just diagnosed

[JD]

Hi folks, have had tinnitus and balance problems for the last couple of months, went to see a specialist and was sent for an MRI, got the results today, I have a 3.7cm x 3.3 cm AN on my left side. I'm 33, live in Ireland and frightened to death at the minute. Given the size of my AN i assume surgery is my only option. Waiting on an appointment to see a neurologist in Beaumont Hosp. in Dublin, I'm a little bit concerned about finding the right care in Ireland. Delighted to have found this place so quickly to share my fears and concerns and hopefully get some comfort 

[ppearl214]

Hi JD and welcome. Good to have you here.  I know of many folks from the UK that participate on the forums here that may be able to assist.

In most cases, AN's over 3cms are usually operated (vs radiation, although some treatment centers will radiate over 3cm.... the "standard" seems to be 3cm is the cut off point).  I know of many great facilities in England but will let the UK gang jump in to help with that one. (I live in the USA but husband is from the UK/England... in my time in England, have researched abit about AN treatment options in the UK).

You can find comfort here... as we all know too well what it is to wear your shoes. Please remember that the AN is benign.... its treatable... and we certainly can help calm nerves if we can.

Please hang in there.. and again, welcome.
Phyl

[cin605]

First let me give you a big warm Welcome!I am glad you found this site ,as you must have tons of questions and we have tons of answers since all of us has been in your shoes(so to speak)
I am not from Irland but i would imagine there is someone here that is n will give you some guidence.
I am from New Hampshire.I had an AN removed 1 1/2 years ago...seems like yesterday.
Feel free to PM me if u want to chat.
Cin

[epc1970]

Hi JD
Welcome! Like you I was diagnosed with a large tumor seemingly  out of nowhere when I was 37. Surgery was my only option as well. Take your time in finding the surgeon for you and prefferably who has extensive AN expirence. Good luck and keep us posted on how your journey goes!
Erin

[JD]

Thanks for the kind words and support guys, found out today at 3pm over the phone while I was at work, five hours on and it just sinking in. I have been reading some posts here and I'm a little shocked at the size of mine in comparison to some of the posters on here. Very bad knot in the pit of my stomach!
Just don't know what to do now, do I go into work, little point I'm thinking as I wont be able to focus on anything but the mass inside my head... this is horrible!!!!!!!!!!!!

[ppearl214]

JD.. .how about this... we have MANY here with AN's measuring over 4cm... and 5cm.. and the current record on the forums is 8 cm.  As you can see in Erin's post above this (in her signature line, her's was about same size as your's).  Your's is MOST certainly treatable... so, please please remind yourself that you will be fine.  You just found out... and at this point, info overload can very easily take over..... but know we are here to cheer you on. It's going to be ok.... truly.  We're here to help.

.. and if the time comes that its too overwhelming, take a step back... take a deep breath.. and then, continue to forge on.  We're here to help you along the way.

Phyl

[Joef]

Hey there JD ... I have you beat !!... mine was bigger..!!!

the first few weeks after finding out... are the worse... it does get better from here!

[moe]

Hi JD,
Welcome as we say to the club that no one wants to be a member of!
Great advice and insight from  Donnalynn and Phyl.
So I will just ditto them and reiterate that  time is on your side. No need to rush through hasty decision. If reading the forum posts starts to freak you out, just take a break and come back.

 I personally had to proceed with surgery due to the location of my tumor and I do have facial nerve issues, but this is NOT the norm. I'm doing well in all aspects of life.
The shock does wear off after couple days or weeks, depending on the person.
Things will be OK. You will find great comfort in all the support.
I've never been to Ireland but really want to go! My husband said maybe next year.....
  Maureen

[JD]

I'm really touched my the replies guys, thanks so much.  Think I'm gonna sleep on it and hopefully feel better about the world in the morning, just not in a good place right now. Really appreciate all you're support though, so happy I found this forum so quickly.
My symptoms are muffled/loss of hearing in my left side and slight balance issues. Funny thing is the audiograph I had done didn't show a massive amount of hearing loss in me left ear (I'm a competitive bugger though and didn't want the test to "beat me" so to speak). The specialist told me that based on the results of my audiograph he would not normally send a patient for an MRI, i guess it was my balance problems that convinced him. Glad he did, 3.7x3.3cm is a pretty big growth considering i have been coping pretty well with the symptoms.
Think I'll go to work and break the news privately to my manager, I assume Ill be off work for months... I really haven't a clue what I'm doing yet!!!!!!!

[JD]

Still haven't gone to bed (9:50pm irish time). Agonising over whether or not i should go to work tomorrow, think i need a day or two to deal with it and let the news sink in. Dint think I will be able to concentrate on anything anyway. On the flip side I am very busy at the minute!! 

[CHD63]

JD .....

Want to add my welcome to this forum.  You have already had excellent advice from several others.  Take a deep breath and try to relax.  You have time to consult with doctors.

I can still remember that numb feeling I had on hearing the diagnosis and seeing that big white blob on the MRI.  It helps to read and talk with any medical professionals you can find.  I would stress, as have others, that you want to find someone with extensive experience treating ANs to be your physician ..... cannot say this strongly enough.  You do not want to be a practice surgery!

Let us know how you are doing and ask all of the questions you may have.

Clarice

[Kiwi Don]

Hi JD,
Welcome to the forum, it's the place we would all rather not be at but the AN journey has lead us here.
Like you I am from outside the continental USA (NZ) and I was in the same state, what to do, who to tell, where to go, and how's it all going to end up. But after being here for month or so I have found that is definitely not all gloom and doom, it's just a speed bump on life's journey.
You will find over the next few weeks that you will be absorbing more info than you thought possible, but hey, take it in, take a break, and ask questions, the more you understand where you are at the easier the journey becomes. The folks here are a real friendly bunch and have great advise and knowledge and are more than willing to share their journeys.
Get a good nights rest and start the new day in a positive manner, it's what gets us all through this journey

All the Best

Don

[Jim Scott]

Hello and welcome, JD ~

I'm sorry to learn that you've been diagnosed with an acoustic neuroma but glad you found the ANA website and decided to post on the forum.  We're not doctors but collectively, our membership has a wealth of practical experience in dealing with an AN that they are eager to share with you, as you're quickly learning.  Your tumor is very likely too large to be safely irradiated but a physician will make that determination.  While brain surgery is not what anyone really wants to go through it isn't the end of the world, either.  Many of our members are running marathons (well, half marathons, anyway) within months of their surgery.  Others engage in equally strenuous physical activities.  Many have young children and/or jobs that they mange to take care of.  It isn't all 'gloom and doom' by a long shot.  

For what it's worth; I was 63 years old and diagnosed with a 4.5 cm AN in May, 2006.  I underwent a partial resection of the tumor - with almost no complications, then, 3 months later, 26 sessions of FSR (Fractionated Stereotactic Radiosurgery).  This was a carefully-planned attack on the large AN, intended to spare the facial nerve and, ultimately, destroy the tumor.  I can report that it was highly successful.  My experience is not necessarily an anomaly, by any means.  Granted, AN removal surgery has inherent risks but it is usually successful and very often, even those AN surgical patients that experience problems (facial paralysis and attendant issues) find those deficits to be temporary.  

As many will admonish, to secure the best odds of having a good surgical result, do the necessary research and definitely seek out a surgeon with copious  AN removal experience.  That is critical.  I'm sure some of our UK members will offer some suggestions on that.  Meanwhile, take a deep breath and remember that the tumor is not malignant and, as Phyl (ppearl214) stated - treatable.  I'll add that although acoustic neuromas are relatively rare, you're not alone in this battle.  Many are with you and will support you in every way we can.  That includes me.

Jim

[Jackie]

Hi JD,

May I also welcome you to our family. We are people from every walk of life, many different countries and many different ages, male and female. The great part about finding this forum is it contains a wealth of information and experience and  great people who all want to help you because we have been or are now where you are also! With this diagnosis usually comes the shock and realization that we have a tumor in our head! That's pretty shocking, BUT and it is a BIG BUT, they are almost always benign, so that's great news! Many ENT's say if you have to have a brain tumor, this is the type you want! So just understand it is NOT the end of the world or life, but a new direction for now. I was told to do all the research that I could so that I would understand exactly what I have and what can be done to treat it. You have already been give some valuable information but there is so much more to learn and once you have read up on Acoustic Neuroma's then you will be empowered to know what steps to take next. Sending Blessings to you from Oregon (USA), and please ask all the questions you want, as many have answers right here!

Jackie

[epc1970]

JD
Just wanted to say that  Jim and some of the others with larger AN's have said -they are very treatable even at larger sizes. I know it's a shock....like you I had very few symptoms (just a ringing in my ear) and the next thing I knew I had a whopper of a  brain tumor. I did a ton of research, found myself a good surgeon and today, I am doing better than I would have ever imagined possible given the size of my tumor. Take some time to allow this to sink in and find a surgeon you trust and who has extensive AN expirence and you will get thru this!
Erin