Newly diagnosed

[appleblossom]

Hello all!  I was diagnosed on 7/13/12.  Friday the 13th will never be the same for me!  I had been sick for 8 weeks with what I was told was a virus.  But the ENT came into the room, looked at my 9 year old sitting in the chair next to me, and bluntly told me my MRI showed I had a tumor.  I bit my cheek the whole time so I would not cry in front of my son.  Being the only one in the area with an AN is kind of scary, but I'm glad there is a forum where I can meet other people like me, people that can tell me what to expect and offer support.  The few people we have told so far act as though I have been given a death sentence.  People keep asking me how I feel as though I should be weak and helpless.  I was a little nervous when I found out my doctor is one year younger than me, I'm 35, and this is his first "real job".  He trained for a couple years at the Michigan Ear Institute which I guess is pretty good. I have a strange sense of peace that everything will be ok.  Every night I lurk through the posts here so I've been learning a lot.  I try to avoid the negative stories, not because I'm naive, I just want to keep a positive outlook.  I realize there could be complications, and I am ready to accept that if it happens, but I think my recovery will go better if I visualize good things.  My surgery has not been scheduled yet and I can't remember which one he told me.  I think from listening to all of you that it will be translab since he said I would lose all hearing and he would use ab fat to patch me up.  I have about 50% hearing in my left ear right now.  Ear fullness, sudden hearing loss and vertigo hit me all at once back in May.  Steroids made all that go away, except my hearing never came back.  I got the lovely injection directly into the ear drum a couple weeks after that and a recommendation to have an MRI.  It was just a suggestion, but something inside told me to do it.  SO glad I did! Once again, I am so thankful I found this site.  I have learned so much and I feel confident that everything will work out the way it's supposed to.

[MDemisay]

Jen,

Just a suggestion, we all have to do what feels right for us, for we all have to live with the consequences of our decisions whatever they may be. My advice is this DO NOT GO WITH THE FIRST OPINION if you have time, get a second and third opinion at least. Then set your choices out before you. This road is long and hard for you as it is with all of us. Be open, what you are considering is brain surgery!

Certainly, do not follow my poor example of putting it off an entire summer (in 2004) and getting _14__opinions (that's too much) (I wanted to avoid surgery) don't rush things get a top doctor with experience in your area. Before you consider one approach over the others, consider them all.

Good luck with your journey, check back often, as I am sure you will have questions. Remember, all of us are here to be helpful and prayerful.

Mike

[CHD63]

Hi Jen and welcome to this forum .....

Yes, hearing the diagnosis of an acoustic neuroma is a scary thing.  I hope you can relax a bit, do more research, and take your time to find a doctor who has treated many acoustic neuromas.  Because of the rarity of ANs, you really want someone with much experience specific to ANs, not just any brain tumor.

At 1.2 cm, you should have all options open to you ..... wait and watch, radiation treatment, or surgical removal ..... unless your symptoms are very troubling.

You are the judge of your own body and what is best for you so do not be misled by well meaning friends, family, or doctors.  Do check out all of your options before deciding.

Many thoughts and prayers.

Clarice

[ash]

PLEASE GET AT THE MINIMUM 3 OPINIONS! I live in NJ and went to California for treatment. Dr. Chang at Stanford will give you his opinion if you contact him. Good Luck.

Bill

[Tisha]

I agree with everyone...please slow down.  Your AN is small enough for you to not rush.  I definitely wouldn't rush into surgery.  I understand the need not to read negative stories...but I think you do have to read them.  There are all sorts of outcomes with surgery...some good, some bad, and you need to be armed with all the information to make the best decision.

When I found out I was just devastated and cried for a week.  When I finally was able to pull myself together, my Dh and I researched quite a bit.  I thankfully found this website and it was the catalyst for my research and helping me make my decision (which was radiation with Dr. Chang at Stanford).

I would send your MRI's out to at least 3 different doctors.  Dr. Chang does 50-50 surgery/radiation, so he wouldn't be as partial one against the other.  Unlike myself, you've lost hearing in you ear, so you may get a different opinion (for all sorts of reasons).

So, my suggestion is to cancel any surgery appts. at this time.  Request information from the ANA and start reading all you can on this website...even the "negative" stories.  Those actually helped sway me towards radiation.  YOu also have to keep in mind everyone's distinct personality.  Some people were candidates for radiation, but the thought of the tumor in their head wasn't appealing to them for a variety of reasons.  Radiation was my choice because I did have hearing to save AND I didn't want to take the chance of facial paralysis and CK has a good record for that. 

Please know we KNOW how you feel, and how unfair it is.  I'm 3.5 years post-CK now.  I've definitely had my ups and downs on this journey and feeling better all the time for the most part.  I do not regret my decision...but you have to do the research and talk to the doctors.  Peace.
Tisha

[leapyrtwins]

The number of opinions you seek is totally up to you.  I only saw one doctor - he does both surgery and radiation - and I was 100% certain that he was the doctor for me.  However, he was highly qualified and had done many, many AN surgeries - despite the fact that he's only a year older than I am.  (I was 45 1/2 at the time of my diagnosis).

There are many fine doctors at and/or trained at Michigan Ear; they have a great reputation.

I think what those who posted before me are trying to say is that it's VITAL that you have a doctor with lots of experience to treat your AN.

Just the way this doctor told you had an AN - without any regard for your young son being present - would make me think twice. 

You also mention an ENT.  Generally the type of doctor who treats ANs is a neurotologist or other type of ear specialist who typically works with a neurosurgeon when it comes to surgery.

As others have suggested, please slow down.

If you need a few suggestions for doctors in your area, don't hesitate to search the Forum - the ANA has an excellent list of doctors on the main web page - and in addition, you'll find many posting by Forumites who highly recommend their docs.

I personally have an excellent doctor; if you're anywhere near Illinois.

Best,

Jan

[appleblossom]

I appreciate all of your comments and concerns.    The watch and wait stage didn't appeal to me since I had already lost half my hearing and am starting to experience some facial numbness.  Radiation also didn't appeal to me (or the specialist) since I am only 35 and the risk of malignancy  has not been disproved. Plus I know if I left a tumor in my head I would think about it everyday and I would worry (obsessively). So for me and my husband, surgery made the most sense.  I am comfortable with that decision.  I lurk these forums every night and have looked at so many AN related web sites and looked at so many medical journal articles because I believe we are our own best advocates to our health and well being.  I agree that I need to ask the specialist more questions before we proceed.  I've printed out the list of questions to ask from the ANA website.

[CarolineO]

Appleblossom,

Sorry to hear about your diagnosis.  I do want to let you know that you are not alone. 
My daughter was 14 years old when I took her to the ENT (first hearing test) on 8/31/10.  They noted that she
only had 20 % hearing in her right ear and sent results to ENT. Her ENT appointment was 1 hour later. 
Difficult discussion with the doctor as they tried to get an MRI Scheduled for that day but had to wait until 9/1/10.

My daughter had a 3 1/2 CM tumor on her 8th cranial nerve.  Caught it at a time when she was getting sicker and sicker.
Ear felt "full" or plugged...ringing in her ear, stomach upset, headaches, etc.  10/31/10 she had surgery (12 1/2 hour) and removed
a 3.5 cm tumor.  The next day they did another MRI and discovered another tumor.  Second surgery 10/5/10... (5 1/2 hour).
She had a baha implant in Feb. 2011.  Played on her High School JV Soccer team (defense) 2011/2012.  She runs daily.

We did find out she has another tumor.  How strange as it is NOT NF2.  They are not sure if this tumor is related to the
first two or something different.  She has MRI's every 6 months and we are just watching to see if she'll have Radiation.

She does not have any facial damage or any other issues, except unable to hear from her right ear.  Doesn't slow her down
but has made her faith stronger and her focus on goals so much clearer.

Hang in there.  It is not all bad.  Trust that you are not alone and there are other people in this forum who can understand your
fear.  Although no one has experienced exactly what you are ... we care and understand how frightening this diagnosis can be.
My daughter turned 16 in June.  She drives, listens to music, runs, plays sports, swims.... people who don't know about her
experience would never guess. 

Keep us posted on your progress.  You are in my prayers!

Caroline

[Chances3]

Hi Jen,

I am so sorry that at such a young age, you have to deal with this.  You will find here a collection of the most wonderful and caring people in the world.  We all have one thing in common, we have had or still have a Acoustic Neuroma.  Many have posted some very good advice, there is not much I can add, but to say learn as much as you can before making a decision.  If you chose surgery, make sure the team of surgeons are experienced in this type of operation.  Don't hesitate to ask members here about the doctors you want to use to gauge their results.  Stay strong !

God Bless.

[kareno]

Appleblossom:

I am sorry that you have to deal with all of this and sad to hear that your son had to hear the news while you were trying to process all of this.  I will reiterate that a neurosurgeon with LOTS of experience in removing AN's is a must.  Have patience with the whole process as time heals.  Sending you positive energy!!

Karen

[henry]

Appleblossom
When i first learned i had a brain tumor all i could think of was get it out...  I live in Connecticut so I went right to Yale.  Surgen told me i had an A.N. it was small, rarely cancer, and slow growing.  Go home and enjoy your life.  At the time i thought he was being pompus.  I set up a meeting with the yale gamma knife team but then canceled it and found a good team at Hartford hospital to see for another opnion.  In the mean time i went to some support group meetings in New York at NYU.  I learned the good, bad, and ugly of large Tumors, and side affects of having the 10 to 12 hour surgery to have them removed.
I gathered as much information as i could, met with the Dr's in Hartford and decided to monitor the tumor and hearing loss with bi yearly MRI and hearing tests.  Tumor gets larger, we will decide what to do then.  The treatment of A.N's has advanced so much in the last 10 years, you can just imagine what it will be like if i can get 10 years before surgery.  my symptoms are mild hearing loss 50% left ear, ringing in the ear.  Good luck with your decision making process.  Henry

[lrobie]

Welcome to the ANA forum!  You will find all kinds of information and gain some new friends who are very supportive and have walked in those shoes.  I just want to add that getting too many opinions can be stressful.  Especially if they all differ.  You are the one who ultimately decides on what you want to do with your diagnosis.  It took me three years and some growth, but I made that right choice.

I wish you luck in your research.

Lisa

[PamJ]

Hi Jen I was told here in England that if you had to have a brain tumour an Acoustic Neuroma is one of the better ones (if that's possible).  I was 'wait and watch' for three years and eventually had to have it out by translab, I had to lose my hearing on the right side but have recently had a BAHA fitted.  Although after my op I had trouble with my balance and facial palsy eveything is gradually getting back to normal and the way I look at this is acoustic neuromas are non cancerous so we are one of the lucky few.  Think positive and you'll be okay.

[Manders]

Hi Appleblossom and welcome to the forum! Deciding on a treatment option is probably one of the most difficult things to do once you find out you have an AN. But no one can make that decision for you and as long as you are happy with the decision you've made you should stick with it. Of course, there is no rush as everyone has said--these tumors are pretty slow growing.
However, I did feel similarly to you once I found out I had an AN. I just wanted it out and over with so I could move on with my life. I knew I would just obsess over it otherwise. I had translab surgery done in May and if you would like to read all about that experience you can visit my blog: www.awkwardturtlesan.blogspot.com. I tried to make it as informative as possible to help others who would be going through this experience after me. I hope it helps and I'll be praying for you as you move forward in your decision making process. 

Manders

[millie]

Hi Jen!
You found the forum-a Godsend!
Your tumor is about the size of mine!  I too am a newbie.  I too have symptoms as you describe.  I too want it out.  My reasoning is if it comes back, then I will have it radiated. 
Like you, I was shocked and frightened when my local ENT solemly sat down and said I had a brain tumor and that he would give me the names of two highly respected ENT's who had more experience with these.  (These ENT's were connected to surgeons/hospitals/radiooncologists)
At first, I was told to watch and wait.  Like Henry, I was a little miffed when told to go home and relax I had the luxury of time.  That was February.  Then came July a new MRI and the thing grew 2 mm in one direction and 1 mm in the next.  I am a pretty young healthy 64.  The doctors I have spoken to about the new MRI's all suggest treatment, and I have both radiation and surgery (translab) open to me.
I too have lost my useful hearing in the left ear-all in the last six months although it was starting to be a little shady three four years ago.  I think trans lab has the best option for preserving my facial nerve.  My neuroma is mostly in the auditory canal.
The doctor said I could wait till Oct. 1 when my medicare kicks in.
I am seeing one more ENT August 14th and then I will make up my mind for sure.
So do your research and find the doctors you think are best.  Someone on this site probably can give you three  excellent names within a sixty-seventy mile radius. 
Hang in there.
We are here when you need to connect.
Millie