooshing noise in her right ear.  She is 24 years old and I was just thinking to myself is it possible that we both have an AN that is the hereditary type?  Her 5 year old son is having issues with his hearing and my 3 year old son does complain about ear pain from time to time.  Maybe I'm just going AN crazy but something odd does seem to be happening with a pattern developing.  Looking back, my father suffers from terrible tinnitus, which he blames the coal mining for and he also suffers from terrible vertigo.  To my knowledge he has never had his symptoms checked so although it's very unlikely its an AN due to how rare it is, there is still of course the chance that it may be.

I've got two more weeks to wait before I have my second scan, this time with dye.  Is the dye injected into your neck?  I have my consultation on August 10th but I'll leave it a week after my scan and then phone the hospital for the results.  I'm due to be going on holiday for one week the day after my scan but I will struggle to relax. 

Current symptoms at the minute is that my balance is off from time to time, my vision flickers sometimes and I have some ringing on and off.  Currently on some tablets that treat Meniere's and they do seem to be helping a little.  I've not gone to work all week as I just don't feel well enough, which is a shame because prior to this week I haven't had any time off in 3 months since I started.

One thing I have discovered is that the BAHA is based literally 10 minutes away from me: http://www.bana-uk.com/

Is it worth me giving them a call to discuss things?

I will certainly keep you all posted on how I get on.  I just want to take this opportunity to thank you all, once again, for your kind and positive words.

Mark

[CHD63]

Hi Mark .....

Adding my welcome to this forum of caring, supportive, new friends.

You have already had great answers from others so I will not repeat.

A couple of answers:  in the US and I would presume in the UK, the dye is injected through an IV line that is put in place (in your arm) before the scan begins.  On all of my MRIs, the first 20 minutes or so were without contrast, pulled me out of the tube to put the dye in the IV line already in place, put back in tube for second 20 minutes or so of scanning.

Secondly, I think you meant BANA, which is the British Acoustic Neuroma Association, not BAHA, which many of us on here know as bone anchored hearing assist.  ..... and yes, I think you should pursue any and all information you can regarding acoustic neuromas.  I do not know anything about BANA, as such, but at the very least it should be able to guide you into treatment options/places in the UK.

Many thoughts and prayers.

Clarice

[skipg]

Hi Mark,
I am in the Watch and Wait Brigade. I was officially diagnosed Jan 3, 2011 (Happy New Year). Thanks to the internet I knew what I was dealing with before I got the "official" news from the neurosurgeon. Sometimes too much information can be overwhelming, especially at a young age. In my case, in Nov 2010 after numerous symptoms and a visit to an ENT and a trip for an MRI, I pretty much knew what I was dealing with and it felt like someone punched me in the stomach. I literally felt like I wanted to throw up. The ANA, which I joined, and this forum helped me tremendously. I lurked in the background for 6 mos before coming out of hiding and joining in. I was in denial for several months but now me and my friend are tolerating each other. I am still researching and looking at all my options and continue to educate myself. You will be fine. Take time off from this AN stuff and enjoy your family, go on a date, have some fun and then come back and address your AN. Take control of the situation and do not let it control you. Find a fellow ANer to talk you through this. You have a long fulfilling life ahead of you and will be an asset to others that will go through what you are dealing with. Remember we are here for you, Keep us updated. God Bless
Skip

[Kaybo]

Welcome Mark!

I can't add much to what my friends above have stated except that, even though I am not "trained" in music, I sure enjoy it...A LOT!!!  I have been deaf in one ear for 15 years now - my AN was removed when i was 25.  Also, I went on to have 3 babies after that and am VERY involved in their activities and lives - didn't stop me at all!!  It is a scary thing - & it is OK to be scared, but it can be "gotten thru" too!!

K   

[GM]

Mark,

We all know the stress of becoming part of the AN group, and you have landed in the right spot for support and a kind ear.

Please remember that the human body is AMAZING in what it can do to compensate for other parts of our body...please do not give up on your hope of music.

Having a AN does not necessarily mean the end to your music...Lori Brown (see ANA support groups by state...Virginia) is a music teacher and she had surgery and lost total hearing in one ear...she still teaches music.  I go to this support group. 

Hang in there....Gary

[leapyrtwins]

BAHAs are fabulous!  I've had mine for a little over 3 years and absolutely love it.

Here is a few websites you might find helpful:

http://www.baha-users-support.com/cgi-bin/2bb/2bb.cgi

www.cochlearcommunity.com

Registering as a member on either site is free.

Best,

Jan

[roey]

Hi all,

Been feeling much better these last couple of days.  Made a decision to get on with my life and fight this thing every step of the way.  Might even join up at the gym again as I feel this will help me even more.  Role on 21st July.   

Thanks to everyone for their support.

Mark

[skipg]

Good job in taking control. For me on the Watch and Wait program, diet and excercise is very important. 
Thanks for updating
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