Another New Member

[drasberry]

Yep, another newbie here.  I was diagnosed with a 1.5 cm AN about 3 weeks ago.  The tumor showed up on my MRI after multiple visits to my general practicioner and the ENT doctors.  I was persistent in telling them "Something is wrong" even after they assured me it was not a anything as serious as a tumor, Hah!  My wife and I are now in the process of finding the right doctors to speak with and analyze my situation.  I have been on this web site and these forums a lot reading and gathering information about my condition.  The association has also sent me a packet of information that I have read through and found very helpful.

So, far I am have experienced about 30% hearing loss in my right ear, with the accursed tinitus of course!  I am also experiencing dizzy spells and some imbalance issues, but they are limited to anywhere from one minute to a couple of hours.  I am also seem to be much more fatigued than normal and at times even in the middle of the day just want to put my head down for a bit (even on my desk at my office).  I was interested to read many others here who have or are experiencing the same fatigue problems.  I am somewhat anxious about what course of treatment I will pursue and of course think about it most of the day, but after reading the experiences of others here I am not scared.

I am 44 years old and at this point am leaning toward an operation, but as I stated need to speak with the appropriate doctors to get thier advice and gather more information.  I have spoken with a couple of ENT doctors so far and of course my general practicioner.  I have an appointment with Dr. Steenerson (who's name I got from this website) and also an appointment with Dr. Maddox at Emory here in Atlanta.  Has anyone had experience with either of these doctors?

Darin

[Kaybo]

Hi Darin~
Sorry you are here, but is the best place to be if you have an AN!  Glad you already received the info packet for the ANA - it is very useful.  I live in Texas, so I don't have any advice for Dr.'s in Atlanta.  Good luck in all your "seeking out" of different doctors & treatment options.  It can be a very daunting process, but you feel better when you make a decisoin.  If I can be of any assistance, please don't hesitiate to contact me.

K

[leapyrtwins]

Hi, Darin 

As you know, we are all here to support you, so if you have any questions just ask away!

Good for you for being persistent - lots of ANs are misdiagnosed for years.

The mid-40s seems to be the age for lots of diagnoses - I was diagnosed last year at age 45.

I don't have any direct experience with Dr. Maddox at Emery, but I have seen his name mentioned on this forum several times so I know others have been to him.  If you search "Dr. Maddox" or "Emery" you'll be able to find posts about him.

I'm glad to hear you already requested the info from the ANA - I found it very helpful, too.

Jan

[Debbi]

Hi Darin-

Welcome to our little group - sorry you have to be here, but glad you found us.  I think that where you are at right now - the decisoin process - is one of the hardest parts of this journey for many people.  You are doing the right thing, though, by reading, researching, and talking to multiple treatement teams. 

Post as many questions as you'd like, and when/if the time is right, talk with some of us on the phone if you think that will help.  We've all been there (or, in some cases, are there now) so you'll always have an understanding ear here.

Wishing you well,
Debbi

[fbarbera]

Hello Darin,

I was diagnosed about a year ago with a 2.5 cm AN, similar symptoms except for some reason no tinnitus.  Wanted to pass along a link to my website, where I recount in detail the process I went through in terms of researching treatment alternatives (see my sig line below).  Ultimately, I selected CK but surgery is a reasonable option, with its own attendant risks.  It sounds like you are well on your way to making a decision, but I thought the site might be helpful as you weigh alternatives.

I had similar kind of balance episodes before treatment and as you will see in the "post-treatment" section of my site, the unsteadiness has continued intermittently after treatment.  My doctors tell me these balance issues usually subside, usually within 18 months of treatment, so we will see.  I am pretty confident they will.  In any event, some doctors will recommend taking certain balance tests before treatment to determine how the tumor is impinging on the balance nerve.  I would follow through with those types of tests and learn what you can about how the various treatments will impact your balance symptoms.   

Unfortunately, I feel the data out there about post-treatment symptoms is just not that great.  The ANA conducted a symptom survey in 2007 but they still have not published the results.  Maybe they will give you a glimpse if you contact them.  They did a prior survey in 1997 or 1998, the results of which are on sale at their website (go to the On Sale section).  Definitely worth checking out.  Surgeons will likely say you will have intense dizziness for a few days or weeks after surgery but that will fade away fairly quickly as your body adapts.  This is true as far as it goes, but I do not know if it paints a complete picture.  I think both radiation and surgery patients have longer-term balance issues, but it is hard to tell the extent to which that is the case.  Again, I think the surveys and quality of life studies are the best we have to go on right now.

There are links on my website (in the "choosing a treatment" section) to medical abstracts summarizing the results of quality of life studies comparing radiotherapy and surgical outcomes.  Also worth considering and asking your doctors about, I think.

Best of luck to you.  Please let us know if there's any way we can help.

Francesco

[cindyj]

Hi Darin and Welcome,

I live in Cumming and since being diagnosed in Feb of this year, I have seen most of the specialists here in Atlanta, including Dr. Steenerson, Dr. Mattox and Dr. Crocker at Emory, Dr. Murphy, Dr. Steuer...I liked them ALL!  They all told me about all my options and did not push me one way or the other.

Do you live in the Atl area?  Glad you found this site - I'm sure you can already see that it is an amazing place for information and AN friendship.  Just let us know how we can help.

Cindy

[sgerrard]

Another welcome from me, Darin. I don't have much to add, except that members of the forum have mentioned Dr. Maddox's name numerous times, with positive things to say about him. Glad you found us here.

Steve

[tenai98]

Hi Darren
Me too I am a newbie and searching all of my options...You must be pro active..I too had to push to get a MRI as I knew something wasnt right when all I was told was get use to being hard of hearing and get a hearing aid...HAA!  I was right. It took two yrs to get my diagnose...Now the fun begins here in Canada as I learned most docs here prefer the wait and watch situation...So now my nose is to the ground.  I am sending my MRI to the House clinic for the opinion...Keep ur spirits up and RESEARCH, RESEARCH, and ask questions til u are blue in the face no matter how frustrated the doc gets....Its ur BRAIN

JO

[ppearl214]

Hi Darin and welcome.... glad you are here as we hope we can help you out during this new journey.  I'm tickled cindy  chimed in as she was going to be my first point of reference to you, having gone recently through the same research in the same area. Cindy (whom I've had the sheer pleasure of meeting face to face) and I also know another that had Dr. Maddox as a dr and you are in fab hands at Emory.  Hoping you find the info here you seek... did want to say "welcome" to you... and we're in the wings if you need us.

Phyl

Hi Darin and Welcome,

I live in Cumming and since being diagnosed in Feb of this year, I have seen most of the specialists here in Atlanta, including Dr. Steenerson, Dr. Mattox and Dr. Crocker at Emory, Dr. Murphy, Dr. Steuer...I liked them ALL!  They all told me about all my options and did not push me one way or the other.

Do you live in the Atl area?  Glad you found this site - I'm sure you can already see that it is an amazing place for information and AN friendship.  Just let us know how we can help.

Cindy

[drasberry]

Thank you all for the welcome.
I will be meeting with each of the two doctors on separate days next week and will get a better feel for things.

Cindy, I noticed that you have chosen to have your surgery in California.  I am curious to what guided you to your decision.  Possibly the wealth of experience at the House clinic made you feel more comfortable than her closer to home?  Since I am from Marietta (a suburb on the north side of Atlanta) it sure would be nice if I have a comfort level with treatment here.

Darin

[ppearl214]

Hi Darin,

YAY Marietta! I use to work at Windy Hill Road in the office tower overlooking the highway (Interstate office pk)...

Yes, House does offer wonderful AN care/treatments, just like many others around the country. Looking forward to hearing from my dear one, cindy, regarding why she chose HEI.... and for others to share their experiences at other wonderful AN treatment facilities as well.

again, welcome! Maybe meet you next time I'm in town (Like I did with Cindy) when I visit my family in Roswell/Alpharetta.

Phyl

[LADavid]

Hi Darin
Welcome to the crew.  I was all set to recommend that you talk with Cindy then I came across her post.  There is something to be said for staying at home for the surgery -- namely you don't have to stick around some other town post-op until you're out of the woods.  With that said, House surgeons are some of the best.  I had my surgery there but I live a mere three miles down the road from St Vincents.  I'd be glad to give you my thoughts on it if you want to PM me.

And Phyl, you lived and worked in Atlanta?  I did as well during the late 70s and 80s and believe I once worked in a Windy Hill office briefly.  Spent most of my time in Piedmont Center.

David

[ppearl214]

And Phyl, you lived and worked in Atlanta?  I did as well during the late 70s and 80s and believe I once worked in a Windy Hill office briefly.  Spent most of my time in Piedmont Center.

David

Dang! Same time as me! I was there from '74 to '81, then '92 to '95.  Now, let's talk the Lime(Slime)Light, shall we?  Or Club 112 on Roswell Road!

Sorry Darin... now back to topic!
Phyl

[cindyj]

...Lime Light...wow, those were the days here in Atlanta!

Sorry, Darin!  Well, as to why I chose to go to House in LA instead of choosing a surgeon here, it really came down to that "gut" thing you have, no doubt, read about here on the site.  I felt very right about Dr. Friedman when I first talked w/ him in March, I just wasn't ready to really accept that I needed any kind of treatment at all.  When I again talked with him in August, I had the same calm, at peace, feeling and just knew that was where I should go. 

That being said, as I mentioned in my earlier post, I did like all of the surgeons and radiation oncologists that I met here.  I saw Dr. Mattox twice and was very impressed with both him and his staff.  If I had chosen radiation, I definitely would have used the Dr. Mattox/Dr. Crocker team - they were highly recommended by numerous people here on the site, as well as others here in Atl.

Did you get the PM I sent you the other day?  Feel free to contact me anytime - I don't have the expertise or experience so many of the others here have, but I'll be glad to help in anyway I can.

Cindy

[Jim Scott]

Hi, Darin:

Welcome, even though I'm sorry your AN diagnosis makes you eligible to be among our 'select' group. 

Fortunately, acoustic neuromas are benign and treatable.  Unfortunately, as my neurosurgeon once said to me:  "It's their location that makes them problematic".  You're in the crucial research/consultation stage right now and seem to be on the right course.  Fatigue is a common AN symptom, as is unilateral hearing loss.  Treatment (surgery and/or radiation) will resolve some of these but the hearing loss and tinnitus may be permanent, as you probably know.  Lets hope not. 

I wish you much success in your attempt to find a treatment, doctor and facility that will satisfy your needs.  We're here to support and advise (when asked) so please don't neglect using the resources available on these forums: other AN patients.

Jim