Surgery Scheduled for 11 Nov 2010

[kaitysmom]

My AN surgery is scheduled for the 11th of November. This is my first time on this site. I was hoping to find some helpful guidance as what to expect, etc.  I've found a couple of folks who've had theirs removed and everyone is different. I just don't know what to expect.  My tumor was about 20 mm in May.  I haven't had an MRI since then.  Any information is greatly appreciated. 

[CHD63]

A big welcome to you, kaitysmom .....

Glad you found us.  Tell us a little bit more about your situation.  What symptoms sent you to the doctor?  What type of surgery will you be having?  Translab, Middle Fossa, Retrosigmoid?

If you have not already done so, send for the ANA free materials.  They will answer many questions and the answers are very reassuring.

Best thoughts.  Clarice

[Lizard]

Welcome to the forum, I'm so happy you have joined us, as this family has really helped me through the tough patches with my recovery.  I'm wishing you a "bump" free surgery and recovery and yes everyone is different.  Its hard to generalize, but we do like to say that the first 3 days after surgery don't count, they can be a little tough but hopefully you are in ICU with a dedicated nurse as I was.  They were so caring and were really on top of how I was doing.  The worst part of my hospital stay was the lights, I was extremely sensitive to light due to nystagmus and headaches so I had a rolled up pillowcase over my eyes for the better part of my stay.  Looking back sunglasses with one of the arms broken off would probably have worked better  
Oh and your date is my 2 year anniversary of my AN removal!  So I'll be thinking of you...

Good luck to you and please feel free to ask any questions or express anything you may be feeling, chances are someone else has gone through the same or similar experience.  I'm sure others will be along shortly to share as well.  

Take care,
Liz

[kaitysmom]

Hi there...

Thank you for the warm welcome.  I actually am asymptomatic.  I hit my head at my daughter's horse show in March.  A week later I started having visual distortions and I thought I had torn my retina.  After a month of doctors I was sent to a neuro opthamologist who did a MRI.  She found the tumor totally by accident.  I've not had any problems to date other than I find myself incredibly tired as the time has progressed.  The doctors say my tumor was 20 mm  back in May when the MRI was done but I've not had one since then.  Given the tumor is so close to the brain stem I've elected to go in and get this taken out now rather than wait.  I believe the type of surgery they said was retrosignmoid but I'll have to double check. I'm going into Johns Hopkins.

It hasn't been a "real" thing to me until I went into my preop appointment.  Now, it's all too real and I'm playing catch up with all I need to do. 

I don't even know what I need to take with me to the hospital. YIKES!!

[CHD63]

Thanks for the additional information.

If you do a search on Chapstick, it will pull up all kinds of good info on what and what not to take to the hospital.  It's kind of a joke on this forum, but Chapstick seems to be the universal common thing everyone said to be sure to pack.  The first three days after surgery (F3D) you will not care what you have with you, nor probably remember much of later.  Because of IVs, you will not be able to wear your own night clothes.  You might be able to use your own robe (I did because I had a central line in my neck).  You may want to take your own slippers (step-in kind as you will not feel like (nor will they let you) bending over).  If you have someone with you for its security, you may want to take your own IPod (using only one bud ..... that's another story for later).  Many of us had double vision for awhile afterwards so reading was not an option.  You may not have that so you could pack some light reading material (magazine with lots of pictures, etc.)  I took my own toothbrush and favorite toothpaste, as well.  Pictures of family are always good, or anything that makes you feel relaxed.

Best wishes.  Clarice

[Jim Scott]

Kaitysmom ~

I want to add my welcome and mention that 'retrosigmoid approach' AN surgery is quite common.  I underwent this as a 'de-bulking' surgery on a large (4.5 cm) AN with great success.  The surgery was followed (3 months later, as a plan) with FSR to kill the remaining tumor's DNA.  It appears to have worked.  My hospitalization was barely 5 days and as Liz noted, the first few days were mostly spent sleeping and being awakened (in ICU) for needles and neurological tests ("follow my finger").  By Day 3 I was sitting up in a chair and walking to the nearby visitor lounge, by Day 4 I was walking around the halls (accompanied by my wife) and by Day 5, I was eager to go home because I felt fine (I had no post-op complications) and I wanted some real food.

I have to add the usual caveat that we are unique individuals and that one AN surgical patient's experience, good, bad or somewhere in-between, is not a guarantee that another AN surgical patient will have a very similar experience, but of course I wish you a successful, uncomplicated surgery.

As for what to bring to the hospital - not much.  There have been numerous threads/posts on that subject on these forums.  Just type 'what to bring to hospital' in the 'search' box to retrieve them.

Jim

[Cheryl R]

You won't need a lot at the hospital.     Lip balm and if wear glasses then an old pair with the bow off the side of the surgery.    Some of us wear pjs later and some don't.     If so then need ones with large neck or button front as the head bandage is large.    Most hospitals give you slipper socks and the necessary tooth brush and paste.     You probably won't feel like reading as you may have some issues with the eyes or you may not.    Clothes to wear home need to be loose if have a inciision in the abdomen for fat to be taken out of and used as packing.                Your balance is likely to off post op and it varies how soon one gets up and walks with ease.         You may have an off taste for food after and bad taste in mouth for awhile or you may not.      You will be tired easy and the first couple weeks very tired but it all does get better in time!      You have to be somewhat active as can tolerate but not over do.    No bending or straining so no house work for a time when get home.            You can't overdo to prove to yourself that you will have a normal life again as you will get better in time.                   Some have headaches post op some don't.     I never did or have alot of pain but that does vary.        Some drs send you home on oral steroids and some don't.   If you are on them then you may have trouble sleeping or be very hungry.      You will have IV steroids while in the hospital.    You may have some nausea immed post op and if so then make sure to tell the nurses so can get meds for it.  
    Keep asking questions here and we can be of help.            Good luck to you!                     Cheryl R

[kaitysmom]

Thank you so much for the info.  I have a feeling that less is more when it comes to taking stuff to the hospital.  I will carry my iPad for reading/surfing/music.  I am encouraged by all the success stories. I have to keep in mind that time does heal and as bad as it seems the first few days, it won't be like that forever.

[Shan1014]

Hi,

Sorry you are having to go through all this but I am glad you have  a date set.  That's the first step!   You are so right about everyone's experience being unique.  I had surgery in March and then it showed significant regrowth and I finished radiation 3 weeks ago.  I am hoping that did the trick for me... I will find out after the post-Radiation MRI's.

I have a website where I am sharing my experience for others.  I broke it up into 4 pages. There are no catches to the site or advertisements... I just wanted some freedom in adding pictures and such.  Please take a look when you get a chance, it may answer some of your questions.  mymediabandit.com/

Best wishes,
Shannon

[Funnydream]

I know how stressed your feeling right now. I'm less than 1 month post-op retrosignmoid for a 28mm AN left side.

1. Chapstick for sure. I forgot this and made family go get me some.
2. Wright down a list of all your concerns. You WILL see your surgeon before they put you to sleep.
3. The Anastasia is not like you think. I was under for 16 hours and I threw up for a whole day afterwards. If your under for like 3 hours. You won't even notice the after effect.
4. I took tons of stuff with me. Like DVD player with movies. MP3 player. etc. Wasted effort. Was in no mood for any of that. I did use my cell phone allot.
5. I did have double vision. Has already cleared up. My balance is getting better too.
6. I took my best pillow and forgot it when I left because I was so happy to get out of there. But it sure was nice to have my best pillow when I was there.
7. I would say try and take at least 6 weeks off for recovery.
8. The steroids did make me delusional to the point I was talking to nurses I thought were in the room. But no one was there when I really focused. I was warned beforehand about that. I also had hiccups that I was warned about. But know how to hold me breath to control them.
9. I asked when rolled into the surgery room. What is 21st century about this room now. They all looked up at 2 big flat screen monitors that was hanging over head. I didn't know what to think of that. My surgeon notice I was stressed a bit by that and said the removal tool was ultra sonic. Made me feel better the way he said it.
10. I would say I felt NO pain at all after a 16 hour surgery and was very sore on the side I was layed on. I called for morphine very small dose 2 ICU I used to get sleep with. Was told the Steroids keep people awake for days. I did notice this. But the nurses never asked if I was in pain when I asked for morphine. I just got a direct injection into a catheter that ran to my heart. And went to sleep very shortly after.

I hope this helps. Remember I'm just guy behind a 'puter. So please take what I wrote as just that.

OH P.S. My step mother which I love tons was there when I woke up. And her perfume made me sick. I would ask family to avoid any thing that give off a sent. Even my dads after shave made me sick.

[Lizard]

Shannon, loved your blog.  Thanks for sharing your journey.
Liz

[nanlt124]

hi and welcome   i am fairly new myself but, have found everyone very helpful     just a word of encouragement from me     i had my surgery (r side 1.9cm x1.6cm) on 09/30/2010   so i am now 4.5wks post op and doing great    as stated by most people - i do not remember anything from the writing on my ear by my doctor thursday at 630am until sometime late friday night in neuro icu.   i was kept in icu, due to bp issues, until monday and then i was sent home   they tell me that on friday i actually walked (with a walker that came home with me) out of my room and into the hallway   i do not remember that walk but, as of saturday, i took a couple of walks a day   i had no bandage at all    i had double vision (and still have some problems with seeing clearly - using gel and drops daily) and was kind of out of it for a few days   i really took it easy the first 2-3 wks at home    my son is here and he did everything for me  (i was and still am exhausted - you will need some help)   now, i have started some basic chores and have not needed the walker for at least a week (my balance is not perfect but, has been off for some time and my r side hearing is gone but, i had lost that in august - when we discovered this thing)  i have had no migraines and very little pain since i got home   i think i took 3 pain pills and now take aleve for minor headaches/body aches   my biggest complaint is that my taste is really off and i do not enjoy anything i eat or drink - hopefully temporary     i also feel something in the back of my throat that is annoying   i will ask the dr friday when i go for my 5wk f/u     i understand that i will feel fatigue for quite awhile so, guess i will adapt   this week, i am going to start driving and getting back to normal (except for the naps)      so anyway, go into your surgery feeling positive that you are getting that thing out of your head      when done, walk and focus on getting well     thinking of you                                       
  nancy from clearwater