would like see simlar tumor symptoms and size outcomes with all treatment option

[doinoc]

I'm new to this forum and have recently started to read more stories.  My tumor was discovered in Jan of 02 as a small .07mm and have been w/w since.  Last Sept my Dr says its time to think intervention as it has consistantly and steadily grown to 1.6cm.  In my first few years of check ups my Dr wasn't a great fan of radiation but now was suggesting to see a dr for more info as an option for me since i was hesitient on surgery(who wouldn't be).  My first symtoms were unsteadiness and dizziness and fullness in ear.  Thought it was ear infection.  looking back i had spells of dizziness ever so slightly for at least a year prior to diagnose.  2 years later I woke up one morning with my hearing just about gone and since then my audio....says no useful hearing at all. So my symtoms now are unsteadiness that comes and goes throughout the day somedays better then others.  no hearing in left(side of tumor) facial tingling and numbness to touch around ear,and unbelievable tinnitus....maddening some days. fatigue(i' was a pretty crazy active person)
Other circumstances ...my hubby not always dependable as a caretaker since he has illness that affects him on and off. (I'm usually his caretker) I'm also facing eventual surgery on my neck for spurs that affecting my nerves to my hand. I love my job and affraid with surgery i might not be able to go back....I'm a hairstylist for children only....awesome kids..love them...and if surgery doesnt have good outcome i don't know if i could continue.  The unsteadiness hasn't been too much an issue with my work(I would never put my kids in danger)  until more recently I've had to step away from time to time.  SO ..i'm wondering if radiation is the way for me to go considerering all my circumstances but want to see how it has affected others when balance was the main symtom.  My Dr.'s are  Thomas Willcox, surgeon and DR David Andrews Neuro radiation at Jefferson University in PHilly PA.   any info on them or has anyone had treatment by them.  Help my out guys...my fellow 1 in a 100,000  club(we should be so lucky with the lottery)
Deb

[Kaybo]

Hi Deb and welcome!
I didn't have a tumor anywhere near the size of yours but I wanted to welcome you to this group!  I'm sure others will come along later that can help you more.  Just know that whatever happens, you WILL still be able to do anything you put your mind to and SHOULD be able to go back to your previous occupation after treatment.  I even had a stroke and i went back to teaching 1st graders - I have 3 girlies of my own now and run after them but taught for 5 years after my AN surgery - very active and high energy job!!   

K

[Keeping Up]

Welcome - I too have a small AN and am in W&W (I was only diagnosed last December).  It is very encouraging to se eyou have avoided treatment for so many years - congratulations.

So, I am not in a great position to comment since I am so new and haven't had any treatment.

However, I read research studies (well, actually most of the time excerpts of research studies).  I found this one recently and it seems to fit you relatively well - so it may be well worth raising the nature of the study with your ENT, neurosurgeon and radiosurgeon.

Here is a link

http://www3.interscience.wiley.com/journal/121605740/abstract?CRETRY=1&SRETRY=0

The premise is that a very small population of patients who had no serviceable hearing (which it appears fits your description) have fewer balance issues post surgery as compared to radiation given appropriate recovery.  Again very small population, but it would be interesting to learn if there is any merit to the claim.

One of the authors is a common name I see around here - NYU - John Golfinos - which, for me, at least adds a bit of reliability.

It mightn't be a valid claim but is an interesting discussion point, especially since balance issues is one of your key concerns.

Welcome, and good luck.

Ann

[sgerrard]

SO ..i'm wondering if radiation is the way for me to go considering all my circumstances but want to see how it has affected others when balance was the main symptom.

Radiation isn't much help with balance issues - it doesn't normally take out the balance nerve, so a partially working nerve may keep on causing issues. It is worth getting vestibular lab testing, which can give a pretty good measure of the status of your AN side balance nerve. If it is still pretty good, or already pretty far gone, radiation can work out well. If it is hanging in the middle, it is something to think about.

I have a little bit of dysfunction on the left side, but it is so mild that it hasn't created any real issues for me. I do tend to put my hand up on door jambs when rounding corners, to avoid banging into them.

Steve

[doinoc]

Welcome - I too have a small AN and am in W&W (I was only diagnosed last December).  It is very encouraging to se eyou have avoided treatment for so many years - congratulations.

So, I am not in a great position to comment since I am so new and haven't had any treatment.

However, I read research studies (well, actually most of the time excerpts of research studies).  I found this one recently and it seems to fit you relatively well - so it may be well worth raising the nature of the study with your ENT, neurosurgeon and radiosurgeon.

Here is a link

http://www3.interscience.wiley.com/journal/121605740/abstract?CRETRY=1&SRETRY=0

The premise is that a very small population of patients who had no serviceable hearing (which it appears fits your description) have fewer balance issues post surgery as compared to radiation given appropriate recovery.  Again very small population, but it would be interesting to learn if there is any merit to the claim.

One of the authors is a common name I see around here - NYU - John Golfinos - which, for me, at least adds a bit of reliability.

It mightn't be a valid claim but is an interesting discussion point, especially since balance issues is one of your key concerns.

Welcome, and good luck.

Ann

Thanks Keepin up but the link wouldn't go through for me...keeps saying error...I wasn't as privvy to the balanc issue and radiation as much as i should have been.

[EJTampa]

Thanks Keepin up but the link wouldn't go through for me...keeps saying error.

I won't go too deeply into why the link didn't work, but it has to do with setting "cookies".
 
First, go to http://www3.interscience.wiley.com  That will set the cookie.
 
Then you should be able to click on the link to the article and it should work fine:
 
http://www3.interscience.wiley.com/journal/121605740/abstract?CRETRY=1&SRETRY=0
 
It worked for me, give it a try.
 
Ernie