Recently diagnosed

[mystic0510]

Hello everyone, I've been lurking behind the scenes for a few weeks now. This sight has been a godsend to me as I'm sure it has been for everyone here. Allow me to introduce myself, My name is Bob and I recently went to a hearing doctor to see if something could be done with my gradual hearing loss in my left ear. He did his tests and sent me for an MRI and that was when I discovered I had an AN. That was when I first found this sight. After the initial shock of discovering that something was growing in my head, the more I visited here, the more "OK" I have become with the whole situation. The doctor at my first consultation told me the treatment options and suggested I do some balance tests to see where we stood and then discuss what we would do. I thought for sure when I went back that he would suggest either radiation or surgery since he considered the tumor medium. it is 1.2 x 1.6. and in reading about the two options I decided if that was the case, I wanted to get it out of there so I could go on living the rest of my life. I'm 51 in a few days and had no desire to check out soon. I just have not been comfortable with irradiating anything sharing space with my brain. After the tests I went back and the Dr said that I had lost about 25% of the balance on my left side but my body had adjusted and was very good overall. Because of this he suggested we watch and wait. My wife and I found ourselves trying to talk him into the surgery but he stood firm. Overall my overall quality of life is good and he suggested that more could go wrong at this juncture if we opted for treatment. It might throw my balance more out of whack then if my balance was poor. He suggested I do another MRI in 6 months to see how fast it is growing if at all. He said that its possible it had exhausted its blood supply and was no longer growing. So here I am watching and waiting and hopefully I won't have to do surgery or radiation in the near future. But somehow I know that it will be one or the other. Thank you for listening. I'm glad I found you all and look forward to being a part of this growing extended family.

[cindyj]

Hi, Bob, and welcome!  (I'm also 51  ) - sounds like you have a good handle on things and the plan to see how things look in six months after another MRI sound good also!  If you'd like more info, you can contact the ANA office and request various brochures w/ a wealth of info on all things AN related.  Hope you'll continue to hang out with us some and keep us posted.  Feel free to ask any questions you may have - someone around here usually can come up w/ an answer

Take care,

Cindy

[Sue]

Hi and welcome to the forum.  Sorry you have joined our club, but we welcome you.   First of all, your AN will not cause you to check out soon.  Be careful crossing streets and driving your car, because that is where the danger lies!   You can read my account of my gamma knife experience if you want.  The link is down by my signature.   Anyway, you do have options and I am sure you will get this taken care of one way or another.   As you know by now, it is slow growing so it isn't an emergency to get it out immediately.   My only advice is to gather as much information as you can about all your options.   It is nice to go with you "gut" but sometimes the gut needs a little more info before a decision can be made.   I guess what I am saying is this:  please don't throw out radiation as a treatment until you have researched it and weighed the pros and cons.  Likewise with microsurgery.  And make sure you  get the best that you can get - your surgical team must be highly experienced.  That goes for radiation, too.  

Best of luck to you in your eventual treatment and healing.

Sue in Vancouver, WA  USA

[CHD63]

Hi Bob and welcome to this forum .....

So glad you decided to start posting.  You will find many new friends who have had many of the thoughts you are having right now.

Cindy made a very good suggestion to send for the ANA free information packet.  You can call them or order them online:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195

You can also send a copy of your MRI to House Ear Institute in Los Angeles for a free evaluation as a second opinion, with no obligation.  See:  http://www.houseearclinic.com/consultation/acousticneuroma

Best wishes as you walk through this decision making process.  Be sure to let us know how it all goes.

Clarice

[mystic0510]

Thank you all for your quick responses, I have already received my info packet which is the source of all the info I have received to date. I am confident that when the time comes, the decision I make will be the right one for myself, and my family as well because they are going to have to put up with me regardless of which way we decide to go. Although he is not listed on this site, I am confident with the Dr I currently have in that he is not trying to rush me into any form of treatment at the time. Also when he sent  me for the MRI, he didn't mention anything about what he suspected it was, which saved me alot of needless worry. All he said was he wanted to see if there was a problem with the nerve that was causing the hearing loss. As I said before, I was intent of doing whatever needed to be done, and he said to wait and given the reasons he told me to wait I decided it is indeed the correct course to take now. I'm not one to rush into things, and I apologize if Y gave you that impression. We'll see what the MRI says in October and take it from there. I'll keep in touch and let you know how things progress., I may not be here daily but at least on my days off from work. Thank you for your support.
Bob

[Jim Scott]

Hi, Bob, and welcome.

I'm sorry I wasn't quick enough to catch your initial post but I'm pleased that Cindy, Sue and Clarice offered you their welcome - and some good advice.  It appears as if you have a diligent and pragmatic doctor that has your best interest at heart in his opinion that you observe the AN (via MRI scans).  We call that: 'watch-and-wait'.  Let's hope that you can continue observing for many years to come.   We welcome your presence whenever you can be here, Bob.  Feel free to ask questions , answer them or just vent, whenever you feel the need.  We're 'family', here. 

Jim

[Mickey]

Hi Bob! Started out in similiar fashion almost 4 years ago. Went 6 mo. MRI for two years, now going 1 time a year . So far stable with no real increase in any symptoms or size. Feel comfortable with the W+W approach to see what happens to usually a very slow moving tumor especially if your feeling good. You just never know if these types of tumors have reach there max. Keep the faith! Plenty of W+W out here to talk to with the hope of staying that way. Best wishes, Mickey

[mystic0510]

Thank you Jim an Mickey,
That is good news, sometimes when you hear something you're not sure if its true, even when you hear it from a doctor. But Mickey, I guess it is true that these things can reach a max, only time will tell I guess. As I said in my previous post, I don't get on here that often but I will try to stop and visit a little more often. Thanks again
Bob

[suboo73]

Hi Bob!

Sorry you had to join this club too, but WELCOME!

I am following right behind Mickey in the Watch & Wait Brigade - sometimes it is not comfortable for me, but I get along with no major changes in the last 3 years.
And here's something to think about - before I was diagnosed, I was 'misdiagnosed' for at least 12 years! 
My hearing was decreasing, and the docs said, oh you are just getting 'older.'  WAIT A MINUTE - at 40 years old?
Fast forward to the present and I am 55.  My AN is stable in the last 3 years. 
I believe my hearing is at about 50% loss, and I am sure it was not that bad when I first noticed the 'fullness' in my ear.
It may be the price I pay for Watch & Wait, but I have accepted this at least for today.

During the last 3 years, my sister was diagnosed with an AN (right before me, and the reason i was tested), and my dad had a stroke.
So i decided that after visiting the docs, hearing treatments options, and knowing the AN is slow growing, I would so W & W for awhile.
I was in medical overload, and decided W & W would work for me - of course, with the option to change my mind at any point - after all, I am a woman! 

Everyone's AN journey is unique -you will find your way and what is comfortable for you and your family.

All my best! 
Take care and keep posting!

Sue 

[mystic0510]

Thanks Sue, the more I read, the more comfortable I am in watching and waiting. I'm very happy I chose the doctor that I did when I went to do something about my hearing loss, actually I went for the hearing test and to discuss a hearing aid. He suggested I get an MRI and didn't mention AN until I consulted with him about the results, since then there has been a whirlwind of emotions. I am now "OK" with what is going on, at least enough so to enjoy the next 5 months or so until my next MRI. If it is stable, great, if not I know I will have to do something to take care of it. As I've tried to do for the better part of my adult life, I'll hope for the best, and be prepared for the worst. Thanks again, and best wishes to everyone here. When something like this occurs, its nice to know that you're not alone.
Bob