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Another AN case

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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:

--- Quote from: Citiview on January 21, 2017, 06:40:28 pm ---All six MRIs measure the tumor differently. It's possible it has grown 2mm depending on the measurement you want to believe.

--- End quote ---

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.

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