Just diagnosed with a small AN - help!

[jays]

This is my first time posting anything like this, but I really need some advice from those of you have ‘been there – done that’.

I was diagnosed with a small AN on April 22.  A few months I went in for a routine physical since I had not had one in about 7 or 8 years.  (I am 31 now)  I did not really have any symptoms that I was really aware of. (looking back I know I had symptoms but just ignored them)  I am in very good shape, eat right, and am typically in the gym several days a week.  My doctor was basically just going through the motions asking questions expecting to give me a clean bill of health.  When he asked about my hearing, I said – “well now that you mention it, I do notice a hearing difference when I’m in bed and laying on one side version the other.â€?  This had been going for 2 or 3 years, and I would have slight vertigo from time to time, but I just didn’t pay any attention to it.  There were (still are) days when if feels like my ear is completely stuffed with cotton, but this would go away after a few days.  Again, I though maybe I was getting a head cold, or had a mild ear infection – nothing that I would have seen a doctor for.

My doctor referred me to an audiologist for hearing exam.  The audiologist confirmed there was a fairly significant hearing loss in my left ear.  Not sure how I didn’t realize it…?   The audiologist then referred me to an ENT.   

The ENT asked a lot of questions, but only briefly looked in my ears.  I was thinking to myself – big waste of time and money.  Then he said I needed a MRI because what I was describing could indicate a tumor.  I was a more than surprised, but really mostly irritated because why would I have a tumor?  I had been healthy all my life; never had any surgery, or even an IV for that matter.  I was able to get a MRI that same day, which I found basically relaxing.  Later that evening I joked about the ordeal with some of my friend  - what a crazy waste of time.   

The next day the ENT called me himself and confirmed I had a small AN.  Which put me into shock!  He has referred me to the University of Minnesota.  I will be seeing Neurosurgeon Dr. Tummala & Neurotolgist Dr. Huang tomorrow - 05/07.

I am still doing a copious amount of research, but I am still confused.  I hope that tomorrow after I meet my doctors I will have a better since of my treatment options.

Does anyone have any suggestions about how I should handle my very small AN?  I’m not sure if I can take the wait and see approach.  It seems like radiosurgery would work well for me, but the middle fossa surgical option is also intended for small tumors.  I am really concerned about keeping my hearing intact, and really not too excited for a surgical procedure based on the complications; the chance that radiosurgery won’t necessarly stop the growth is upsetting.  I understand the treatment option is solely mine, but would appreciate any advice. 

Thanks!

 

[Sue]

Hi Jays,

Sorry you are joining our little group.  You will find that this is a great place for information, inspiration, and comfort.  Lots of good people on here and lots of knowledgeable people, too.  Most of us can only speak about our own experience and the knowledge we have learned over the months and years that we have had our very own AN's.   As you have already said, you do have a small AN, so you have choices.  You can wait and check it in 6 months or a year and see if it has grown or you could tackle it now.  I would suppose it would depend on how small it is.  If it is very little, the doctors might want to wait awhile. And this depends on the location too.  My only advice is to get a balanced overview of all of your options.  Surgeons because of their training like to do surgery.  They might not talk so favorably about your radiation choices.  And, of course, doctors who prefer to use radiation might not be encouraging you to do the surgery.  So....it can be rather hard to come to a decision when the medical profession is in conflict about methods.  It's one of the hardest things about being handed this diagnosis, for the people who do have smaller AN's.  Large nasty ones have no option...rip 'em out of there!  But many people just kind of go with their "gut" feelings about what they want to do.  Or sometimes just talking with the doctor  puts them at ease and they are comfortable with him/her and the doctor's recommendation and then you just go with that.  There just are no hard and fast rules here.  We wish there were.  It certainly would be a lot easier! 

I wish you the best with your decision and welcome you to the Forum.  Let us know what the doctors had to say. 

Sue in Vancouver, USA

[leapyrtwins]

Jay -

as you say an AN your size usually gives you the option of radiation or surgery.  My AN wasn't as small as yours is, but I was given both options also.

I had the same symptoms you did - diminished hearing and a feeling of fullness in my AN ear.

Although I chose surgery and am very happy with my results (basically the only permanent side-effect I have is SSD - single sided deafness) , unless you have a strong desire just to have the tumor removed from your head, you should give serious consider to radiation. 

That is just my personal opinion - and I'm not a doctor or even close to being a doctor.  And, as we like to stress here on the forum, treatment decisions are a very personal choice and you need to do what is best for you.

Educate yourself (the ANA has some wonderful brochures, free for the asking, that are full of great information), weigh the pros and cons of each option, talk to doctors who are very experienced in each procedure, and then make your decision.

I am one of those, that Sue mentioned, who went with my gut.  I only consulted with one neurotologist and I just knew that he and the neurosurgeon he works with were the right guys for me.  I also knew once I made my treatment decision that it was the right one for me; I didn't second guess my decision at all.

We are here to answer any and all questions you have.  Don't be afraid to ask.

Good luck,

Jan

[CHD63]

Jay ....

As the others have said, you do have options with a small AN.  I would ditto their responses and add that all of the research you can do/find is  extremely helpful in making the best decision for you.  Personally I looked up everything I could find, emailed all of my medical friends and family for advice, and scheduled appointments with physicians specializing in all the choices I potentially had.  As it turned out for me, with my size of AN, it was borderline for radiation and I wanted to preserve my hearing if at all possible, so I chose surgery.  I am as pleased with the result as I could possibly be, given the size and location of the tumor.

The main thing is to be very watchful for any changes in your symptoms and alert your doctor(s) if any occur ..... especially increased hearing loss or increased vertigo, which can be very subtle sometimes.

Clarice

[stoneaxe]

Sorry you joined our little club Jay. Just remember that you have plenty of time to research and find the best docs and facility that will make you as comfortable as possible with your decision. This will be a turbulent time for you but understand that life after AN is can be every bit as good as before and in some ways even better. It's all about attitude.

Educate yourself....understand the possibilities as best as they can be understood. The statistics can be painful to dig through and the problem is that even then they don't tell what exactly will happen to YOU. Unfortunately the best thing that can be done is to load the dice in your favor...but you still need to roll them eventually. I think the hardest thing about this is that no doctor can tell you "if we do x then y will happen".

[RES]

Jay,

I was just diagnosed two weeks ago with a 1.9cm AN on my left side. I was also in shock. I've been in great shape my entire life (now 46). It's an unfortunate thing but on the other hand I'm also fortunate that it's not something much worse that cannot be cured. As stated below, you have several options with a small tumor. I decided to go with surgery because of the tumor size and and my age. I don't want the thing to come back and have to deal with it again. I'm scheduled to have my surgery on May 14th at the University of Iowa. I was very impressed with the Dr's there plus I'll always be a Hawkeye!

Good Luck Jay!

[EJTampa]

Hi Jay,
 
You've received a great deal of advice and information, all of it good.  We are all opinionated, of course, and we all feel pretty good about the choices we made.  I think it's safe that you will also eventually find a comfort zone and find some peace once you make your decision.
 
I do like to share my opinions, and the reasoning behind, so hear goes .
 
1)  Watch and Wait - I'm very muc against it for anyone under the age of about 60.  A lot of growth can occur in 10 to 20 years, and having to treat it at age 75 would not be a good thing.  The earlier you can treat it, the better.  Smaller tumors are "usually" easier to treat, with less post-op effects.
 
2)  Radiation - Only for older folks that may not be able to handle surgery.  Again, that's my opinion.  Many here have done wonderfully with radiation.  With radiation, you can have issues with swelling for up to 2 years after the treatment.  I am the type of person that needs to know the outcome right away.  Lost my hearing?  Yep, but I'm adapting.  Everything else is going great, and I don't have to worry about more swelling.  I will note, however, that I would NOT base the decision on regrowth alone.  Regrowth can happen with EITHER surgery or radiation.  In fact, I think tumor control rates are pretty equal.
 
3)  Surgery - It's out, it's done.  I went in with XYZ, came out with ABC.  You wake up the same day and the doctor says "We saved this, lost that, you're gonna be fine".  Plus, you get a really cool battle scar to show off to friends .
 
I wish there was a magic answer as to which course you should follow, but there's not.  I will say a prayer and hope it helps you in making your decision.
 
Ernie

[Migoi]

Jays,

   Glad you found this place, sorry that you had to find this place.

   To echo what many others are saying, your decisions have to be your decisions. I can relate to the difficulty you are having since my circumstances were very similiar. While I am willing to tell the path I took, please understand it is not in any way a recommendation or suggestion that you or anyone else take that same path.

   I've had tinnitus and hearing lose for quite a while. It happens, you adapt, overcome, and move on. In November and December of 2007 I had 3 episodes of short duration volume increase in my tinnitus..as in for 30 seconds to a minute it got so loud as to drown out all other sounds. After the 3 episode (yes, I'm sometimes slow to take hints) I figured a trip to the audiologist was due.

   Asymetrical hearing results got me referred to an ENT. Discussions with the ENT hammered out probably cause for the hearing loss asymetry but not the tinnitus goofiness. An MRI, just to rule out an extremely rare possibility of a tumor on the hearing nerve, which the long practicing ENT had only seen 2 of in his entire practice, was ordered. Seemed like a waste of good resources to me, but since it was promised to be painless, I agreed. End result was the discovery of a right side AN approx 8mm x 3mm and referral to another ENT that specialized in these types of things. This was all at Tripler Army Medical Center in Hawaii.

   After a week the ENT surgeon contacted me...that was one looooong week... we met and the whole thing was explained to me, including the 3 options. Then I went off to make "The Decision". I'm very left brained...I like statistics, I like standards and lines drawn that reveal options when you cross them. The wonderful world of AN's has lots of statistics..often conflicting and always presented with lots of "exceptions". There don't seem to be any well drawn lines as to which option, given a specific size/location of the growth, is the best option.

   Finding good info about best options was further complicated by my growth being so small compared to the size at discovery for a lot of other folks.

   I pretty much went with the epithany theory of decision making... gather as much information as possible, get it into my head...then just let is swirl around while not thinking about it. Finding information was pretty easy (especially so after finding ANA). Getting that info into my head, not that difficult either. Not thinking about this thing in my head..pretty much impossible. In the end, I didn't really make the decision...my brain made it for me.

    I went on a 3 day camp out with a bunch of friends on the President's Day long weekend. On Tuesday morning, upon settling in front of my computer for that first cup of coffee, I opened up my email program and had started typing out an email to my surgeon telling him I had decided to take the surgical route... As I typed the words I realized that I didn't remember actually making that decision. Upon a bit of reflection I realized that decision felt right...so I finished the email. The rational part of my brain presented it as ... it's not going to get smaller and you're not going to get younger.

    End result, on May 13, 2008 I underwent a middle fossa route removal. One oddity that we spent some time verifying is that my AN was on the side where I had better hearing. Post surgical results... a bit of hearing loss, but my right ear still has better audiogram numbers than my left, some balance issues (not thinking a career change to circus tightrope walker is in my future), and "bugginess" in my right side facial nerve (I have full mobility back but do have the occasional oddity with the functioning).

    One other oddity... mine turned out to not be a schwannoma but a meningioma (growth of the brain lining rather than on the actual nerve lining) but was placed such that it is considered an acoustic neuroma. The only difference is that apparently meningioma have a slightly less statistical probability of stopping growth than do schwannomas..make wait and watch a slightly statistically less good of an option (I warned you I liked things statistical).

  Again, the foregoing should not be construed as a suggestion or recommendation. You have to make the decision that you can live with. Good luck.

 
... take care... tim b

[sgerrard]

Hi Jays,

I will keep my reply short and sweet. Any of the three choices make sense for you. Radiation works well for small tumors with good control rates; there are several of us on the forum in that camp. Surgery works well on small tumors too, usually with less complications. Watch and wait is sensible if the symptoms are mild.

Welcome to the forum and the tempestuous world of ANs. 

Steve

[heyct]

Hi Jays,

Welcome to the forum. I also have a small nasty neuroma, but in my case is already affecting my facial nerve, thus, surgery is in 2 weeks. I only have occassional tinnitus & hearing loss. Everything else seems fine. Size does not matter! I personally would rather take care of the situation than waiting for more symptoms to occur.

Good luck with your research & follow your gut,
Carolyn

[Greengiant71]

Hi Jays..  and welcome.

I'm not going to go over the whole spiel but I will say that you have found the mother load when it comes to information and research from this forum.  I just had surgery on the 28 of April, my tumor was 3-cm big so went trans lab and now I'm on the recovering end on the picture , I'm left SSD now but I can still function, just have to take it slowly.  There a ton of options out there so doing some research always helps.  Any questions you may have I'm sure we can all try and help you out with or point you out in the right direction to get that answer.    Good Luck

[Jim Scott]

Welcome, jays:

I have my own opinions but since I'm 12th in line with a reply to your post, it seems rather redundant to offer them because others have already stated basically the same thing.  You do have options and by now, I'm sure you know what they are - so I won't repeat them.  Research and ask questions but don't allow yourself to feel rushed or panicked.  Remember that an acoustic neuroma is (almost) always benign and definitely treatable.  The harsh reality is that no matter what treatment option you chose to employ, the outcome simply cannot be guaranteed.  We all wish it were otherwise.  No one wants to take chances but with an acoustic neuroma, you can only go with probabilities and, of course, your own best judgment.   I had surgery followed 3 months later by (planned) irradiation.  I was 63 at the time and came through the whole process quite well.  I believe this was helped by the fact that I was in relatively good health (no diabetes, heart problems, back problems or other issues) and had a 'let's get this done and over with' attitude along with a steely determination to regain control of my life.  Fortunately, I succeeded.  I have to give God's mercy and grace much of the credit but I feel that I did all I could on my part. 

Of course, upon diagnosis, my AN was large (4.5 cm) so I really had no option other than almost immediate surgery.  I let the neurosurgeon choose the type of surgery (retrosigmoid).  He performed a debulking surgery that effectively desiccated the AN while avoiding the facial nerve.  The follow-up radiation (FSR) three months later was intended to 'finish off' the tumor while, again, sparing the facial nerve.  That seems to have been successful.  I have not experienced facial problems and on my last MRI (8/08) the remaining AN is clearly showing signs of cell death (necrosis) and has shrunk a bit.  I'm very pleased and so is my doctor.   

As has been correctly stated, these forums are very useful.  We can't offer medical advice but you'll find lots of practical information from folks who can empathize with you and offer suggestions and advice based on their own AN experience.   For now, take a deep breath and don't agonize over this.  An acoustic neuroma is a problem that will have to be addressed but it isn't the end of the world.  You'll get through this...and we'll do everything we can to help.  I wish you much success as you continue your research and begin to cope with this new, unwanted event in your life.

Jim

[amye]

Hi Jays;

I was also recently diagnosed (in mid-March) with a small AN so I really get what you're going through. In some ways, I think all the choices we have just add to the confusion! I am also in research mode, trying to figure out what to do, and would be happy to talk at greater length and share what I've learned if you want to send me a message.

I have found this forum to be incredibly helpful, full of wonderful people who are there to provide support and help ground us as we go through this process. Reaching out for help is a great thing to do! And god bless the folks on this forum for providing that...

My thoughts are with you,

Amy

[ppearl214]

Hi Jay

Nothing more for me to add as everyone's responses here have been on the money.  So, I'll give you my "welcome" to the forums... and truly.... do you homework. Research, research, research. Your AN is very small, you have time. There is no worries that this is an emergency situation, so you have time to do your research.

we are here to help.. there is a wealth of info here on the forums... and any of us are glad to help you find answers you may seek here.

Hang in there... again, welcome...

Phyl

[Mickey]

H Jay!  Alot of ways to do things depending mostly what you feel comfortable doing. One thing in your favor is the size is small and alows you the time to mull things over. Whatever you choose at this stage of the game I can`t see you going wrong but I do think you must have a game plan to follow. Best Wishes, Mickey