Newbie who also could not find a post button

[skamper]

Thanks Alicia,
I just sent you an email and a picture of my girls and I!  I will let everyone know how my appt goes with Dr. Moore tomorrow. 
I have found that I slur my words more since finding out, my husband says I'm just stressed!  I guess it's true, I just need to slow down and take a deep breath.

Thanks everyone for keeping my spirits up these last couple of weeks, I don't know what I would have done without this forum.  Will keep you posted!
Love
Susan

[skamper]

Hello all,
Went to see Dr. Moore this morning for what I thought was going to be my balance and hearing test.  It was just the evaluation and to go over things.  The testing is scheduled for the 7th.  I can't believe how long that testing will take and what all they have to do.  I'm pretty sure I failed the very simple balance test though.  I couldn't even stand heal to toe with my eyes closed for more than 3 seconds before I tipped and had to put my foot out.  Of course the Doc was their so I didn't fall and caught me.  It was awful to see the look on my husbands face.  I think he had no idea I had lost so much of my balance already.  I can't believe your body can compensate for itself so well.
Kinda scared for all the testing, in a way, I don't know if I want to know how much of anything I've lost.  It's a scary feeling to think I could be deaf in one ear and not have ever noticed it, I actually feel stupid in a way.  How did I go so long and not realize any of this?  Could I have caught it sooner?  The doc said the tumor is the size of a golf ball and is really pushing on my facial nerve, which explains the numbness.  I think he suggesting it come out sooner than later.  I asked if waiting till June would be okay and he said he didn't know if we should really wait that long.  He told us to go home and check our calendars.  He did make it seem like the test results will make a difference too. 
Do they worry about things going wrong at this stage of the game?  Am I reading too much into this?  I guess it was just a little overwhelming to hear all the technical mumble jumble today.
Will keep everyone posted.
Happy New Year to everyone
Peace
Susan

[sgerrard]

Do they worry about things going wrong at this stage of the game? 

Hi Susan,

I don't think you are at risk for the sort of thing that would put you in the emergency room. But it does seem that the AN has already done some nerve damage, and that it is inclined to do some more. There is not much point in waiting around to see how bad it might get, particularly if it is hitting a facial nerve. Once you have done the tests and know where you stand, it makes sense to me to go ahead with treatment. If you are going to have treatment, then generally speaking, the sooner the better.

Don't fret about not catching it sooner. It is easy to chalk up many symptoms to aging, we have all done that. When we find that we need glasses to read our watch as we get older, we don't think "I must have a brain tumor," we just think the parts are starting to wear out.

Happy New Year and Peace to you as well.

Steve

[skamper]

Wow Steve, I just looked at the calendar, pretty impressive.  That's awesome how this group is so caring.  I like that everyone's anniversaries and upcoming things are on there.  I bet that helps people be more supportive.

Well, we celebrated my birthday a couple days early tonight.  My brother and his family were in town so we had cake and ice cream with them at my parents.  It got my mind off of things for ahwile.  My real birthday is Monday, I will be 41, I feel so old 

I will post more after my next appt for the hearing and balance tests.  Hopefully it won't be so bad.  The tests sound horrible!  Are they really that bad?  Anyone want to update with info if they've done them?  Thanks, Susan

[skamper]

Thanks Donnalynn,
That makes me feel a little better.  Of course we are in for more snow that same morning.  Great, like the foot of snow already out there isn't enough, more to come.  Hopefully I will still make it to my appt.  It's been so cold here, it's crazy.  It will take us months to get rid of this white stuff!!

Did anyone have actually ear pain in the an ear?  I've been noticing a dull pain in an ear since about last week sometime.  It sorta feels like an ear infection, but not all the time.  It feels likes it's in the outer part more so than in my ear.  Could this be something totally different and unrelated?

Thanks,
Susan

[alicia]

I had ear pain too...after the diagnosis!  Not sure if you are just more aware of it or if it is the crying!  Really.  The pain, twitching, and numbness could just be indicators of strain.  There are other nerves that are affected by this tumor that can cause pain...shooting pains...others will chime in.   

HAPPY BIRTHDAY

[CHD63]

Susan .....

I can remember suddenly developing ear pain after I learned the diagnosis.  So much so that my ENT gave me some cortisone drops to put in it until I had my neuro consult.  In my case, I am convinced it was a panic reaction and not actually a problem.  You need to have it checked, however.

Clarice

[skamper]

Thanks for the insight on the ear pain.  I sometimes think it's just because I now of these things, that I have all of it.  I know the pain is real, I just think I pushed it aside for so long and ignored it, or chalked up to something silly.  Usually I blame everything on sinus issues.  I guess that's not my case now. 
I did realize today that my numbness is to my scalp line on the right side.  I went to stratch my head while driving tonight and realized it felt numb.  I think I scared my 14 year old a little when I shouted, oh crap, my head is numb too.  She told me she better practice driving incase of an emergency and I might need to her too. She is so sweet and caring, I'm so scared to see how they will react to their mom being so sick and helpless after surgery.  My oldest is a sweetheart and it's going to break her heart!  My little one might not quite understand so much, that will be a blessing, she will just know I'm sick and need rest.  My middle one is tough, she will hold it in and try to act like she's find with it all and then will eventually breakdown.  I know my girls all too well.  They are my life and I love them.  I couldn't see my life worth living without them.  My hubby will be my rock, I know he will, he's scared, I know, but he will stay strong for the girls, after all, he's their daddy!!!
Okay, gotta go, tears have started to flow again!!!!  Sorry about the mushy stuff, I get that way now and again.
I hope to have answers Thursday after my tests if I don't get snowed in. 
I did enjoy my B-day today!!!!
Peace
Susan

[lawmama]

Susan,

I'm so sorry about your diagnosis.  I'm also a mother of two little children (3 1/2 and 6 1/2) and just had my AN surgically removed on 12/14 of this year.  It was a little scary for them, but I tried to tell them honestly what to expect while still being age-appropriate.  What kids really want to know is that you will be ok.  I don't know the ages of your children, but I bought my 6 1/2 year old a wonderful book about being in the hospital and what happens there.  I think it took away a lot of the fear of the unknown for her.  When I got home, she wanted to know where they put my IV and asked me if I got to hold the remote control that moves the bed.  She was also excited about bringing me breakfast in bed the first day I was home.  So sweet.

I completely understand wanting to shield your children from this, but you might be surprised at how well they take it.  Like I said, the most important thing is that you ARE going to be ok.  I think most of us went through an initial shock and mourning process after our diagnosis.  Once that passes and you are able to digest all of this, things will be better, I promise.  My prayers are with you and your family.

Lyn

[skamper]

Thanks Lyn,
That makes me feel much better.  My girls are 9, 13, and 14, so they are old enough to understand. 

I might have to reschedule my testing for Thursday.  School has already been cancelled for tomorrow and possibly the rest of the week.  It's going to be bitterly cold on Thursday with lots of blowing snow.  Windchill of -30.  I will let everyone know if I make it to my appt or reschedule.

Thanks again for all the continued prayers, it just makes me smile everytime someone writes me back that has been through the same exact emotions I'm going through.  I love this forum, sad I'm here, but glad I found you!!
Susan

[skamper]

So, results of today's testing!!

I have minimal hearing loss to the AN hearing.  The dr was quite impressed with that result.  I told I feel pressure in that hear all the time and a fullness.  She explained it's the size of the tumor pressing down on that nerve.

My balance nerve was another problem in itself.  I did pretty good standing and doing the simple test on the flat surface and then the cushion thing.  I got to the air in the ear with the google test and my AN ear pretty much had no response.  She said I was easily at 90% balance loss if not more.  When they did my good ear, I couldn't believe how dizzy you were suppose to get.  My AN ear did nothing.  She explained that the tumor is pressing on that nerve the most and probably wrapping on it.  The facial never so far is good, no lose of that yet.  The doctor was quite impressed that I get around as well as I do with no balance on that side.  She said she would have never suspected I had that much balance loss when she saw me walk and do the first test.  She said most people can't even pass the first one.  I guess that's good, after surgery I wouldn't have such a balance issues or the nausea she said that goes with losing balance suddenly.

Now to wait until the appt with Dr Moore on Feb 3.  Not sure what to do next.  Research more I guess?

Thanks to everyone for your continued support and prayers.  It made today a lot easier to handle the results I received..

The weather on the other hand, is out of this world.  -22 tonight as a temp.  Tomorrow makes the 3rd snow day for the kids, too cold for them to go out.

"I'm a trooper, I will get through this!!"
Susan

[alicia]

How similar could our results be?  Amazing

I am glad you made it there today!  Hopefully having another piece to the puzzle helps.  Now just keep busy so the Feb. does not seem so far away.  Maybe you'll find time to meet up with old friends...maybe some new ones too    Alicia

You will get through this!

[sgerrard]

Susan,

It sounds like your balance nerve has been fading away for awhile, and you have been gradually adjusting to it. That is good news, it means one less thing to deal with after treatment. I guess the question now is, can you save that hearing?

I hope it continues to go well.

Steve