I am new to AN

[Jeanlr]

Hi,

I just discovered this forum.

I recently learned that I have AN. My tumor is small, 14mm x 8mm x 4 mm and I still have excellent hearing.

My doctor wants me to wait 6 months and have another MRI before doing any sort of treatment for this. This seems strange to me. I'm the type of person that likes to deal head on with problems, solve them and move on with my life. Having to wait 6 months is scarey to me. I mean, I'm walking around with a tumor in my head.

Although I have mild dizziness and headaches now I was told that it will get worst and I will lose my hearing. Shouldn't something be done now to prevent that? Basically they are waiting until I start to feel bad and my hearing fails before doing anything about it.

My job involves a lot of traveling nationally and internationally so it frightens me to think of something bad happening to me while I'm in a remote village in another country.

Is it normal to be asked to wait? I would like to hear from others who were told to wait before getting treatment. There isn't a whole a lot of books out on the market on AN written for patients so researching this hasn't been easy.

I'm confused, in shock and a bit upset over learning I have this so I'm eager to learn more to ease my fears. I would appreciate any advice.

thanks
 

[SuzeAN]

Hi Jeanair,

I am new to so don't feel you are alone!!  What you can do is research, research, research while your are "waiting".  Since being diagnosed with this  about 3 weeks ago I have been all over the internet.  Just Google Acoustic Neuroma and you will get lots of links.  This website and others have been so helpful, I feel confident when I walk in to the doctor's offfice with questions.  My neuroma is 17 mm x 25mm x 13 mm, and I am exploring all options. 

Cheers,
Sue

[Monica]

AN's are known for being very slow growing. By the time I had my MRI I had already lost some of the hearing in my right ear. When I thought about the other symptoms (noise in my ear, balance issues) I realized that I had those issues for almost a year.  The doctor's that I saw all gave me the same three options 1)wait and see 2) radiation and 3) surgery.  Like you I felt the tumor didn't belong there. I suggest you find a hospital that has a good ENT specialist in this area. I am in the Baltimore area and highly recommend Johns Hopkins. I wanted to deal with someone who had done thousands of operations for ANs - not just a few a year. I had to wait 3 months for the surgery date. Glad I got it done. Three days in the hospital and easy recovery at home. ONly issues was total hearing loss and some balance issued. I worked with a PT group on the balance issues and have pretty much tackled them. I wear a CROSSTALK hearing device when I want to have bi-lateral hearing (mostly in work situations - my family is used to dealing with me).

Read all you can.  Ask lots of questions. Glad to help with any info I can.

All the best
Monica
AN surgery Feb 04

[GM]

Something to consider while researching is going to the largest hospital in your area and using their medical library for research.  They will have newer info there, and you'll be able to access on-line medical publications as well.  Just Xerox away...      Remember the internet is a wealth of info but a lot of it is repeated or dated, you'll want to make a decision off of info that is 5 years old or newer....

Good luck in your research,

Gary

[Nancy Drew]

I don't really have much to add because I am recently diagnosed with a small AN (4x5 mm) and have been told to wait and watch also.So I feel for you and all of the confusion that goes along with it.I am like you in that I have dizziness and headaches, and my hearing is good.I just want it to all go away, but this might not be the way it works.Would just love to put my hand in my ear and pull it out and go on with life.When I start to freak out, I try to catch myself and say it's ok.Doesn't always work though because yesterday I cried all day.Guess this is just the process of learning to accept.Best wishes and as much as I hate to say this because it can sound so shallow, "Hang in there."

[GM]

NancyDrew,

It's OK to cry, that's how our body releases stress and the chemicals that build up in our systems.  Did you ever notice that you felt a lot better after crying.  I may not sound too manly here..but, I had my share of tears at the beginning...and I'm not too proud to say so. 

Research and then make an educated decision on how your going to handle it.  Research about AN's, the three basic ways to handle them:   1) "Watch & Wait"  2) Radiation, 3) Surgery
Be aware that although your family and friends will try they might have a hard time trying to  understand...we've been there.   The tinnitus, the strange sounds (clicks, pops, creaks, hiss), the full ear fealing, the hearing loss...etc...are not new to us.

You'll be OK...here's a thought for the day: “ When we walk in difficult places, God sends the strength and nourishment to face what comes our way, not all at once, but day by day “

Hang in there...

Gary

[Kathleen_Mc]

Jeanir: I can totally understand your not wanting to be one of the "monitored". I was monitored for 5 years with my A.N. regrowth and in the end it was removed surgically for the benifit of my psychological health (it was not necessary physically to removed the tumor yet). I would certainly want to have it dealt with right away if I were you, preserve as much as you can before the tumor ruins it. I had already lost all the close by nerves with the first surgery so that wasn't much of an issue and this is a typically slow growing type tumor and benign as well so that allows for time to laspe between discovery of a small tumor and  absolute need for treatment. If it is Gamma knife that you will likely turn to for treatment this has to be done while the tumor is small so do you research now and when the time is right for you speak up and get your chosen treatment. Kathleen

[teela]

I too just found out 2 weeks ago about my AN. I've already been to 2 places for consultation and just flew in last night from Mayo Clinic. My AN is 14mm x 6mm x 5 mm and have surgery scheduled for Feb. 10th. Not sure why the wait for you. I had another audiogram and my hearing is already down to 65%, so will be having the translab procedure. It was interesting to read about what to take to the hospital, since I live 9 hours from Mayo and would like to get all my ducks in a row to make it easier for my husband. I hope that you had a 2nd evaluation. I needed that just for my peace of mind. Blessings!
Teela

[antoinette]

Hi, what your doctor advises is the normal, wise procedure. An is a slow growing tumor. After 6 months the second MRI will tell if it is growing, if so, at what rate. If not, you will now know you have plenty of time to research what to do. Make your decision, yourself, not  any doctor should make that decision for you. So you must learn all there is about this AN of yours, comparing with what other people went through. You must chose carefully who is going to do the treatment or the removal. Not all doctors are the same. Experience and the team who does it is primordial. You got to shop around, sent your copy of MRI, understand what sort of surgery or treatment they offer or suggest. Well, you are in charge. it is the rest of your life involved into this decision.
Listen to all, think, let your feeling be a part of your judgment and then chose what feel right to YOU.

[ppearl214]

Hi Jeanlr and welcome to the fora.... like many others here, I'm also new and in "wait" mode as well.... I started another thread about trying to deal with the stresses of "wait" and researching mode (see thread at http://anausa.org/forum/index.php?topic=847.0).  The folks here have been fabulous in knowledge, experience and most of all, support.    Many of us are still in "wait" mode, although for me, I now have to speed up my decision making process....

Hang in there... know that you have come to a wonderful place here... everyone is so welcoming and great for a shoulder (or giggle) if you need one.

Phyllis

[Kilroy1976]

Because of my age (29) I was never really offered the watch and wait option. Even if the doctors had recommeded it, I would have insisted that they take some sort of action because doing nothing scared me much more than either surgery or radiation. For me the worst part of being diagnosed was the sudden loss of control. When I heard "brain tumor," it was as if I suddenly had a powerful enemy that I couldn't see or fight. Being able to make the decision to smack the rotten thing with a hefty dose of x-rays (or hack it to bits, had I gone the surgery route), was a way of getting back some control and taking the fight to the enemy. It feels very good to think that I've hurt the tumor worse than it has hurt me. Like smashing the bee that stung you.

[Robquinn9]

As the spouse of someone who had a 2.8 x 2.5 rt side AN removed on 3/13/06, what I can offer up is to get as knowledgebale as you can about your options and surround yourself with a support network that is equally in the know. 

--This forum is a Godsend and really put my wife at ease just before her surgery; to be able to read and correspond with those that have been through this is just AMAZING
--Ask a lot of questions of your doctor(s) - nothing is out of bounds
--Make sure your support network knows as much as you do if not more
--Find an advocate to attend appointments with you for that 2nd set of ears
--If surgery is the route to take, plan your recovery out (child care, meals, home assistance, etc.)

Above all, there is HOPE and much "positivity" to be had.  Stay strong and get your thoughts out there.  Coming to grips with this is hard, but you can get through this!!

My wife is getting better each day.  It sounds cliche but it is so true. 

[thecakes]

   Welcome,  this is great.  As all your questions, Vent or whatever.  We hear you.

[min2]

Hi I am very new to this forum. I was dg with An which is 1.5 x2.2cm.  They found it through and CT scan.  I complained about headaches to my doctor for over two years.  so she sugested to have a CT scan and see what going on. well, they seen a tummor,waited 8 months to see a neruo specaliest, seen him, it bengin he told me,  I have to go for a aduiogram this may 3 and still waiting for a phone call for appoint to have MRI. Once that done,  boy, more wating to have consultions to see what options are for me. After that more wainting maybe  :-\  I have all the sympitons dizz, ringing in the ear, and the balance thing . ..  Anyways, welcome to Canada. we have Doc and Nurse shortages. And my Doc wont percribe anything for my Headaces ( since the past two years ) she is to reulagtated by goverment and she don,t like to give out controlled medications. She told me that I have  to wait and see what the MRI and specalist see the test ,  But in the mean time,  :'(  She ( Doc )  thinks the headaches arent assoicated with the tummor . I am all waited out???