Another AN case

[voron999]

Hello!

I am 48 year old, generally healthy, physically fit, male newbie from Madison WI on this forum.

Here is my MRI case as of 01/11/2017:

Impression: 1. 4 x 3 mm enhancing nodule in the left internal auditory canal, intimate with 8th cranial nerve, consistent with an acoustic neuroma. 2. Otherwise normal MRI of the brain.

I have had ear ringing for the last 5 years, on and off.
Attributed it to my few years worked as a factory worker without proper ear protections during my younger age.

The ringing became consistent during the last 1-2 years and this has been my new normal and I pretty much lived with it.
Hearing specialist told me it was pretty normal for my age and so I carried on.

Since about June 2016 I started having echo in my head, muffled hearing and uncomfortable internal head pressure.
It all started very abruptly. In fact, so abruptly that I rushed into ER to check my head for a possibly contusion issues (I coach kids in soccer and had a very hard "header" about 4 weeks prior). They did the CAT scan and found nothing fatally wrong with me and sent me home.

Shortly thereafter, the same hearing specialist checked me, prescribed a nasal steroid spray for my "allergy" that plugged my auditory canals into the middle ear  and sent me home. (allergy - a typical conclusion they do now days for just about anything; I digress...)

Meanwhile nothing changed with my symptoms, and I started searching the web on my own and one of the immediate source was this forum.
I called my PCP for an appointment and reported on my web search results.
I did a good sales job and she scheduled me for MRI for the very next day.
So here I am.

Next appointment is on March 6 to see ENT specialist at UW hospital and we go from there.
Unsure what is next but what I have now is not really ideal case and something must change.

I have OK days and not so good days and just trying to carry on as usually the best I can (job, working out, family, thinking about the spring ahead - garden/bees/etc).
Meanwhile I will be reading this forum, searching more, and listening to advice.
Thanks for reading!

[mac84]

Voron, the good news is that it's very small and you'll have plenty of time to simply watch and wait. No rush to do anything.

Hang in there and continue to ask questions and read all you can as you go through this. You'll find that once you get comfortable with the idea of the AN that it's just something else to get through. 
Cary

[voron999]

Voron, the good news is that it's very small and you'll have plenty of time to simply watch and wait. No rush to do anything.

Hang in there and continue to ask questions and read all you can as you go through this. You'll find that once you get comfortable with the idea of the AN that it's just something else to get through. 
Cary

Thanks!
It is small by the examples I see here.
Though, looks like the symptoms vary case by case.
Some people with large ANs don't even know they have them.
I have this tiny AN and yet I feel it well, like about now, while trying to work.
Could be worth still, I guess.

[Willbur]

Hi voron

Welcome to the club. I'm originally from Madison WI. My buddy works in the neurosurgeoy Dept at UW Hospital. They only do retrosigmoid according to him.  That is beneficial in your case since it is so small.

[voron999]

Hi voron

Welcome to the club. I'm originally from Madison WI. My buddy works in the neurosurgeoy Dept at UW Hospital. They only do retrosigmoid according to him.  That is beneficial in your case since it is so small.

Good to know, Willbur.
Thanks.

[jim j]

Dear Voron 99,     I am not an expert but I will let you know what I did. I first went to an ENT after my wife said I was going deaf. I had ringing in the ear for years and thought nothing of it. The ENT did a MRI along with test that check to see how much hearing has been lost. Thats important! It can be on the 8th cranial nerve but my ENT sent me to a Neurosurgeon ASAP mine was large 2.5cm x 4 cm x 7cm and pushing on brain stem. A neurosurgeon is the best to get to not an ENT as they do more of these surgeries then an ENT and know more about the nerves in the Brain cavity which that is where the nerves come from the ear into the skull and there is a fluid filled cavity that the nerves pass through to the brain stem. The 8th cranial nerve known as the  vestibulocochlear nerve lies next to the facial nerve and and is responsible for balance and hearing. Yes yours is small but you don't want it to grow and connect to the facial nerve. Usually when it is a small tumor they are very sticky hard to remove surgically. I had 11 hr surgery in NYC I ask the Surgeon to please leave my facial nerve in tact. He said he would try but the nerves are so delicate they are similar to a wet tissue paper. He completed the surgery I had lost my hearing and balance and as an Ironworker in NYC going up 50 floors was difficult. I was told to watch it as it might grow back and it did. In 12 years I had a 7x5x5 tumor again. So I went for Gamma Knife so to avoid surgery. I returned for my 6month checkup and i was told there was another piece that grew on my facial nerve on the brain stem. Well what do I do I thought research research that is what I did the first time. This is your life don't let anyone tell you it will be fine everyone is different. It's not fine. I lost my balance my hearing my job and still have that feeling like I got off the scrambler at a park I work with it but sometimes I can't go out to loud places and ride in a car looking around a lot gets me dizzy. Please take this serious it is. It effects your life forever.. Get the right Neurosurgeon not and ent. My last ENT in 2015 told me to wait if I did not do the GammaKnife I would be worse. I will say you need opinions from 3 neurosurgeons. Get a paper right down questions you need answered and what they say. Do not wait as if you get that facial nerve involved it is hard to look in the mirror and talk and more. So please get  3 opinions and help yourself from Dr's with a 4-5 star rating and does these surgeries every week. This is a Brain Tumor and does effect your brain. Some people get off lucky but I wasn't one of them so I hope you look and listen Good Luck Good Bless. I will be having microsurgery thats what they can do now less invasive. But I will loose my facial nerve and hope I can get rid of the terrible feeling in my head that never leaves.

[ANSydney]

All six MRIs measure the tumor differently. It's possible it has grown 2mm depending on the measurement you want to believe.

Citiview, I'm interested in your statement that "all six MRIs measure the tumor differently". Did you go to the same place for each measurement? What measurements were you given?

[sandyinwisconsin]

Hi,

I was treated in Madison by Dr. Steven Howard. I sent you a PM with my email.
Dr. Howard treats with radiation and it would be very worthwhile to meet
with him. He would probably see you ASAP instead of waiting until March.

Basically, the ENT will tell you the three options you have, surgery, radiation, or Watch and Wait.
Your tumor is so small, you don't have to rush into surgery, however it is better to radiate when
the tumors are small to help preserve any hearing you have. The larger they grow, the more
chance you will lose more hearing and possibly run into other problems with balance, etc.

Please send me a PM or email.

Thank you!

Sandy

[jim j]

sandyinwisconsin,
    I agree you need to go to the same MRI imaging place with the same machine I go to a place with a T2 machine as it gives better images. There are some T3 machine but the key is same place same radiologist. I was told for 12 years my tumor was fine yet every year it was 1mm bigger in 2 directions. When I asked it seems to be growing i was told it depends on who is reading it. Well a ruler is a ruler and if they can't measure and it is larger each time your tumor is growing. I let mine grow for 12 yrs and finally went to NYU and asked my first surgeon his opinion . I brought all my disc so he can look at them and not just a radiologist. He concluded it was growing and is at a point I need to do something. Lesson learned a neurosurgeon should be looking at the disc's not the reports. I was told they can be off by the MRI placed.  I was a  Superintendent in the construction field if I was off by by that many cm each wall built or tile installed i would have been fired. So Take your time don't rush it but go to at least 3 neurosurgeons for opinions. That is so important information to gather. It is your life and all Dr's are different. Good Luck

[voron999]

Thanks to all for the responses.
I will be digesting this forum for a while... 
Much to understand

Well, today was a so-so day.
The ringing was above average all the while I was trying to watch at the loosing Packers here...
Sad day today if you are a Packers fan.
But also I realized the ringing was actually getting through the TV noise (usually, the noise cancels out the tinnitus).
Moving along...

Quick questions to the experienced here - do you think (from your experience) regular exercise should help to preventively suppress and/or compensate for potentially worsening balance? 

Key word is preventively.
By exercise I mean - regularly walking, running, working out with kettle bells?
With these workouts one depends on balance a lot and so I imagine the brain must be regularly adapting and compensating for any ongoing losses.
This way the brain should be more resilient to what is potentially to come.

[mac84]

Voron, I run 20 miles a week and am convinced that this is what helped my brain compensate for the balance loss on that side.

[jim j]

Yes exercise does help and google this "Images for vestibular rehabilitation exercises patient ..."   I went for 6 months to Therapy but you can do it on your own. If you have good insurance and your Dr can write a prescript for Vestibular therapy you will benefit from it.  I still believe in at least 3 opinions from Neurosurgeons that read the disc themselves and not reports. good Luck

[voron999]

I am also noticing the ringing and head discomfort have some connection to the weather.
Today the ringing is above average, and the head discomfort reminds of itself.
Pretty sure this is connected to the weather swing - cold, high pressure system came here for a short stay.
Seems as if high external pressure creates more discomfort for me.

[voron999]

Well, finally made to the ENT specialist.
Short resume:
* I have a way to go yet before being too concerned (under 10mm is fine to wait-and-see he said)
* will check back in 6 months to see the rate of growth (the rate of growth - that is what to be concerned with)
* he up front discouraged me from doing radiation (GK) as at this point the potential side-affect on the hearing could out weight any gain for me (elimination of that annoying tinnitus in my case would be nice, but....);
* spoke about the permanent scarring caused by GK in the AN and I may want to wait just yet since there is no way back once that is done
* surgery - he could do it if I insisted; but he discouraged to be rushed
* regarding the tinnitus, echos, head discomfort he wants to consult another ENT specialist who works with such cases, but without invasive ways

In short, wait-and-see for me. At 48 I am young and healthy.
If can tolerate the symptoms, maybe should try to mitigate them for now and take the gradual path.
All for now.

[ANSydney]

Congratulations voron999. Of the three options, the best appears,  if you can, to be observation. Best outcome.