Diagnosed with 1.5 cm acoustic neuroma

[Juan_Antonio]

Hi everybody.

I´m 36 years old. I´m from Spain but I have been living in Ireland since 2011. I have had tinnitus since then but after a couple of appointments with GP and a Specialist, I was told that the tinnitus was due to anxiety since I barely have hearing lost. Lately, every time I take the commuter to work, I feel a bit unbalanced which I though was because of anxiety as well.

Enjoying my vacation time in Spain, at my parents place, the tinnitus got worse so I decided to go for a MRI Scan on my own. I got the results of the RMI when I was back in Ireland. The outcome is I have an AN on my right ear which is 1.5 cm x 0.6 cm size. I don´t know where the third dimension of the AN is BTW.

I took the first flight to Spain again because I don´t trust the doctors in Ireland. I met the ENT who explained to me all the options avalaible. Tomorrow I´m having the appointment with the neurosurgeon who happens to be ENT specialist as well.

After reading a lot on the internet I think I prefer to go for surgery, since I´m still young and the size is not too big so there are more chances to preserve my facial nerve, even my hearing.

What scares me the most is to lose the facial nerve. But I´m afraid as well of having to undergo surgery more than one time. My parents don´t want me to go for surgery because they see me healthy. They think maybe the AN will stop growing eventually. My father just told me that maybe I have the AN all my life...

This is putting a lot of pressure on me because I feel my family don´t agree with my choice but I´d like to face this asap and forget it if possible, resuming my normal life.

My questions:

-Given my circumstances: size, no hearing lost, age... what would you do?
-Is it possible to resume the normal life? I have read in the postop forum people with fatigue. I love to play tennis and soccer and I´m afraid to lose all that.
-Do you know any famous people (apart from Mark Ruffalo) who has overcome this disease? Any athlete?
-How can I deal with this family matter?
-What are the questions I must ask to the neurosurgeon tomorrow?
-Are my fears about recurring growth justified?

He is 40 so I think maybe he is too young. He saved a friend of mine life when he operates her on a suddenly brain hemorrhage but, obviously, this is not the same.

I just started my journey, I guess. Thank You

[TexasSprinter]

Juan--sorry to hear about your diagnosis.  I was 43 when diagnosed with my AN in Sept. 2012.  I elected to have surgery rather than radiation, mainly because I wanted the tumor out of my head.  I could not stand the thought of the tumor staying in there for years.  Choosing whether to have radiation v. surgery is a difficult one, and what is the right decision for one person may be different for another.  Lots of people prefer radiation but that was not for me.  Other than hearing loss on the right side, I was blessed to have minimal post-surgery complications, including no facial nerve damage.  Outcomes are varied for different patients, but for me life definitely can continue (almost) like normal.  Best of luck to you in your decision.
Scott

[Ruthie Mac]

Hi Juan,
So sorry you're going through this...deciding on treatment is really hard - I spend 6 months researching (mine was 1x 1.6 cm). Talked to as many doctors as possible, as well as, other people who had AN's and read lots of the back posts on this site to see what other people chose and how they were doing. The Doctors were equally divided on surgery vs. radiation, and it seems that everybody's experience is unique with varied outcomes. But the good news is that so many people are doing well. My primary care doctor said I was confusing myself with too much research, but I don't believe that's possible. I strongly advise doing as much research as you can and reaching out to as many people as possible. I couldn't believe how nice all the Doctors were, especially those who were willing to give advice over the phone at no charge. I highly recommend the free phone consultation from House Institute in Los Angeles.

I ended up going with the advice of the Doctor that I felt the most connected to. I had Fractionated Radiation (4 sessions). It's only been 3 months but so far, so good. My hearing is still really good.
I had some fatigue during 1st month. I still have dizziness & some balance problems, which will hopefully go away soon. But I can still exercise, do yoga, golf & tennis.
Wishing you the Best in this journey...
Ruth

[ampeep]

Hi Juan,

Sorry to hear about your diagnosis.  I waited for 5 months, learned that my AN had grown so decided to have GK.  Let me tell you what my doctors said:

ENT who diagnosed my AN, said they rarely do surgery for small/medium ANs.

Neurosurgeon said for small/medium sized ANs he would recommend watching & waiting or having GK.  He would not recommend surgery (he does both).

Radiation oncologist, who was on the GK team said surgery is usually done for large ANs.

Can't tell you much about side effects since this is my 3rd day after GK; returned to work yesterday.

Main thing is to find out as much as you can about possible treatment options before deciding on what to do.

Good luck,
Keith

[v357139]

It is good to get several opinions, and find a doctor with alot of experience and a good record of success.  That increases your chances of a good result.  Ask the doctor about your specific concerns, like "what is my percent chance for good facial function (House Brackmann II or better)", and ask each doctor what their record is for facial function in ANs your size, how many they have done, etc.  After a few consults, you should have a certain level of comfort on facial preservation and the other things you ask about.  Best of luck and keep us posted.