Newly Diagnosed

[sues1953]

Hi !  My name is Susan I am so excited to find this website I can't believe it took me so long.  I was diagnosed with a 3.5cm AN last month.  My Dr. told me my only option is surgery and my hearing will be lost in my right ear.  I am scared to death after reading of all the post op side effects, and the surgery as well.  The Dr. told me the surgery would be about 8 hours long and I would be in hospital about a week.  I have minimal symptoms, especially for having such a large tumor.  I would appreciate any input I can get.  I am scheduled for surgery on March 15th but am unsure being this is the only opinion I have gotton so far. 

[lawmama]

Hi Susan,

I am so sorry to hear about your diagnosis.  I understand how scary and overwhelming it is.  The first thing you need to understand is that an AN is a very treatable type of tumor, so that is actually good news!  Of course, nobody wants to hear that they will have to undergo surgery or deal with scary potential complications like single sided deafness.  Still, I think you will hear from all of us on this board that your life WILL go on and you WILL be ok. 

I think you will get a lot of good information from this board, and maybe ideas for  how to find other information that you might want to access.  I found the support and information here very comforting as I went through my own journey.  I had my AN surgically removed just 4 weeks ago.  Do remember that this is a message board, so different posters come on at different times.  You might not get a response within an hour or two, but I guarantee within a day or two you will get some responses if you need to talk.

You didn't mention who your doctor was.  One good thing about this diagnosis is that it isn't an emergency, so you have time to get second opinions if you wish.  Because these tumors are somewhat rare, I would encourage you to do research on your doctor and ask a LOT of questions (including how often he/she does this procedure).  WHO performs your surgery is critically important.  Different doctors are experienced in different procedures and have different levels of expertise.   

I don't know a lot about radiation, so I will allow other posters who do know more about it to comment about whether or not that would traditionally be an option for you.

You have found a board with a lot of people who have been through what you are going through now and want to be there for you.  I hope we hear back from you soon.

Lyn

[leapyrtwins]

Susan -

with an AN of your size (3.5 cm is considered to be medium moving towards large) surgery is generally your only reasonable option.  Radiation usually isn't done on ANs larger than 3 cms - and watch & wait isn't a very good good idea unless your AN is smaller.   Although you say you aren't experiencing big symptoms, over time you will and you may not want to wait for that to happen.

My AN was almost 3 cms when it was removed and it took my doctors 7 1/2 hours - so the time estimate of 8 hours for your surgery is correct.

The average recovery time for someone who has AN surgery is 6 weeks, but that can vary by the individual and the side-effects they encounter.  The average hospital stay is 4 - 7 days.

So, in a nutshell, your doctor has not steered you wrong.  He has given you very good information.

Losing your hearing in one ear (becoming SSD) isn't the worst thing in the world.  Some people adjust to it and just go on with life; others opt for assistance of some type - conventional hearing aids or BAHAs.  I have a BAHA and at this point in time, my SSD is just a minor issue for me.  Outside of being SSD, I have no other side-effects from my surgery.

As long as your doctor has the experience in treating ANs - and the qualifications to do so - you really don't need to seek more opinions - unless of course you feel you should.  I only went to one doctor (a neurotologist) before making my treatment decision, but that was my choice.  He treats ANs with surgery and radiation - so he was able to educate me on both procedures - and I felt comfortable with him.  In my case, I had no reason to look further.   Others seek numerous opinions because that is their preference.  Do what is right for you.

I highly recommend contacting the ANA for their informational literature - it's very helpful and will explain a lot of things to you in layman's terms.

Although ANs - and AN surgery - can be scary, there is life after an AN.  

Please feel free to ask us anything; that's what we're here for.

Best,

Jan

[epc1970]

Hi Susan
 Welocome! I had at 3.8 cm AN, like you I had minmal  presurgical symptoms. I was told my tumor had already shifted my brainstem. My only option was surgery but I realized quickly I had complete control over who whoukd do that surgery!   I retained my presurgery level of hearing after surgery. And yes recovery was tough but I had very few of the scary possible outcomes. Today, aside from headaches which are pretty much under control, I am doing great. My best advice to you is to make sure that whoever you pick as your surgeon has extensive AN expirence. My surgery was 8 hours long and I was released from the hospital 2 days later. My point being, is that the info you get is about all of the possibilities not necessarily what the outcome will be. I consullted with 3 different surgeons before choosing the one that I did so take your time in choosing yours. I wish you the best of luck Susan. Please keep us posted on how you are doing

[wendysig]

Hi Susan

First, I wanted to welcome you to our group -- in my opinion, a wonderful source of information and understanding.  Getting the AN diagnosis is  a frightening thing, but you will get through this.  Unfortunately as size goes, 3.5 cm does limit your options.  Although the possible side effects of surgery are scary, everyone's outcome is different and depend on the location of their AN and how sticky it is.  My AN was not sticky (which I count myself very lucky for) and although I ended up being SSD, and have a minor balance problem I came through surgery pretty much unscathed.  There is life after AN surgery and it is good.

Wendy

[ombrerose4]

Hi Susan,

Welcome to this wonderful forum. I am three and a half months post op, and doing well. My tumor was alittle smaller than yours, but was also pushing against the brainstem. I was advised that surgery was my best option. I went with the first neurosurgeon and neurotologist I met with because 'I' felt comfortable with them. They answered all my questions and told me about all the possible outcomes and how they could be managed. It is most important that you have confidence in your doctors and that they are readily availlable to answer questions that pop up before and after surgery. My surgery was eight hours, alittle longer than they expected because the part of the tumor by the inner auditory canal was sticky and they had to go slowly. They got it all out, no facial paralysis, but I did lose my hearing on that side. I just had surgery last week for my BAHA abutment, which in three months will ,through bone conduction, allow my brain to make me think I can hear on my SSD ear.  We all go through many individual ups and downs before and post surgery-everyone is different and has different results. Just remember that you have found an amazing place to get information, to vent, to get support and some laughs- this forum has helped me and many others through the bad days. We all care and are here for you.

[Jim Scott]

Hello - and welcome, Susan ~

Of course the initial AN diagnosis is intimidating and scary thoughts often take hold of us for a time but research and self-education about what you have and what you will do is the best disinfectant for removing bad ideas about your future.  There is a huge amount of information available on the internet; a Goggle search turns up 262,000 links with 'acoustic neuroma' in their title.   

If it's any comfort, I was diagnosed with a large (4.5 cm) acoustic neuroma in June, 2006.  I was 63 yeaqrs old and in relatively good health.  The tumor was pressing hard on my brain stem and my symptoms (SSD, dizziness, loss of taste, intermittent stabbing pains at the AN site) were becoming debilitating.  After looking at my MRI scan and putting me through a few rudimentary balance exercises (that I failed, miserably) The AN-experienced neurosurgeon I chose (30+ years performing AN removals) scheduled me for surgery a week later .  Unexpected issues delayed the debulking surgery for another two weeks.  However, the 9-hour surgery went very well.  The tumor was cut down, it's blood supply removed and I had no post-op complications.  My symptoms disappeared and I was out of the hospital within a few (5) days.  My recovery was rapid and basically uneventful.  I returned to driving within 2 weeks of my surgery and within a month things were back to normal.  Of course, I was retired so I didn't have work issues to deal with (few are so fortunate) and my only child was an independent adult.  My wife was a rock of support and factored into my quick recovery, walking with me (for miles) as I struggled (successfully) to regain my balance and generally, to get back in some kind of shape.  Three months later, I underwent planned radiation treatments (FSR) to destroy the remaining tumor's DNA and effectively kill it.  They were tedious but I suffered no side-effects and within 5 weeks, I was finished.  Subsequent MRI scans have indicated tumor necrosis (cell death) and some shrinkage.  My life is pretty much the same as it was.  I do have a total loss of hearing in my left ear but I manage to cope with this in a way that is satisfactory to me.  I also carry a few very minor 'reminders' of the experience but nothing that affects my quality of life.  None of this is an anomaly.  Many AN patients have similar experiences.  Often, post-op problems are temporary.  I experienced 'double vision' for 3 days, post-op.  By the time I was discharged, it had disappeared.  This is fairly typical. 

Whatever you choose to do, I hope you'll do so with as much factual information as possible.  AN surgery can be challenging but it is not the end of the world.  These forums are a great source for such inforamation and the folks that post messages here are eager to befriend you and offer their advice and support...that includes me.    Please consider us as a resource.  Thanks.

Jim

[Pembo]

Hello Susan...I sent you a private message. Welcome to our strange little world....

[pjb]

We all understand your fears but everyone is different and there are all types of side effects but you have to also read that there are a good number of success stories as well.  I just thought it best to get the AN out of my head and trust my excellent surgeons that were experienced in this type of tumor and of course prayed alot. Also alot of the side effects can be treated for some of us to have at least quality and quantity of life we should be thankful that they are not cancerous which helps to cope post-op.

Best Wishes,

Pat

[sues1953]

Thank you so much for all your imput.  I will keep you all posted.   Meanwhile I can't wait to get phone #'s for people in my area so I can and actually talk to someone. 

[Sue]

Hi Sues 1953,

Welcome and I'm sorry you had to find us!

Make sure your doctors are very well qualified.  Make sure they have done this more than twice a year.....50 times a year or more is better!  The more qualified and experienced your medical team is, the better off you will be.

Hang in there, kiddo!

Sue in Vancouver, USA