Newly Diagnosed, Watch and Wait for now.

[Tomo]

Amazing site, wish a few physician would read and understand that small tumors can and do cause symptoms!

     My ordeal started in early January 2013 with debilitating vertigo which was misdiagnosed as new onset MS even though the MRI identified a small 3-6 mm AN in right IAC. The neurologist insisted that AN never cause symptoms until much larger and started me on high dose steroids (1000 mg Solumedrol IV daily) which after 4 days I was admitted to the ICU and needed meds to keep my heart beating and maintain blood pressure.  Thankfully, I do not have MS but local doctors keep telling me small AN do not cause symptoms.  Yeah Right.  After additional testing (hearing, VNG and repeat MRI) the local experts have concluded that it is an AN and "may" be the source of my hearing loss, tinnitus, vertigo and balance problems. 

     I met with Dr DeMonte (MD Anderson) in late February and learned that not all MRI's are the same and I had a thick slice MRI's, not optimal for AN sizing, and am scheduled for a repeat MRI and hearing test on 6/13/13. 

     I understand these tumors grow really slow and I am okay with watching and waiting.  The tinnitus has gotten louder and when I walk I can hear a hollow sound with each step.  Most days I walk like I am drunk and have to focus on keeping up right and not falling. 

     For those of you that have been dealing with this...any pointers to managing these symptoms better?  I have been doing vestibular rehab exercises and I have improved my balance, especially in the dark. 

[arizonajack]

Welcome to the club that nobody wants to be in.

My suggestion is to treat your AN with some urgency.

Sure, they grow slowly, and sometimes not at all. Trouble is, regardless of growth or no growth they continue to eat away at the nerve and waiting increases the risk of complete loss of hearing on the AN side.

Many of us have experienced that even with small ANs.

Small ANs are often good candidates for radiation.

Do your research.

Read about the experiences of others.

Then decide what you want to do.


How much hearing have you lost so far?

[jsanders1379]

I had a repeat MRI 6 mo. after diagnosis & mine had grown 50% in one of its dimensions(with no increase in symptoms), so they can grow rapidly...

[Tomo]

      Good point arizonajack, I will keep that in mind.  I have a 30db loss in the AN side with 80%word recognition, I do think that has gotten worse though over the last couple of months.  The tinnitus at times is so loud that I have to turn on the TV for background noise to go to sleep.  I have been doing a lot of reading and maybe I misunderstood the radiation treatment???  I thought that there is a higher risk of fusing the facial nerve and vestibular nerve together and if future surgery was needed patients are more likely to get damage and paralysis of facial nerve.  Guess I better go review the literature again:)     

[RachelSta]

I agree with ArizonaJack - my AN is relatively small per my MRI (about 10 mmx6mm) which was taken in March. At that time my hearing was "class A" with about 20db hearing loss and 70-80% word recognition (2 different tests). 2 months later, I have 0% word recognition and 70db hearing loss. My surgery is May 29.

Rachel

[arizonajack]

    I have been doing a lot of reading and maybe I misunderstood the radiation treatment???  I thought that there is a higher risk of fusing the facial nerve and vestibular nerve together

I haven't come across that anywhere.

if future surgery was needed patients are more likely to get damage and paralysis of facial nerve.

More likely?

No.

Radiation treatment has a very high success rate including preservation of hearing in many cases.

Here's an article that compares all three options: radiation, surgery, observation. What is important about this article is that it isn't a study in itself but a review of many studies by the top specialists in the field and involving many thousands of AN patients.

http://thejns.org/doi/pdf/10.3171/2012.6.FOCUS12192

As for hearing loss, I knew I was developing hearing problems for a couple of years and thought it was just age. I procrastinated and one day (Dec 2011) I put the phone up to my right ear (I always used the left) and got the shock of my life. My friend on the other end sounded like a squeaky little far away mouse and the audiologist said that hearing in that ear was no longer "serviceable." Took a while to run through the hoops at the VA but I finally got my MRI in Apr 2012 revealing a 3mm x 4mm x 9mm AN. Since my hearing was mostly gone on that side and the tumor was small I agree to watch and wait with my next MRI scheduled for Oct 2012. At my Oct MRI the tumor had grown to 4mm x 5mm x 12mm (about 20% in 6 months) and when I put the phone up to my right ear there was nothing. Hearing on the AN side 100% gone.

My experience (and Rachel's) illustrate just how fast these insidious little buggers can do damage.

I'm not pushing any particular remedy. Radiation might be right for you. Surgery might be right for you. Depends on a lot of variables. And it's gotta be your decision.

But based on what I have learned in the past year, watch and wait should be more like watch and act.

[PaulW]

Yes small AN's can cause problems..

Watching and waiting is a reasonable option for you as your AN is small.
Some AN's never grow, especially the small ones located within the IAC.
A period of observation is often used to help predict whether your tumour is one of those that may never need treatment.
Watch and Wait often results in deafness in the AN ear over long periods of time and that is a risk even if the tumour never grows.

Proactive treatment of the AN can also cause hearing loss and complications.

All of this makes a treatment or management choice a personal one.

Hearing preservation rates in Watch and Wait are actually pretty high.

But I wasn't going to die wondering if I had lost my hearing in Watch and Wait, if I had been treated with GK or CK proactively would I have saved my hearing?
The answer to that we will never know.


   

[coolgrandma]

Well, this is my first post and I am really finding all of the remarks interesting and valuable.  I am in the watch and wait status.  I started with some hearing loss in both ears around a year and a half ago-mostly the right ear.  My mother died unexpectedly in January of this year and I noticed while at the hospital that I was really having trouble understanding people on my right side.  I went back to the hearing aid center and they sent the right hearing aid back.  After I got it back-I went in twice more to have it "raised."  The third time they re-tested me and found I have "0" percent voice recognition in the right ear.  They told me to put up that hearing aid as it would no longer help me.  They sent me to a specialist and he then sent me to a surgeon.  I was tested for the BAHA and had the surgery on May 30th.  They called me the day before and said they had gotten my MRI back and that I had a small AN.  They said we would check it again in 6 months.  Does this sound right?  I am having small balance problems.  Just got home from the surgeon and the site is infected.  It feels like my head is on fire and I am really sore and tired.  (sorry to sound whiny). He gave me a prescription for an ointment and oral antibiotics.  Is this the way it goes for other people.  Has anyone tried ice to stop the burning feeling? Would love some input from others going through this.
 

[Nannybee]

Welcome to the club Tomo. ANs are so rare, that before I had one, the only experience I had with them in my medical training was in the form of a few pages in a textbook. As a medical professional myself, AN was not even on my radar when I was having that first MRI. In speaking with my colleagues who are family practice providers, little is known, they are learning a lot from having me as a partner and seeing me walk into the wall when I quickly come out of an exam room and turn to walk down the hall or when I go to sit at my desk and completely miss the chair! They are beginning to understand that if its a rainy day, better clear the bathroom when they see me coming because I will be nauseous from the movement of the windshield wipers on my way to work.
For those who tell me everything happens for a reason, maybe my future lies in lecturing on AN at medical conferences!