NEWLY DIAGNOSED AND SCARED

[JO ANN]

I was just diagnosed this week with a 1.2cm acoustic neuroma.  I was referred to another doctor to discuss treatment options but don't have an appointment with him until 10/5/11. 

I have been to many websites and I am on an emotional roller coaster.  I have a 3 year old daughter, who needs her mother,  and this whole things is so scary, it just makes me want to cry.

I want to go to the best doctor in the area but don't know where to start.  I about 1 hour north of Chicago, near Barrington, IL.

I would appreciate any help from others that have been through this.  I should use all the real information I can get, as well as the reassurance that it will be OK.

[New girl]

Hi Jo Ann,

Sorry to hear of your diagnosis.  The emotional rollarcoaster is normal - you are not alone.  This forum is great for getting info on people's real experiences.  I am from MA so I do not know any docs from IL but I'm sure someone else will chime in with info.  Or you can search the forum posts using IL as a keyword.  I was diagnosed in June 2011 and my first appt was also scheduled far out.  I told them I was very upset and could not wait and they ended up squeezing me in within a week.  After the first appt I felt like I had a much better grasp on where to go next and what info I needed to start looking into.

There are many success stories on this site so there is definately hope.  I am up for surgery at the end of September so I hope to be one of them.  Hang in there!  There may also be a local support group/people willing talk posted on the acoustic neuroma main website where you can talk to someone local.  Hang in there!

[Jim Scott]

Hi, Jo Ann and welcome ~

I'm sorry you've been diagnosed with an acoustic neuroma but glad that you've discovered the ANA website discussion forums.  I think we can be a good source of support for you because most of us have been where you are now; a bit frightened, confused and feeling overwhelmed.  Your anxiety is perfectly normal.  ANs are relatively rare and pose a distinct challenge for both doctor and patient.  The good news is that they are benign tumors.  Yours may grow - but it will not metastasize.  This is not cancer and, unless the AN is never addressed, not fatal.  However, the benign tumor is in a location (your skull) that poses problems, especially as the AN grows, as most do.  The good part is that with a small AN, like yours, you'll likely have the option of selecting either surgery to remove it or radiation to halt it's growth.  There are a number of doctors that treat acoustic neuroma patients located in and around Chicago.  I'm sure some of our Illinois residents will be along soon to tell you about them.   I can tell you that most AN patients do O.K. and that the majority of folks who encounter complications following surgery or radiation see those problems eventually resolve.  I had a large (4.5 cm) AN that was 'debulked', it's blood supply severed - and then radiated.  I had almost no problems.  Today, 5 years later, I'm enjoying my life.  My story is not so rare for AN patients, as you'll soon learn from reading these forums.  Although you'll sometimes feel like you're on an emotional roller coaster, you'll get through this, Jo Ann, and we'll be here to advise, help and support you as you go forward.

Jim

[CHD63]

Hi Jo Ann and welcome to this forum of caring, supportive new AN friends .....

I can well remember the terror I felt when first hearing the words "Looks like you have a tumor."  My brain froze and I could not even think what questions to ask, let alone anything the doctor was telling me.  I had gone by myself to the appointment ..... sure he was going to say all the tests are normal.  Right up front, my doctor said House Ear Clinic in Los Angeles is the best place to go for treatment but it is a long ways from here.  End of first story, I went to Duke University in North Carolina for surgical removal (which is a 6 hour drive from where I live).

There are many excellent physicians around the country.  The most important thing to know is how many ANs they treat each year (since they are so rare).  This is one time when you want someone with vast experience in the treatment of acoustic neuromas, specifically, not just brain tumors.

If you have not already done so, you should send for the free informational booklets from the ANA (see http://anausa.org/index.php/contact-us/free-ana-information-packet  ).  You can also look at the medical resources on the home page (http://anausa.org/index.php/medical-resources  ) for additional information on selecting a physician.  Keep in mind that not all qualified physicians are listed on the ANA list.

There are also a number of highly respected medical facilities around the country who will do free consultations for additional opinions, if you send your MRI and most recent audiogram to them ..... this includes both surgeons and radiotherapy physicians.

As Jim said, at 1.2 cm, you should have all three options (wait and watch, surgical removal, or radiosurgery), unless your symptoms are debilitating or your AN is already pressing on the brainstem or cochlea.

Tell us a little bit more about your situation, symptom-wise.

Many thoughts and prayers as you walk through this research/information finding and treatment decision-making phase of this whole thing (in many ways the most troubling part).

Clarice

[JO ANN]

Thank you for your kind words.  Please keep in mind that I was just diagnosed this week - I don't have too much details.

Honestly, I had ringing in my ear for 2 years, no pain and no other issues, and finally decided to get it looked at.  I went for a hearing test and.......

I was told the following;

1. 1.2cm benign tumor on the hearing nerve
2. Significant hearing loss in right ear, with tenninitis

No other symptoms.

I have found great details on treatment options today, that has made me feel a little less teary. 

I am so glad this forum is here.  It has helped me take a deep breath, and just think.

[TJ]

Jo Ann

You are doing exactly what you need to do and that is take a deep breath, step back, and do your homework.  You may already know this but An's are usually very slow growing so you have the time you need to make the right decision for you.  Each of us have gone down this road and there is plenty of support on the forum.

Good Luck

TJ

[HeidiC]

I totally understand how you feel.  I have a 5 and 6 year old and obviously I want to be around while they grow up.  My surgery is in about a month, and as everything falls into place, my fears are settling down a bit.  I am preparing things for the kids, things I want them to know etc, just in case...but, that said, things should turn out just fine.  It is comforting to know that things are prepared, just in case.

Read up on the information, theres a lot of it out there!  Then you can see some Dr.s, get some choices, come to a decision, and move on with your life raising your baby girl!

~Heidi

[jphua]

I am sorry to hear of your diagnosis.  I just had my surgery done 3 weeks ago - 4 months after my diagnosis. The past 4 months
before the surgery had been the toughest in my life, having to deal with SSD, work, taking care of my kids and
the decision on surgery.  I did a lot of research and talked to many doctors in the country from SF, NY,
LA and even Toronto. Would advise you to get second and third opinion and not just go with first doctor.
Do check how many AN surgeries and success rate of the doctor.

[Shawn713]

Hi Jo Ann,

I was diagnosed with a 1.1 cm AN just before Thanksgiving 2010.  Mine was small enough that I was told I could watch and wait for a year or so, or treat it now, since I had some ear fullness.  I opted for treatment now, as I did not want to wait for it to get bigger.  For treatment, I was recommended a single dose of radiation (LINAC Stereotactic Radiosurgery) at the U of Wisconsin medical center and things have gone well so far.  I just had my 6 month MRI and the tumor has not grown ( just plumped a little from the radiation, they think).  Other than some slight balance issues and moderate hearing loss (hopefully temporary), my quality of life has been very good.  I still run, bike, play golf, travel, work, etc without any other side effects.  You have several options, so just make the best informed decision you can.  This website is great for questions, research, and support.  Best of luck to you!

Shawn

[leapyrtwins]

Hi, Jo Ann.

I just sent you a PM.

I know the best docs in your area - because I live in your area.

Grew up in Rolling Meadows; lived in Niles at the time of my surgery; now live in Glenview.

I'm a mom myself of two soon-to-be 16 year olds.

Jan

[Keeping Up]

Hello Jo Anne

I am more on the reassurance side as I am watch & wait.  I am 39 years old, diagnosed almost three years ago and have four children (9, 7, 5 & 4).  I guess my little one was 18 months old when I was diagnosed - WOW,  had to do the math on that one.

I am lucky - for me, other than hearing loss (tinnitus & intermittent balance issues), my tumour (smaller at last MRI than yours ... my next MRI is in December) has ABSOLUTELY no impact on my life.  I work full time (50+ a week) as a finance/accounting type.  I ride my bike with my family (and pull the WEE HOO bike trailer with the 4 year old).  We ski on the weekends in the winter (I live in Calgary, AB and you can ski just a bout 6 months of the year). I go to the local swimming leisure centre and fly down slides.  I do everything ... and should be a heck of a lot more active to stay healthy! 

I may face surgery (or radiation - less fond of that option) at some point - maybe 6 months down the road if the tumour has grown or maybe 10+ years away.  No clue and it truly doesn't bother me now that I have gotten use to the thing. 

NOt indicating this will be your path but I am not too unique on these boards -  watch & wait, mother of young children, working mom blah blah blah, there are several us with various characteristics.

I was very concerned the first few months but once I saw all the various specialists - it took 6+ months due to the low urgency of my tumour - I have been good to go.  I will need, I think, to make a decision on a hearing aid soon as my hearing is getting quite (humorously) poor at times but I will wait until after my MRI in December.

Take care, have fun with your little one and do your research.

Ann

[JAndrews]

I understand what you are going thru. My children were 8 weeks old and 2 1/2 when I was diagnosed with my tumor. The best advice I can give you is to go to House Ear in LA. I am fine. I am the same as you----my children needed their mom to be ok--no horrible life long side effects and to get that entire tumor out of my head---which all came true. I know this is not always possible financially for everyone---but its only money. This is your life. I figured as long as I had a roof over our heads, and the basics, my life was a heck of alot more important than money ever would be. I would do it all again----mortgage my house--max out credit cards--sell cars etc.......please email me directly if you would like to---I will answer any questions you have---and no questions are stupid---I will give you all the time you need. I am 41, my kids are 5 and almost 3 now---my life is great---directly due to the best surgeons for my tumor removal. adon3340@yahoo.com
Take care, hang in there, you are going to be fine--don't make any quick decisions
Julie Andrews

[Cheryl R]

The Univ of Iowa also has a very good neurotologist which does 60-70 ANs a year with Dr Bruce Gantz.     I have NF2 so more than one tumor and surgery and feel very lucky to have it in the state.     There have been many of us here go to Iowa and many from out of state.      Jan has wrote to you and knows the local drs and that is important to many of us.             I have talked to the HEI drs at the symposiums I have attended and their NF2 care is what my dr has also done.           One has to do what is right for you and your life.                   
                                                      Cheryl R

[schmidtkat]

Hi Jo Ann,

My heart goes out to you. I was diagnosed July 28th with a 3cm+ AN. I had never heard of these things, was scared as you are and have 2 children. Due to the size of my tumor the options were pretty much a non-decision, surgical removal. In some ways that may have been a blessing.

I am the type of person who wanted to find out as much as I could and figure out the best place to go. With one shot at this surgery I wanted the best. As others have told you, with the size of yours you have options. I would still suggest getting more than one opinion.

For me, I ended up with Drs. House and Schwartz at the HEI and would recommend them in a heartbeat. I had surgery on Sept 2nd. They fully removed the tumor with and did no damage to other nerves in the process. My stay was anticipated to be 12-14 days and I actually was released from the hospital on day 4 and headed home (to Iowa) 2 days later. I am recovering at home now and taking it very slow.

There are lots of great Drs. out there and several treatment options for you. So I would suggest take your time to feel any emotions you feel. Allow yourself time to research and find the answers you need to make a decision and go with what seems right for you. You've found a great place for support here on the ANA Discussion Forum. I continue to be blessed with support here and know that you will be too.

God bless ~ Kathy

[moe]

Hi Jo An,
Just wanted to welcome you and hope you are feeling more calm now that the shock has worn off.
It is good that the only symptom you have is ringing in the ear. You were right to get it checked it out, and it is small so rest easy, you should do fine whichever option you choose. Knowledge is power so keep doing your homework.
Lots of great advice here so far!
Maureen