Small AN

[mary1227]

My daughter, feeling helpless after I had yet another bout of vertigo, found this forum. I was so thankful to read things from those who totally understand me. I thought I was the only one with 'wonky head' etc. So, first of all, thank you for validating my feelings and the issues I am having.

My AN is very small - measured in mm rather than cm (it is about 4mm x 4mm). My ENT found it in August 08 and sent me to a neurotologist. He wanted to Wait and Watch (been reading about that). I was fine with that until the vertigo started. That was in November. It is simply ruining my life. I am a corporate trainier, and it is not acceptable for me to be standing in front of a class of adults and suddenly fall over because the room starts spinning.

The neurotologist sent me to a neurologist and I am taking fairly significant doses of valium and neurotin. They work most of the time - but not always. I have lost confidence in myself, because I am never sure when 'it' is going to happen.

I am wondering whether to have the vestibular nerve killed (to try to stop the spinning) or to go through with the surgery even though the AN is so tiny. I guess wheteher it is tiny or not, it is really messing up my life. Any experiences to share with me?

I want my life back.

[suboo73]

Hi Mary!  Welcome to the Forum - (But sorry you had to join the AN club!)
You will find such wonderful information here on this forum - aren't the folks just FANTASTIC?!
Sounds like your AN is small but 'mighty.'
Did you see this recent short discussion under "Watch & Wait?"  http://anausa.org/forum/index.php?topic=9219.0
I am sure that others will chime in to help you along this journey.

Good luck with the vertigo.  I have only had one episode, but it really scared me!
My thoughts and prayers to you and your family.

Sincerely,
Sue

[leapyrtwins]

Hi Mary and welcome to the forum.

I'm glad your daughter - and you - found us.

I can totally understand how your AN, small as it is, is impacting your life.  Watching and waiting is generally a very good option, but IMO when your symptoms start to get worse - or start to interfere enough with your life (as in your case) - it's time to do something about your AN. 

Radiation is usually an option with an AN this small.  Has anyone discussed that option with you?

I highly recommend contacting the ANA and asking them for their informational literature - it will explain all your options in easy to understand terms.

On a different note - ANs used to be measured in terms of cms, but the practice now is to measure them in mms.   

Jan

[cindyj]

Hello and welcome!  Yes, do check out the thread that Sue pointed you to.  Amy was very recently diagnosed and her tumor is about the same size as yours.  She too is struggling with what to do mainly because of the vertigo.  

Very sorry to hear of your suffering - while the tinnitus that so often comes w/ our AN's is very annoying, it is not debilitating like the vertigo is.  I had vertigo off and on for years prior to my diagnosis.  I would have severe episodes that would only last a few days, but I also had "mild" vertigo and/or the wonky head thing constantly.  Oddly enough, it wasn't until 2 years after developing the tinnitus, that I was diagnosed.  

It is such a tough decision that, unfortunately, only you can make.  But, we will listen and answer any questions that we can to help you along the way.

Take care,

Cindy

[EJTampa]

Hi Mary, and welcome to our little group!
 
I agree with Jan.  If your AN is now having a major impact on your life, then it is time to act.  I would consider both options, surgery and radiation, but make sure you express your concerns over your current vertigo episodes.  It is my understanding that radiation usually will not affect the vestibular nerver, which means your vertigo could continue.  I'm not a doctor, and I could be wrong, so check with someone who doesn't just play one on TV
 
Having the vestibular nerve killed is an option, but in many cases, that will take out the hearing nerve as well.  I also remember a case where someone had that done, but it was not successful (can't remember who it was now).  With surgery or radiation, they have a 50 to 70 percent chance of saving useful hearing (depending on the treatment option and the approach).  I am single side deaf (SSD) now, but am adjusting to it.  My surgery was on March 5th, and I'm returning to work today!
 
I guess the other option would be to wait a bit longer.  I had vertigo, but only for a few days, and then it passed.  I never went to the doctor for that symptom.  It was hearing loss and tinnitus that devloped later that got me.  Your vertigo "may" pass with time as the vestibular nerve becomes more involved with the tumor, but there is no way to be sure of that.
 
Ernie

[ppearl214]

Hi Mary and welcome.... good to have you here.

I can well relate to what you are enduring, as I ran into the same for a little while post radiation.  I worked with my neuro-onc re: the vertigo I was experiencing. Based on my research, I heard about the use of low dose (2mg) valium/2x day... and have been on Neurontin as well. He was also able to share with me some vestibular exercises (VERY easy) which you can also "search" here from the forum home page (check the "Balance" forum as well.... ).

Your AN is so very small.  Many treating docs are noting that if you feel symptomatic, you can act on treatment. I know you are at wit's end right now with the vertigo, but please research VERY carefully, esp. for an AN that small. There can also be other factors that could be bringing on the vertigo, so please make sure you rule everything out.

We're real good here about confidence boost! Just let us know... we are firm believers in "strength in numbers" and we're glad to help in any way we can.

Again, welcome!
Phyl

[sgerrard]

Welcome from me too, Mary.

I think you have already gotten the basic picture. I would add that going to a vestibular lab for testing can be helpful in identifying the extent and nature of the balance nerve dysfunction. You have to track moving dots, and they move you around a lot, and may actually try to induce the vertigo, but they are very caring and careful. It might help make clear what you could expect from waiting and trying exercises and medications, versus having the AN treated. 4mm is a baby AN, so I would not jump on surgery right away.

Steve

[Jim Scott]

Hi, Mary - and please accept yet another (belated) welcome to the site and the forum(s). 

I see that I'm way back in the welcoming committee line and, as frequently happens in situations like this, I can't add much useful advice other than what has already been offered.  Even though I had a relatively large AN, I never experienced vertigo, making me somewhat unqualified to make suggestions on exactly how to address it beyond what others have proposed.  That being the case, I'll simply offer my hopes and prayers that you can find a way to deal with the vertigo and that it will be an approach that is both uncomplicated and, ultimately, successful.

Jim

[southpaw]

Hi Mary,

Welcome.  I'm new here as well. Lot's of great people here with tons of good information. Hang in there, you're among friends. I know vertigo is no fun, I deal with occasional bouts of it myself.

Dave

[Tamara]

Hi, and welcome,
  Just one other suggestion for you.  Your AN was measured in August, and the vertigo started in November.  Has another MRI been done?  Though it is unusual, sometimes ANs grow significantly more than the 1mm/year which is average.  I can't recall who it was on this forum - believe it was sometime about a year ago - whose AN was quite a bit larger at surgery than it was only a few months earlier on MRI. 

  Maybe you could ask to have another MRI?

Best wishes,
Tamara

[CHD63]

Hi Mary .....

Just want to echo what the others are saying and to emphasize the importance of you alerting your medical professionals of the extent to which this is now interfering with your life.

I had three significant falls due to vertigo prior to my diagnosis ..... damaging not only my body, but my self-confidence, as well.  An MRI was done, which was read as negative.  It was not until my hearing suddenly diminished that another MRI was done 13 months later and discovered a 2 cm AN ..... so ANs (although rare) can grow rapidly.

Since surgery I have benefited greatly from first physical therapy and then vestibular therapy.  I agree with Steve that vestibular testing would be very beneficial to the decision-making process.

Clarice

[leapyrtwins]

.... so ANs (although rare) can grow rapidly.

Yes, they can and yes, it IS rare.

My diagnostic MRI showed my AN was 1.5 cm - and approximately 6 weeks later the docs doing my surgery said it was almost double that size.

I'm not sure if it was rapid growth or an inaccurate measurement on my MRI - and I'll probably never know.  But regardless, it's important to monitor ANs - and that's what most docs recommend.

I agree with Tamara's suggestion that you might want to consider another MRI.

Jan

[balluff]

HI Mary,

My hubby had  a 4 mm an found last July.  Found it because he thought he had a earache that wouldn't go away and after about 3 weeks they did MRI and found  a an.  The Doc' at the U of M said his was one of the smaller ones they have seen. Which make the decision process even harder.


Deciding what to do is a  very hard.
He was given all 3 options. A couple things we talked about was doing this surgery at his age (39) now vs doing X years down the road, we wouldn't know what his health might be then as he has other health issues as well. And then there was the whole recovery thing, we went with the idea that you recover faster when you are younger. Quality of life was a big issue for us, could he handle knowing that he had something growing in his head and he could wake up one day and not hear and know that he had a chance to do something about it.
The one recommendation I would give to you is ask ask ask questions.. then get that Dr's email and ask more questions if needed and get second and third opinions.


He ended up having the surgery mid fosa in Oct 2008, he was in the hospital only 4 days, and it took him about 3 months to get back to work full time. He still gets dizzy sometimes and the hearing is still adjusting.

best of luck.