New with 3.8 cm AN

[arkansasfarmgirl]

Dr. David Semenoff is my neurosurgeon and Dr. Steven Parnes is my ENT. The surgery is at Albany Medical Center (Albany NY) Im not really sure which way they're going to do the surgery. Dr. Semenoff wants to go translab and Dr Parnes wants to go retrosigmoid. I know the pros and cons to both. I guess whichever way will least affect the trigeminal nerve would be the way I would want. The way I look at it is you cant see deafness, you can see a bells palsy. That sounds so vain doesnt it!

Don't feel like the lone ranger with the vanity thing.     If you look at my post under the "inquiries" board, you'll see how I promptly inserted foot directly into mouth in my very first post here.  LOL  And yet everyone was still very understanding of where I was coming from, even as they slapped my wrist...

I'm 34 and have 2 young kids, the baby is 3 months old now.   With the exception of a round with Bell's Palsy 10 years ago, I've always taken my looks for granted.  I told my mom the other day that I'm going to want to cry if I end up with gray hair from this experience.     She said that at least I'm blond and it's easy to cover.  haha    I too have a large tumor--4.5 cm at the time of the MRI.  I know that there is a very good chance that I'll have at least *some* facial nerve problems, hopefully temporary.  I told my husband just give me some sunglasses and duct tape and I'll be good to go.   

My surgery is the 19th of this month and it's a strange feeling to look in the mirror and know that these could be the last days that I look and see ME.  That didn't stop me from ordering some really expensive wrinkle cream the other day though!!  I'm starting to get faint laugh crinkles around my eyes and I DON'T LIKE IT.   


Vonda

[calimama]

Hi Alicia,

Sorry to meet you this way, but glad you found this great site, with wonderful people to help you through this.

SSD is not so bad, although you will probably find you appreciate the "quieter" places in life a lot more if/when you lose your hearing on one side (at least if you have tinnitus, which i think is worse than the deafnesses).

And you are not vain at all to be more concerned with face and hearing. I don't think anyone here would fault you for being concerned about your face. Hopefully you can avoid this though, as many do. It is unsettling, and you are so young.

Hope most of all that you have peace in your decision, and that it comes and goes fast so you can get with your life and hopefully feel better...headaches and vomiting does not sound fun. At least you know what it is now, and hopefully all the nurses in the hospital will spoil you silly because you are a nurse.

Good luck and keep smiling.

Trish

[marguerite]

wow - that's pretty amazing you didn't have hearing issues. i just assumed everyone did. after reading the replies i see that's not the case. i saw susan tedeschi last friday in baltimore, and although, i've seen her twice before and thinks she's awesome, i think that was my last concert for quite some time. my an ear throbbed the whole time. even w/ear plugs and my hand over right ear, it was painful. personally, i think that's why i have an, b/c of close to 100 concerts. good memories though! afterthought ... i did see mindy smith in annapolis on holloween, and i think b/c it was just her on stage, no drums/bass, i didn't have any problems.

good luck w/your surgery next week alicia. pls post soon and let us know of your progress! and good for you for posting so quickly. i'm a late bloomer.

[MAlegant]

The day before my surgery I had to get my driver's license renewed since I didn't know when I would be able to do that and it was expiring.  I smiled so BIG that the technician thought I was nuts.  I figured it might be the last time in a long time that I would have that smile.  (It's still here, mostly)
Best,
Marci

[1cANAdian]

Hello Alicia,

A belated welcome to the forum!  Best wishes to you on your up-coming surgery.

You've seen that variability is the constant with symptoms for acoustic neuroma tumors.  I'll add to that a bit more.  My tumor is over 4 cm, yet my hearing is quite good, and I've not had the nauseau and vertigo issues that many others have had (thank goodness)  But I have had ringing in my ear for a number of years, and most lately facial pain and numbness.  Throw in the odd drool issue and some occassional strange feelings in my skull (I have yet to describe them accurately, even to myself - sort of mini-vibrations in the rear & lower part of the head).

Post-op, that variability will also be the constant, as you'll have noticed as you skim through the various threads here on the forum. 

Stay postive.   Lean on your friends & family, both at home and here on the discussion forum.  Stay positive. 

Again, best wishes for your upcoming procedure and recovery!

[Pembo]

Alicia, Your story sounds like mine, lots of symptoms that can be blamed on something else but when put together it is an AN. OF course you don't put it together until you have a huge thing in your head that needs surgery.  Stay strong....

and like Marci I had my drivers license pic taken a few days before surgery with a big smile unfortunately I had to get it renewed this year and that big smile has not completely returned....but it's me.

[ppearl214]

Hi Alicia,

I hope you don't mind, I made a new topic out of your post, using the magic wand they give to moderators. That way more people will see it.

geesh! Remind me to power up my magic wand... so much use lately, it's running outta juice!


Hi Alicia,

well, I can see everyone is doing the usual.... open arms for you and your arrival here.  As you can see, vast array of AN patients, locations, treatment options, etc. I just wanted to extend a "welcome" to you... take your time, pls feel free to use the "search option" (top left) for specific inquiries... but, most of all.... remember that we are here for you.

Again, welcome!
Phyl

[Debbi]

Hi Alicia-

And a belated welcome!  You've definitley got a whopper of a booger.  Not that winning the brain booger lottery is what any of us wants!   

I can't tell you that I don't miss my hearing sometimes, but it really isn't so bad.  You DO learn to appreciate the quieter places in your life.  And, in my case, I'm kind of glad I am past the age of "clubbing" so that I don't have to deal with that noise level.  As for facial issues - well, all of us who have had them will tell you that there isn't much fun about that.  But, it also isn't so bad either.  I'm slightly past six months post op and I have regained a pretty decent smile, atlhough my eye, chin, forehead and lower lip don't work much.  And, my smile doesn't look the same as before - but my husband thinks my crooked smile is quite sexy (am I allowed to say that?) and that sure helps!

I guess what I'd say to you is - learn as much as you can about what could happen, but then try not to obsess too much about it.  Trust your doctors, and also trust that you, like all of us, have an amazing capacity to deal with whatever life dishes out.  And, while the complications that some of us have had tend to stand out, there are SO MANY people who have surgery, recover and go on about their lives.  Have faith.

Sending you prayers and good wishes,
Debbi