Here I go.....

[Noodle]

I was diagnosed with an AN in on my (approx 2 cm) back on June 15, since then I have enjoyed reading all of your great information and spending WAY too much time on the internet!  I have surgery (translab) scheduled for August 28th and now that it is 2 weeks away, I am terrified.  I am a total control freak and finding this a very had situation to control.  Imagine that!  I just have to say though that the thing that puzzles me the most is that I am going to loose the hearing in my right ear but I will still hear ringing.  I guess also that you could call me vain and I will totally own up to that but did anyone else have trouble with loosing part of their hair?

Anyways, what are the top things that you took with and used the most at the hospital?

[suboo73]

Noodle,

Welcome to the AN Forum - you will find FANTASTIC FOLKS here, as i guess you already know!    [But sorry you had to join this club.]
Since i am (still) in Watch & Wait mode, i cannot answer your questions about surgery - there are several threads that have lists of things you might need/suggestions, but i will be darned - can't locate them myself just yet  - i will keep trying.  But i bet someone else will chime in and let you know!

In the meantime, i am sure you will get lots of GREAT responses to your questions - for the top things you should take to the hospital, i always hear chapstick!

Again - welcome - and prayers as you make your journey through surgery.  When and where will that be?  We can put the information on the AN Calendar.

Thoughts and more prayers.
Sincerely,

Sue

[mimoore]

Welcome Noodle,
I became a research nut too, I wasn't sure if I have an AN or a meniginoma, so I researched both. I too am a control freak but some things are out of your control and that is why knowledge is power and choosing the right method and doctor for you are so very important. I remember my neurosurgeon telling me all of the complications that could arise from surgery and I really didn't take those into account, aside from my hearing, so facial paralysis was a big shocker for me. He felt confident that that there was a big chance I would lose my hearing not facial function. I remember in the hospital ICU he looked at me and I could tell he was disappointed. I thought loosing my hearing was small potatoes compared to having a brain tumour. I had retrosigmond because my hearing was perfect but in the end I lost it and my facial function.
It has been 14 months and my face is improving nicely - not 100% but harder for people to notice when I grocery shop. Saying that many, many people have very successful outcomes without any issues. Really I would say mine was a successful outcome too I am alive aren't I and enjoying life to the fullest!
The only part that bothered me about the whole hair thing was when they shaved tiny areas for a CT prior to surgery, to map my brain, one was on top of my head and it stuck up forever while growing in. I got a cute diagonal forward haircut and it hid most of the incision and it really didn't take long for it to grow in. My hair does not grow directly over the incision and the hair that did come in came in kind of kinky - the only time I have seen it kinky like that is after someone has chemo.
The hopital - okay I downloaded soft soothing music for my ipod and mints blah blah blah and didn't use it. Honestly the only thing I would pack now is comfy jammies, ear plugs and body cream and tons of chapstick.  Oh and I bought an extra pillow.
Hope that helps - we are here for you - ask all the questions you need to.
Michelle  

[tenai98]

chapstick and chapsstick.....i did bring my own pjs but ended up more comforatable withe the hospital gowns....If ur hair is long it will cover the incision area til it grows back. My hair was somewhat short at time of surgery(april 7/09) and it has grown back in, which is kinda of sad as it now covers my battle scar.  I went into surgery very calm. My BP is usually high but the morning of surgery it was  below normal...Take it one day at a time and remember the first 3 days dont count. the best is to  get up and walk as soon as possible following surgery...
Best of luck.
JO

[Jim Scott]

Noodle ~

Hi, and welcome!  Although I'm sorry you have to deal with an acoustic neuroma and removal surgery, I'm glad you've found - and used - this site and the forums.  

I can totally empathize with your concerns about losing control.  I had the same emotions but I faced the reality that my huge AN was real and had to be taken care of.  I couldn't 'fix' it myself but a team of neurosurgeons and medical personnel, could.  That meant basically giving up control and allowing a series of doctors, nurses and technicians to poke and prod me, stick needels in me and generally do things I would rather have not had done to me, including the 9-hour surgery.  Still, I pushed through my apprehension, underwent the tests and the prep and came out of the surgery in pretty good shape, all things considered.   I'm sure you will, too.  

The loss of hearing is often unavoidable and it will be an adjustment.  Some AN patients do fine with unilateral hearing (I'm one of those) but if it's a problem for you, as it is for many, there are BAHA (Bone Anchored Hearing Aids) available that are very effective.  The tinnitus is another reality you may have to learn to live with, post-op.  I do and most AN patients can deal with it.  Not fun, but surmountable.  As for losing hair  - not to worry.   Besides, everyone has some measure of vanity.  I wore a hat the first two weeks post-op to hid my shaved spot.  The good news is that they only shave a small 'strip' of hair and not only can it be camouflaged, but it usually grows back quickly.  I'm a guy with a relatively short haircut and within a few weeks, my incision scar was hardly noticeable.  By six weeks, my barber was able to cut my hair in a way to cover the scar without doing anything funky.  By 8 weeks, the former bald spot was gone, replaced by new hair growth.  If you're female, even if you have a fairly short haircut, the shaved strip will be small and easily covered so your vanity will not be harmed.  Don't fret about this.  Really.

I took very little to the hospital.  I believe most folks over-pack and never use a lot of the things they assume they'll 'need'.  However, I may not be the best judge of what to bring to the hospital (except for Chap Stick) so I'll leave that question for others to answer.  Meanwhile, try to stay calm and focused and know that on your Big Day (August 28th) many folks you've never met in person will be thinking of you and praying for you as they send you good vibes. I'll be one of them.  

Jim

[Lyssa]

Noodle...
I am a complete control freak. I am now 6 months post-op (translab) and the hair thing is sort of a non issue. For the first 3 months the longer hair covers it up, and now I am just in the habit of pinning it back when I wear my hair up.

The chapstick is of utmost importance! I remember waking up in the recovery room and the nurse offering me vaseline for my lips, it was like the best experience of my life! I am a lip balm fiend, and the anesthesia really dries you out.

I had already lost 80% of my hearing before the surgery, so that wasn't really a concern for me, and to be honest... I kinda appreciate being able to tune the world out when I go to sleep now

I said from day one that facial paralysis would be OK with me, given the circumstances; but I didn't really think it would happen.  When I woke up, and the ENT visited me he said I might have a facial nerve tumour (they later confirmed it was an AN though). I asked him, what this meant, and if I would be "ok", he replied, "the question is, will your face be ok?" I was like 1 day post-op at this point and didn't really care what I looked like (you learn to really overcome your pride in the hospital, LOL). I was home 5 days later and at that point realized that half of my face literally wouldn't move. I was definitely discouraged after a few months of NO movement. Then, about 3 weeks ago I noticed some very slight movement in the corner of my mouth. Now, at just over 6 months most op, my mouth can almost create a symmetrical smile and I feel great!

It's VERY daunting at first, but to be completely honest... if I had to do it all again, I really think I would. It's not as bad as you think it is. Yes the hospital week sucks, and recovery sucks, but you end up with a great story to tell, a better perspective on life, and a cool scar!!! Plus, now I can tell people that someone has touched my brain... not many people can say that. I remember the surgeon saying to me "your brain looked good", I was like "do you think he's coming on to me?" My hubby laughed, LOL!

You will be ok, it's much easier on the other side I will be thinking of you on the 28th.

[msmaggie]

It is a very scary thing to contemplate.  For those of us who are overt or covert control freaks, it is especially difficult.  You will reach a point when you just give it over to your drs. and let go.  You can't survive this if you don't. 

Ditto on the chapstick, plus pj's that button, and your own pillow. I also brought those soft fuzzy socks because hospitals tend to be cold places.  Some people brought their ipods.  You will be doing a lot of sleeping and resting, so don't worry about things to do.  If you need assurance, keep posting!  We have been through it and will cheerfully hold your hand.  Good luck!

Priscilla

[salamander]

New slippers are a must at the hospital!!  It gave me a bit of a boost to show off my styling feet when walking each day in the hallway.

I did pack new pjs, but ended up wearing the hospital's gowns.  I did take some boxers to spare anyone the view that those gowns provide in the back 

I am not a chapstick girl, but totally needed my blistex.  I also had my daughter on standby with a continuous supply of ice chips from down the hall.

I was amazed at how little hair they actually shaved.  It was a strip behind my ear that was mostly covered up by my top longer layers.  I obsessed about hair and then it was a nonissue.  The hospital did provide cute little stocking caps.

Good luck!! 

Samantha

[Kathy M]

HI!  You're asking for info that will help you get yourself mentally ready and that's great!  I needed to know as much as possible, too, and about drove myself and folks around me nuts, but it's what I needed so that was that.

My hearing was really great before surgery.  Lost complete hearing after surgery, but in the scheme of things, that's just fine.  I'm adjusting OK and I'm waiting to see what technological improvements are made over time before I dive in and get a hearing device (or an implant).  The wait is the hardest part of the whole experience for me and you don't have much time between your diagnosis and surgery, so that's a really good thing.

I ditto all the things to take to the hospital - some folks have said previously that sunglasses helped because they were very light sensitive for a while, but I didn't suffer from that at all.  I love slipper socks so I bought some fun ones that made me smile looking at them.  I brought a really touchy feely blanket that was very soothing and my own pjs & pillow, too.  I took some things I never even thought about using once I got there - my IPOD, a book, a robe.  I did bring a journal for my family to write in and record some things that they wanted to be sure to remember (marking what they did during the long surgery, what the nurses and drs said when they came out and gave updates, and then once I was in the room, they kept track of visitors, milestones (my first walk was a big event!) and their own thoughts were journaled as well.  This has been a wonderful keepsake for my journey through this - I thought there was no way I would want to chronicle this, but turns out, it was such a powerful event in my life (and my family's) that I'm very glad to have it.

I wish you the very best of luck and I'll just bet you'll sail right through.  August 28th is my son's 24th birthday - nothing but good things about that day in my book.

Kathy

[msmaggie]

Great suggestions, Kathy!  I wish I had thought of a journal for my family.

Priscilla

[Syl]

Noodle:

I didn't take anything to the hospital. I agree with Jim about most folks overpacking. But, I do recommend a robe to keep your backside covered when the physical therapist comes around to get you walking.

As for the control issue..you do have control of your recovery. It's up to you how often you get your exercise that will help your balance and recovery along.

My hair was shoulder length and covered my bald spot pretty well. But if your hair is short, you can wear scarves.

Will be thinking about you on the 28th.

Syl

[tenai98]

speaking of scarves, where is the magic scarf?
JO

[Lilan]

I am pretty high-maintenance and had all kinds of ideas of what I'd need, and as with others wound up using very little of it in the hospital. But here's what I wanted:

1.) Lip balm -- to which I would add, make it unscented or very mild. I had brought some crazy vanilla-scented one, and I was rather sensitive right after surgery and the taste/smell made my stomach turn. Luckily they had plain chapstick in the hospital vending machines, which I replaced it with!

2.) Pajama bottoms or sweats. I stayed in gowns while there (just easier) but once I was walking, would slip on some capri-length PJ bottoms-only under the gown. Thanks to Nancy (NL) for giving me this idea! I just used their slipper-socks -- they had to come and unhook my leg massagers when I was getting up, then they'd just pop them right on, so I never even got out my slippers while there.

3.) Cleansing wipes for face/body, face cream and toothbrush/paste.

4.) Soft fleece blanket and small travel pillow. I really, really loved having both of these. It's hard to get comfortable, and having a different size/shaped pillow really helped -- I still use it now just to prop my head in different ways. The blanket I used around my shoulders, almost like a bed jacket, and then later for naps.

5.) Earplugs.

6.) Cell phone.

[cindyj]

Hi!  You've received all the advice you probably need...so I'll just welcome you and wish you the best in your surgery and recovery.  Please continue to ask questions as you think of them and we'll help as best we can.  Did someone mention chapstick

Cindy

[Vivian B.]

Hi Noodle,

I wanted to welcome you to the forum. I can't offer any advice on surgery as I am still W & W, but wanted to wish you good luck. As alsways there are many others that have already offered you great advice.

Lyssa, I like your story and philosophy. Very real and positive.

Vivian