Newly Diagnosed

[EStacy07]

Hi Everone

I've known for 3 weeks today that I have a 4.5 cm AN. I will have surgery on March 25. I am scared. I am only 24 yrs old and I have two children a 4 yr old boy and a 4 month old girl. Somedays are good for me and others are hard. I usually think about how March 25 could be my last day with my family. I kind of know what to expect bc I google like crazy and I have been reading a lot of posts on here.  My husband is in the Military so my doctor is a military ENT who trained at the house clinic in LA. I am also meeting with a civilan neurosurgeon on March 11 for a 2nd opinion.  Lately I keep thinking that I might be blind after this ordeal. Does anyone know if you can go blind bc of this surgery? Mainly I have posted this bc I like to talk to other people who have been in my situation before, its help me feel a little stronger about this. I am trying so hard to be strong and not to break in front of my husband and kids but I feel like everyday is getting harder. Thank you to anyone who posts back.

Elizabeth

[nancyann]

Elizabeth:  I am so glad you found us !  Take a deep breath in & out,  you're going to be okay.   Blindness isn't a worry with this surgery.
You're going to need 24/7 help with the kids for at least 2 weeks though (those with children help me out with this !).
It's great to hear your surgeon did a fellowship at House.
Keep a peaceful heart during this journey.
Please ask whatever questions you have.

Always good thoughts,  Nancy

[Sue]

Hello Elizabeth,

Wow, so sorry you have to join our little support group.  It seems like the younger you are, the bigger the AN.  I don't know why that is, but that sure seems to be the case on here.  There have been several people your age or younger who have had to go through surgery. it is a very scary proposition and they were all pretty terrified too.   Let me assure you that you will live to tell the tale of your surgery, just like all of them did.  It is vitally important however, that  your surgical team be very experienced, military doctor or no military doctor.  He needs to have a lot of experience under his belt.  Being that he trained at House is a good thing!  

Lots of info on here about surgeries, what to expect, what to take, how to cope, recovery expectations and after surgery care.  You will need somebody to help you with the kids afterward, that's just a given.  Your husband, we hope, is also reading  up on all of this and will be there to comfort and support you.  Yes, it will get harder for you, and it's okay to cry, vent, throw a hissy, pout, and just plain be angry.  We've all been there, done that, that is for darn sure.  But, it will get better but it does take time.  And somebody on here will be with you every step of the way, if that is what you want.  And please, even if you don't show signs of vertigo/dizziness, please read this article anyway, because a damaged balance system causes lots of symptoms that you might not even be aware of.  This doesn't really give you much in the way of what to do about it, but it certainly explains how our balance system works and what happens when something is out of whack.  I had some of these symptoms long before anything else showed up.

http://www.hearinglosshelp.com/articles/balancesystem.htm

Best wishes to you in your treatment and eventual recovery,

Sue in Vancouver, USA

[TP]

Being scared is perfectly normal. However, my suggestion is to make sure you have all your "ducks in a row" before you go into surgery that way you won't worry. Make sure you have someone lined up to take care of your kids on the day of your surgery and at least several days after surgery since they are young and you more than likely will be in critical care for several days. My brother and his wife were there at the hospital so when they rolled me into pre-op (my husband was able to go in with me) my daughter (who was in high school at the time) was not alone, my brother and his family were with her. In addition, the week before my surgery I had my will completed and other papers updated. I did have double vision when I woke up from surgery but I was able to have surgery to correct that and now everything is fine.

I believe in the power of prayer and I had a lot of people praying for me. If it was not for prayer I don't think I would have recovered as quickly as I did even though I did have some complications. You are a young strong women and we will keep you in our thoughts and prayers. My suggestion is you rest as much as you can in the next few weeks. It is very important you go into surgery feeling rested and having a positive state of mind. You will be fine! Stay STRONG!

[Kaybo]

Hi Elizabeth and WELCOME from Texas!  I think that we have another new poster and she is a military chic too.  I may be wrong but I think she was or is in your area - wouldn't that be weird if y'all were at the same place??  I was 25 when they found my tumor and mine was also very large - I'll be 39 (gasp!) Wednesday and couldn't have a better life with a wonderful hubby and 3 beautiful daughters that I had AFTER my surgery.  I would be more than happy to call you if you want to PM me your number.  Also you can check out my blog by clicking on the little world icon on the left and see what my life is like now, 13 years after surgery!

K

[lori67]

Hi Elizabeth and welcome from one Military wife to another! 

You've gotten some good advice and hopefully some reassurance that everything will be ok.

 I have 4 kids, and my youngest were 4 years old and 9 months old when I had my surgery.  Of course I was more worried about them than about myself.  You'll definitely want help for at least 2 weeks after surgery, especially with the little one.  My husband took 2 weeks off and then once he went back to work, I just made some adjustments to the way I normally did things.  I made sure all the baby supplies were downstairs so I wouldn't have to go up the stairs to change a diaper or clothes, and I kept a pack and play downstairs for naptime.  I made meals ahead of time and froze them so I didn't have to worry about it.

My 4 year old was in preschool 2 days a week, so I arranged for one of the other moms to do the transportation for a few weeks.  There are lots of things you can do to make your life easier for a little while.  The hardest part for most of us is asking for help, but ask for it and accept it when it's offered.   I'm assuming you have Tricare - if so, look into getting them to pay for things like a housekeeper once a week or so.  My sister in law, an Air Force wife, helped out her neighbor on base during treatment for cancer, and Tricare paid for a lot of services for her.

Where are you stationed?  I have a good friend at Fort Lewis, and I think Moe, another newcomer to the forum lives near there.  This whole geography thing throws me!

I think you'll find after this is behind you, that you are a lot stronger than you've ever thought you could be.  Take a deep breath, don't worry too much.  You'll get through this.

Lori

[sgerrard]

Hi Elizabeth,

Welcome to the forum. Please see all the previous posts for good advice on having surgery. 

All I will add is don't be scared, you are going to be back with your family and seeing your kids a few weeks after surgery. Everything else is just bumps in the road, even if some of them are kind of big bumps.

Steve

[anissa]

Hi Elizabeth.  Will you be my surgery buddy?     I also found out 3 weeks ago about my 2.1 AN, I'm 39 and have 4 kids, ages 5,5,3,1.  I'm having translab on April 1st.  You are SO not alone with all the questions and worries.  The people here are so great and have so much knowledge and experience, I hope you can get all your questions answered.  We are going to be fine and home to our families in no time.  ((hugs))

[leapyrtwins]

Hi, Elizabeth -

as others have said, blindness is not a side-effect you normally encounter from AN surgery.

I'd like to suggest that you contact the ANA and get their informational brochures.  They explain a lot about ANs, and the possible side-effects of surgery; which is something the docs can tell you, but they usually use medical-speak.  I found the brochures very helpful and very easy to understand. 

Good luck on your AN journey,

Jan

[Syl]

Elizabeth:

Welcome to our club! What are your symptoms? Hearing loss, facial paralysis, dizziness? Don't worry about losing your sight. That is not an issue with ANs or AN surgery.

The more common concerns with having surgery are additional damage to the facial and hearing nerves. Stroke is also a concern, but more so with retrosig and middle fossa than with translab.

In my case, I ended up with headaches after surgery--hardly ever got headaches before surgery. Your balance will certainly be really off after surgery, but a walker or cane will be very helpful at first.

It's very important to keep a positive attitude. It helps the recovery process. Ask lots of questions and you will find that you will feel more at ease the more you learn about ANs and life after surgery. Having an AN is a big deal and very frightening, but you will be ok. So be sure and assemble your caretakers.

Just remember we're here for you.

Syl

[Pooter]

Elizabeth,

Welcome to our little place in the world!  It's an exclusive club you're joined!  I'm sorry that you've had to join us, but we're glad you're here!  As others have said, blindness is not a complication after surgery that you'll likely to have.  I wouldn't worry about that at all. 

I just had surgery in May and have 2 small children (3 and 9).  You'll definitely need help for a few weeks with the kids while you get your bearings back.  You will likely have lifting restrictions, so picking up the kids will be a no-no (but you can have them put on your lap for you sooner).

I would talk to your surgeon about how he feels about "debulking" the tumor (basically, hollowing it out and taking away most of it's blood supply) and then follow up with targeted radiation.  Jim, a member here, had a pretty large tumor also and his doctor did that exact thing and aside from being SSD (single-sided deafness) he has no on-going complications.  Talk to your surgeon and express to him that you'd rather follow up with radiation in lieu of them causing major trauma to the facial nerve.  Jim was back to a fairly normal routine in a few weeks so I can only surmise that the method of debulking and radiating after factored into that for him.

Being scared is normal.  As someone very wise told me once, it's okay to have butterflies just make sure they fly in formation.

Welcome to the forum!

Regards,
Brian

[Jim Scott]

Hello - and welcome, Elizabeth ~

I'm so glad you've discovered this website and the message boards.  Previous posters have offered all the really good advice but I'll try to reassure you that AN surgery will not cause blindness.

I'm the 'Jim' Brian ('Pooter') referred to in his post.  Like you, I was diagnosed with a 4.5 cm AN.  Just as Brian related, I underwent 'de-bulking' surgery ('retrosigmoid approach') that hollowed out the tumor and cut off it's blood supply.  I did not suffer any real post-op complications other than a very tiny 'numb' spot on one side of my tongue and a few days of double vision when I tried to read.  The 'numb' spot remains but the double vision cleared up in about 3 days.  Some 3 months following my surgery, I underwent a series of 26 FSR (Fractionated Stereotactic Radiotherapy) 'treatments' over 5 weeks (25 minutes per day on an outpatient basis) and suffered no ill effects.  My last MRI (8/08) showed tumor necrosis (cell death) and some shrinkage. With my doctors permission, I resumed driving within two weeks.  I regained most of my balance within four weeks.  I resumed my normal activities by six weeks and steadily improved.  Unfortunately, my hearing in the affected ear was permanently lost prior to my diagnosis, but I've fully adjusted to that deficit.  However, specialized, 'bone-anchored' hearing aids (BAHA) are available and effective for those who desire them.  Those who use a BAHA rave about them, so I can recommend them.  I'm retired and don't have to deal with work stresses or young children (my only son is almost 30) but I believe I came through the AN experience quite well and want to encourage you in that regard.  I was almost 40 years older than you are and did fine.  You have youth on your side! 

Please don't allow your fears and misconceptions to paralyze you.  This is a serious but eminently surmountable situation.  Many others have dealt with it quite successfully, as I'm sure you will, too.  Please continue to visit this website and these forums to research and learn more about acoustic neuromas, their treatment and what to expect.  It isn't all doom and gloom, Elizabeth.  Honest.  I'm proof of that, and I'm not a rare exception.     

Jim

[EStacy07]

Thanks Jim for telling me about your surgery! I'll send an Email to my doc and see what his thoughts are. That would be great if he could save my facial nerve. Thanks to everyone else who has posted, everything everyone has said is very helpful. But I do wonder, was it easy to go out for the first time after surgery? I feel like everyone is going to be staring at me, if I have facial paralyis. And if ya'll were nervous how did you get over it. So far I am only experiencing hearing loss on the AN side and I suffer from vertigo occasionaly and if I tap the AN side of my face it tingles.

Thanks

Elizabeth

[lori67]

Elizabeth,

As one who has been dealing with facial paralysis for just over 2 years now, I have to tell you, most days it's not as big a deal as you'd think.

In the beginning I was just thankful to be out and around people after what felt like an eternity (ok, it was only a few weeks) that I didn't really think about what my face looked like.  And thinking back now, it really looked pretty bad.  It wasn't until after that initial getting out of the house phase that I started to feel a little self conscious about how I looked - and yes, people will stare, but I learned that the people I care about - my friends and family -never made me feel any different and that's what was most important. Why should I care what a bunch of strangers in Walmart think anyway?  There have been a few people that I've interacted with that have actually asked me what happened - one was a young girl at the supermarket who asked because her mom had recently had a stroke and she thought I might have too - her mom has weakness on one side.  I explained to her that no, I had a brain tumor.  She told me that she felt so much better about her mom's situation now that she saw I had something major and was out grocery shopping with my kids like nothing was wrong - made her hopeful that her mom would get back to her old self again.  You would think that I'd be more offended by someone asking me what happened, but I actually thanked that girl for having the courage to ask and to not just stare.  It was a learning experience for both of us.

I guess the best way I can sum it up is that, yes, some people will stare, and yes, some days it will seem to bother you more than others.  But just think - you survived brain surgery!  You ae so much stronger than those people!

There is a girl who works as a cashier in a store near me - beautiful girl, probably in her 20's.  To look at her she looks like any other girl, but when it's your turn to pay, you notice she has bad scars on her arms and neck, a fairly new trach scar (the breathing tube that goes into your neck) and from my experience working in neuro as a PT, I'd say she has suffered a traumatic brain injury at some point.  Intellectually, she's fine - she runs the register, handles the money, everything - but her speech is very slow and labored and not terribly clear.  I see customers treat her as though she's truly stupid and they talk to her really slowly and just talk down to her.  It makes me CRAZY!  She's obviously not stupid or she wouldn't be working there handling your money!  So, my point of this story is that I'm sure that girl gets all kinds of stares and comments every single day, but she has been working there for at least a year that I know of, so somehow she is able to overlook all that and go about her life.  So whenever I feel self-conscious about how I look, I think of that girl and how much inner strength she must have, and probably family and friends who don't see anything different when they look at her now.  Sometimes I find I need something to put things back into perspective for me.

After all that, I will say that you may not even have facial nerve issues, or they may be temporary.  The important thing is that you will be there for your kids - and I guarantee they will not see anything wrong with you at all.

Lori
p.s  Sorry about any typos -  I had an unfortunate kitchen incident yesterday and it's hard to type with a giant band aid on your finger!   

[Cheryl R]

Elizabeth.   Lori has described having facial paralysis very well.            I think people look at one who has it and their thoughts are more just glad this isn't me than  really thinking about the one who does.
I have NF2 and more than one surgery.       I had facial paralysis for 3 1/2 mos after the first.   I was back to work as a nurse in 2 mos.     No on ever commented on it.      My did co workers were good to tell me when it was improving.          The next time I had a facial neuroma with a nerve graft and back to work in 2 mos.    Was almost a year till good improvement and am not perfect and never will be as poor smile.   You perfect a good closed mouth one.           I had one old guy ask how long I had had problems as his way of wondering.           More older people were excited over that I couldn't hear in one ear since so many of them had hearing difficulties and they were glad someone understood.
I had surgery almost a year ago on the other side and this time no facial paralysis.  I was so surprised as was just expecting it.        I am now retired.                      The paralysis isn't fun but is livable with.                                 Cheryl R