Recently diagnosed

[Dennis]

Hi there,

I would like to introduce myself. I'm Dennis, 33 years old and I am from Holland in Europe. 3 weeks ago was diagnoses with an AN left side. The size is 9 x 12 mm. It was a great shock for me to hear that there is a tumor in my head. The symptoms I have are a little hearingloss and titinus. My hearing is still there for 70-80%. That is also the reason my doctor advised me to watch and wait. He suggested to do an other MRI within 6 months.

I am so glad i found this forum. Everyone seems so supportive here. And there is so much information on the anworld website!

My greatest fear is that I will lose my hearing in my left ear. I'm so scared of that. That's why I am studying different options of radiation. I am also very interested in others opinions: should I wait, or should I do radiation? And what type of radiation?

Thank you all very much for your advises!!

[Jim Scott]

Hi, Dennis - and welcome!

I regret that an acoustic neuroma diagnosis brought you here but since it has, I'm glad you found us. - and thanks for the kind words.

As you know, your AN is small so observation ('watch-and-wait') is a practical choice at this time.   However, if the next MRI does indicate growth, you will want to seriously consider addressing the tumor sooner rather than later.  Radiation will very likely be a viable option for you (your doctor will decide if that is the case) and there are various forms (your doctor may suggest one over another).  Radiation treatment does not usually affect hearing so whatever you have now will likely remain, post-radiation.  This means that, should your hearing decrease in the next few months, you would want to urgently consider going ahead with radiation treatment to address the AN.  This assumes that your doctor agrees that you are a good 'candidate' for irradiation.  Although it sounds scary, being SSD (Single Side Deaf) isn't the end of the world, as I and others can attest.  However, with 70-80% of your hearing intact, I doubt you have to worry about losing (all) your hearing in one ear and I'm sure other posters will be along soon to elaborate on the radiation procedures available to you.

Jim 

[nftwoed]

Dennis;
  No Dr here, but at 33 years old, it seems to me the logical outcome of the AN is growth at some time.
  If this were my body, I would opt for Tx; Probably radiation, or mid fossa surgery before you lose more hearing.
  Of course, it is known a very small AN which isn't growing can take out all hearing in a wink by shutting off the blood supply to the cochlea or auditory nerve.
  Whichever; This said, is a non Dr. feeling and of course, the decisions are between you and your Dr.
  You've quite a bit of good hearing to save. Your fear of losing it is very understandable.
  Best wishes to you...

[chrisransom]

Dennis - welcome to the forum.  I wish you were here under better circumstances.  I was recently diagnosed (January 2011) with AN but I have very minimal symptoms - tinnitus, fullness in my ear (feel like I have water stuck in my after - like after swimming).  No loss of hearing, no facial issues, no dizziness). 

Use this forum to learn as much as you can so you can make the best decision for you.  I have chosen to watch-and-wait because of my minimal symptoms.  My next MRI should be in June and I'll also get another hearing test.  If I see growth or have noticeable hearing loss then I'll have to consider the other options.  But I agree with nftwoed - watch and wait is a gamble and you could have very sudden earing loss (as could I) or other symptoms.  But my tolerance for the risk is high right now so that is the choice I've made.  All I can say is learn learn learn -- it has certainly helped me.

Good luck and keep us posted on your progress.

Chris

[CHD63]

Hi Dennis and welcome to this forum .....

Although being diagnosed with an AN can be a shock, you are doing the wise thing to gather as much information as you can before making a decision.

Two things:  1) the treatment you choose is your decision, not doctors, friends, or family.  2) find the most experienced medical professionals you can find, specifically with vast experience in treating acoustic neuromas.

Bear in mind that if you choose to watch and wait, your hearing most likely will not get any better than it is now and indeed it may deteriorate further the longer you wait.  In addition to MRI scans, regular audiograms to check your hearing should be done if you choose to wait.

Many thoughts.  Clarice

[Keeping Up]

Hello Dennis

I am a fellow W&W and was 36 years old at diagnosis 2.5 years ago - my tumor is smaller than your tumor.

I chose not to go with any treatment, and re-scan as suggested by my doctors until growth is noted, acknowledging the real risk to hearing loss.  My hearing is about 30 PTA (pure tone average) so currently rated a mild hearing loss.  

Why???  

1) Research suggests that many of these tumors will not grow - some research in Canada (I am Canadian) and the UK suggests 65% (to 70%) of these tumors (typically smaller ones) will show no growth over the 10 year researched period.  I could make 10 years (or more!) without any need for serious intervention.  Ten years from now the treatment of ANs could be substantially better than today - improve the 'quality of life' post-treatment.  Hearing will continue to deteriorate so it is a risk which I have accepted.

2) Gamma Knife (didn't consult Cyberknife as no faciliaties near my home) treatment has shown to have a similar hearing rate outcome as W&W over a 5-10 year period (i.e. your hearing won't necessarily be better off with radiation than just W&W).  You have do your research and consult with doctors to confirm what I have been told - these rates vary dramatically depending on the center performing the treatment (as well as the definition of preservation of hearing)

3) Surgery has a very poor success rate of hearing preservation (each doctor and each reserach study shows different results but I was told 20%).  [Good news - small tumors have a small risk of facial issues.]

4) I am a mother of four young children and very active.  I also work full time and just moved half way across Canada to a new job.  I am busy and don't really want to be laid up by any treatment.

5) The tumor is exceptionally small, intracanicular (ie not near the brain!) and causing me very little grief.  In general, I would describe it as asymptomatic (except hearing loss, tinnitus and occasional balance issues)

So, like someone else mentioned, it is a gamble or better put an informed decision.  None of the options are without risk and any decision you make will be right for you.  I am now 15 months since my last scan (heading for a scan in July - 18 months after my last MRI).  I wonder if it has grown but I don't worry too much about it.  I did a lot of reserach and saw the various specialists when I was first diagnosed.  If I see growth, I would more than likely choose surgery.  I am less afraid of hearing loss (single sided deaf) than chronic headaches/pain - so type of surgery would be left to the doctors but with the objective of minimizing any potential for long term pain.

See good doctors, ask questions, do a lot of research and you will decide the best course for you.  

Good luck,

Ann

[Dennis]

Thank you all for youre reactions. Its really very supportive. I have decided to get in contact with a radiation specialist, to hear his/her opinion. I will keep you all informed!

[LisaP]

Hi Dennis,

Welcome, I am too W&W for three years now, my AN is small and I am lucky that my hearing is good.  This forum is great and full of information.  Best wishes

LisP

[jenshere]

Dennis, I was diagnosed around two years ago. I woke up one morning and couldn't hear a thing out of my left ear. Was stone deaf for around 6 weeks and then the hearing gradually started coming back without any treatment whatsoever.  Don't freak out.  I get a follow up MRI each year to monitor the growth, but so far, so good.  I realize that I am fortunate to have regained my hearing, and that your outcome may not be the same as mine, but as long as the AN is small, take it one day at a time.

[G_Man]

Dennis
    Welcome and sorry you have the need to be here.  I too am W+W.  My tumor is smaller than yours.  I was diagnosed a little under 2 years ago, but I have had this tumor for a very long time.  The diagnosis just explained why I had symptoms.  Once I understood what this was it all began to make perfect sense.  So the bad news is you are in the club.  However, the good news is you found this place and all the wonderful folks within it.  Also, YOU HAVE TIME!  My first year I was a wreck because I had only the initial diagnosis.  Once I had my second MRI I was more comfortable with the situation.  The best advice I can give has basically already been given.  Utilize your ANA membership for the resource it is.  Phone a few of the members and hear their stories.  If you have a support group in your country and it's near you go there!!!  YOu are going to find that we all got a similar diagnosis (to some degree) but we are all different.  Utilize the collective strength you will find within this organization.  I'm going to the symposium in june.  Never really had a reason to go to Cincinnatti but I do now!
And lastly and most importantly, good luck and I wish you well
Glen

[LisaP]

Hi Dennis,

I am W&W for a little over 3 years now, Welcome and best wishes.  Lots of information here and people to talk with.

LisaP