Surgery Decision

[leapyrtwins]

Just -

I don't think you told us where you are located.  It's possible some of us live not too far from you.  I've been thinking about your situation all afternoon and if you do have an AN and if you do decide on surgery and if you do need someone to be with you post op, I would be more than willing to be that someone.  I know it's a lot of "ifs" and you don't even know me - trust me, I'm NOT an ax murderer - but I just feel so bad that you don't have anyone to rely on in a situation like this.

I am so fortunate to have parents and a sister who live close to me and I couldn't have made it through my recovery without their support.  I have another sister and two brothers who live farther away, but the moral support they gave me was just incredible.  I know how truly lucky I am.

On the other hand, my best friend - from way back in college - lives in MA and has been through no less than six major surgeries.  Although her family members all live around her, none of them can be bothered to take her to and from the hospital, etc.  In fact, the last time she had surgery (outpatient) she actually took public transportation to the hospital and a taxi cab home     I had no idea she was in this kind of a situation, and didn't find out until long after the fact.  I've since told her if she needs me to let me know and I'll be there. 

We always tell our fellow forumites that we are there for them and I want you to know we truly are.  I can't speak for everyone else, but if there are forumites who live near you I'd imagine that at least some of them wouldn't mind helping you out.

Jan

[Kaybo]

WOW Jan!  Are you trying to be the angelic sister or what??  No, in all seriousness, that was a WONDERFUL offer.  I think I read at the end of Just's post that she was from Kansas?  Parts of Kansas are not too far from me and I would certainly help out any way I could also - I would just have to try to figure it all out for the girlies!  Let us know...

K

[Just Wondering]

I just finished watching the first NCAA semifinal and thought I would check this forum between games.  Jan and Kaybo your offers brought me to tears of which there have been many in the last two days.  There are truly angels among us! 

[Sue]

Still no new problems with me, either.   Except that I have a rotten cold, but that has nothing to do with my AN.

You, Just Wondering, are going to have a LOT of people worrying about you!!  We all feel sorry for your situation and wish we could help you.  You, on the other hand, have to help yourself, and you have hit Denial, number one on our "stages of grief", big time.  Sorry, but you DO have to find out what is wrong.  Maybe not an AN.  Whew! Off the hook on that one.  And it is preferable to use the dye, which will not hurt, sting, or anything.  If they didn't tell you that they were using it, you probably wouldn't even know the difference.  Trust us, we know these things.   Then after you have the proper diagnosis and get over denial, you can get to anger (punch that pillow, girl!), bargaining (if I don't talk on the cell phone ever again, it will go away (not!), Depression (Oh, I hope you don't stay long here!  Please don't jump back to denial - seek help if you need it...) and finally, acceptance (Okay, I have an AN.  Big fat deal. There are people worse off than me, that's for sure.) 

And then, as so many folks have said, you have treatment options.  It's best to keep on eye on the darn thing.  It is benign, but it's not friendly.  There can be consequences to ignoring this thing.  It doesn't bode well to have an AN pressing on your brain stem.  BUT, you don't even know if that's what you have yet.  So, with the strength of the ANA Forum having your back, you go to that appointment.  You lie there and listen to that MRI doing it's thing, and then be very happy that Modern Medicine is there to help you.   And we're here to help you too!  And believe me, you are stronger than you think you are.   

Sue in Vancouver WA   USA

 

[sgerrard]

I just finished watching the first NCAA semifinal and thought I would check this forum between games.

See? You're not that obsessed. You still recognize important things that need to be done. 

Steve

[cherrypiper]

 :)ok just wondering. here's what i did;

1. i had lost hearing over about 2 years, had no insurance to help me with it, was in my rt ear.

2. got insurance and got referred to ENT by PCD...............he verified i have no hearing in rt ear all though all the parts were there and moving.

3. the sent me to MRI 1- June 2007. they found a AN on my right audio (#7? and facial nerves#8?)

4.so its off to specialist ear surgeon here in Houston, who does another MRI........yep i got one about the size of a BIG almond growing along my nerves.........

5. the ENT and the Nero surgeon explain whats up . what are options, gamma knife , surgery to go get it out of head.

They the surgeons push neither way. I choose after talks with my son in law who is a Dr. the surgery. Gamma knife isn't as good on the first attempt, and if it doesn't kill all, then in 6 months you get to do the surgery anyway.


My surgery was Dec 3rd, 07. was in Intensive care 2 days, advanced care 1 day, normal 1 day then home.........

i don't remember much of first 2 or 3 weeks. BUT the first hospital did not do my legs right and i got a real big clot all the way down my leg from the knee to ankle.

it moved to my lung in 3 pieces. they still don't understand why i am here. Too Ornery my kids say.

but there are always risks. i have very little wrong with me, the tumor is gone, my rt eye is functional but not ok. it is very dry but i have drops, i cant wink on rt side but i can close it all the way to sleep.

my sinuses hurt on rt side, 3 months ago they didn't. i have found with eye Dr. and GP Dr help something that helps my eyes and my mental capacities.

when i go thru a long day i list to one side , my right, see i have no gyroscope working over there to keep me level. the more tired i am, the worse the pronblem................time takes time

i'm 16 months out of surgery and its little problems i have , my dentures don't fit cause rt side of face has sagged, but we are still looking at that as well as both the Transear, and the BAHA implants. One is about 1/3 the cost of the other though.........

hang in there and vent here when you need to

[lori67]

Just Wondering,

I can say with some certainty that Jan is not an ax murderer.  However, her kids say she's not a very good cook, so if you choose to let her help you out, you might want to post the number to the pizza delivery place where she can find it!   

Seriously though, I'm sure anyone here would be willing to help you out - it's just a matter of figuring out who lives near you.  We've all been in a position where we needed help and we know how hard it would have been if we didn't get any.

And, yes, good things can come of AN treatment - Steve even learned how to knit!!  The good thing for me was that I'm still here to continue driving my family and friends crazy for a good long time!!   

Lori

[leapyrtwins]

Just Wondering,

I'm sure anyone here would be willing to help you out - it's just a matter of figuring out who lives near you.  We've all been in a position where we needed help and we know how hard it would have been if we didn't get any.

That's exactly what I was trying to say, only Lori said it way better 

She's right about the cooking thing too.  My brother and his wife sent me a cookbook at Christmas time with recipes for Christmas cookies.  When I unwrapped it my daughter turned to my son and said "See, they know mom can't cook, too".  But, I can order out with the best of them so neither the kids nor I are exactly starving 

Seriously though, my offer wasn't made in jest.  If you need someone to be with you, just ask.

Although some of us (guilty as charged) like to joke around a lot on the forum it's mainly to take away the levity and seriousness of the situation.  It's also - at least for me - the way I communicate in my personal life.  Just ask my neurotologist who probably originally thought I was a crackpot - heck, he probably still does 

My point is, our humorous remarks doesn't mean we care any less or that we are insincere.  We mean what we say.

Jan

[Syl]

Just Wondering:

See, you are not alone. You've gotten such great advice from so many folks who have been through what's frightening the heck out of you.

An acoustic neuroma, if ignored, can have some serious consequences. Keep in mind that you have options. Surgery is one of the forms of treatment. You can have radiation, which has miminal down time. You can go right back to work after treatment with radiation.

Another option is to Watch and Wait. You can monitor the growth of the tumor with regular MRIs and may not need to have surgery or radiation. But you need to get this first MRI done to see where you stand. If you do have an AN, then you discuss the options with the Dr. and get second opinions if necessary.

But you need to act and remember that we are here for you.

Syl

[msmaggie]

Yes, we all obsessed and spent hours on the internet reading about it.  That's how most of us ended up on this forum  : .  It IS scary and the natural tendency is to dwell on this unheard of diagnosis.  My husband made a remark about me spending so much time researching it and I looked at him like he had just landed from Mars.  Now that you have done your research, time to find out w/the MRI...and the dye.  I'm not sure if I have seen anyone report ill effects from it.

You will be okay....really, you will!  Keep us informed on what you find out.  It sounds like your drs. are great so far!
Priscilla

[Rivergirl]

The human body is a marvelous thing, take something foreign introduced and it will get rid of it.........just drink lots of water after to help it get flushed out.  I think not knowing will eat away at you more than the having an MRI with contrast.  Good luck with your decision, it is all frightening when we hit a bump in the road.

[Just Wondering]

Good Friday Good News
I received a call from my ENT’s assistant today telling me the doctor did not see any tumors on my MRI.  When I left his office after the first visit, he said he wanted to see me in one month even though the MRI was scheduled for the next week and that I would hear from him sooner if there was a problem.  So the search for the cause of the tinnitus will continue although it is not really that bothersome unless there is total silence and the BPV exercises seem to be helping.

I would like to give you all a HUGE cyberhug for all of the support and concern shown for me on this forum.  All of you have made me believe again in the inherent goodness of people.  I recently retired from public service after 32 years and had become somewhat jaded.  To those of you who sent me personal messages and who graciously answered mine to them, I owe a debt of gratitude and gratefulness. 

[sgerrard]

That is good news, JW.

Don't feel like you have to leave just because it isn't an AN. As long as you have something strange going on in your head, you are welcome here.

Steve

[cin605]

  @ Steves comment...

[leapyrtwins]

JW -

that is absolutely wonderful news!!! 

I am so glad to hear it.  As Steve said, you are welcome to stick around if you want to; we'd be happy to have you.

Jan