I am home!!!!

[m4guzman]

Hey Everyone.  I am home.  I went in on Monday6:00 and came home on Thursday.  I can't really see so good so please don't mind my spelling.  First of all THANK YOU THANK YOU THANK you  for warning me that the first 3 days do not count.  Talk about HELL.  I was regretting every decision I ever made.  I I was in NYU for a middle fossa.  I don't thhink that they saved my hearing because I had hearing when I went in and now I do not.  The tumor was stuck on my hearing nerve.  He said that my facial nerve was fine and I think they cut my balance nerve.  My question that I have today is if they did not touch my facial nerve, then why is the left side of my face not moving?  They say it is temperary.  WHY?  My eye does not shut and I can not see because there is so much junk in it.   

I tried walking around a 1/2 mile today and did well.  Not balance I had to hang on to my husband.  Please someone tell me when I will begin to feel at least 50%.

Sorry if I sound so down, but I did really good up until the surgery.  I guess I nver thought I would have problems with my eye and face. Please tell my that it is just temperary.  Is there a chance that my hearing will come back?  How much should I be walking.  I will do what every it takes.

sorry
Marybeth

[Kaybo]

Hi Mary Beth~
Good to hear from you!  Sounds like you are doing GREAT for just having BRAIN SURGERY!!  I can't exactly tell you what you want to hear but I bet if you give everything a little time, things will start to fall back into place!  Did your face work immediately after your surgery or did you wake up to it not working right?  I ask that but then i don't think that really matters - "debbi" (who had surgery 1 yr. ago) woke up with the temporary paralysis and she has made incredible improvements over the last year.  I would love to be able to tell you that it will all go away in a couple of days, but to be realistic, it may take a while.  Again, please try to keep in mind that you just had MAJOR surgery and your WHOLE body needs time to heal!!  Listen to your body and rest when you need to!  We are all here for you!

K

[sgerrard]

Hi Marybeth,

Nice to see you posting again - typos are not a problem.

Temporary facial nerve effects are quite common after surgery; basically the shock to the system of having someone poking around in there. If the nerve is intact and they said it was temporary, it should recover in time. Meanwhile you will get to play with eye drops and gels.

The hearing nerve tends to be much more sensitive, and can't always be saved, whether you do surgery or radiation. If you have lost hearing on that side, chances are it is not coming back, though it occasionally happens.

Having just lost a balance nerve on one side, it will take a little time for your brain to adjust. A little walking every day will help. In most cases you get back to fully functional balance, and can go ride a bike or run a marathon if you are so inclined.

I think you will find you feel a lot better a week from now, and better still in two weeks. Just sleep a lot and relax, you will heal up.

Steve

[leapyrtwins]

Welcome back, Marybeth.

As Steve and Kay said, things will get better in time.

Usually with Mid Fossa the docs are able to save the hearing, but I'm not sure if hearing is evident immediately post op or if it takes a little time for the swelling go to down, etc.

Since your AN was stuck to the hearing nerve, your docs might not have been able to save your hearing even though that was their original plan.  I had the same situation, but I had the retrosigmoid approach.

Get lots of rest and please keep us updated on your recovery.

Jan

[Cheryl R]

Hi Mary Beth,      You'll know when you feel up to walking.              The first couple weeks ,not much.      That is the time with lots of naps.       You do more as you feel like  it.           
I can't say about the hearing at first as there is lots of weird noises and the swelling does disturb the feel.      They will keep watch on it with audiograms.                                    The face can take quite a while to improve.        The nerve has to heal on its own before the muscles can work.   Facial muscles are not like regular muscles  so do not atrophy soon.                 Some facial therapists do not see a patient until a year is past as want to see how the nerve has done.                  The wanting it to get better is hard and frustrating.           The eye issue is annoying and not fun to keep in good shape and prevent any problems.     
Hang in there,       You are very soon post op and it takes time to get better,                                  Cheryl R

[Jim Scott]

Welcome back, Mary Beth ~

I'm pleased to learn you're home from the hospital in just a few days but sorry you're feeling a bit down due to your facial immobility and other issues.  Steve and Kay answered your questions as adequately as possible, considering that the timeframe for regaining facial mobility, balance and even hearing is simply unknown, even for a doctor.  We can speculate all day long but that won't do you much good and could possibly raise false expectations.  Rest assured that you will improve.  Maybe not in every area as quickly as you would prefer, but things inevitably get better over time.  I say that as one who had no real post-op complications but now, almost 3 years post-op, I'm even better than I was a year or even two years ago.  You'll get there, especially if you're willing to do 'whatever it takes' - which may just be to have patience.   Please know that we're rooting for you!   

Jim

[suboo73]

Hi MaryBeth!

You are a postie, now, congratulations!
Since i am in W & W, i can't answer your questions about surgery...

But i will send my thoughts and prayers for a speedy recovery.
Sincerely,
Sue

[wendysig]

Marybeth,

Everyone recovers in their own time, so unfortunately I don't think anyone can answer  your question about that.  It's one of the things that make the AN experience frustrating for many of us and probably our docs as well.  The AN experience is a lesson in patience -- if you don't learn it now, you never will.  Be patient with yourself during your recovery -  time really does heal most if not all wounds.

Wendy

[Migoi]

Congratulations on getting to the next phase of the journey.

It's impossible to tell if it will apply to your case...but there can be temporary loss of facial function. When they finished my middle fossa surgery my facial nerve was functioning fully. At the end of the first 24 hour period post surgery I had zero movement on that side of my face. Eye wouldn't close, no ability to move. I was told that it was due to minor internal swelling and was temporary.

It did turn out to be temporary, not quite as temporary as I wanted..about 2 months total. It took a good month before I started to have any movement then over the month after that, I slowly regained pretty much all the function. I still have a bit of bugginess... a random twitch, eye closing when I chew..but no real difficulties.

Again, this may or may not pertain to your situation, just to let you know that there can be temporary post surgical loss of function. If your surgeon is confident that your facial nerve wasn't damaged during the AN removal then he is probably confident that it is temporary.

The other side is that I didn't really believe them when they told me it should be temporary. I undertook to get myself to the point of being able to accept it as one of the challenges of being 1 in 100,000. By the time I started to get function back I was to the point of being able to truthfully tell myself that if this is the worst that comes out of this...then move on and enjoy life. It seemed a much better outcome than the whole "continues to grow until it pushes against your brain stem and you die" possiblity. I had already started informal email conversations with speech thearapists that I knew through my job (I'm a special education teacher).

Here's to 100% positive outcomes.

..take care.. tim b

[m4guzman]

You are all the Best!  I will be patient.  I know things could have been a lot worse.  I was just trying to stay so positive.
Thank you all for you advise.  This forum has helped me so much.  I hope I can help others when I feel better like you all
have helped me.  Thanks

marybeth

[msmaggie]

Marybeth is a postie!  Congratulations on making it through to the other side.  It does take a little while....or maybe a long while for things to heal.   My healing process did not fit a the norm, but I still made it through.  Be patient and let your body decide its own timetable.  You will be able to celebrate small victories as the days unfold, and they will be sweet indeed.

Priscilla

[tenai98]

Congrats on becoming a Postie...Time and patience are now your two best friends. I'm 4 weeks post op and time and patience are now my two best friends along with rest. 
JO

[mimoore]

Hi MaryBeth,
I cannot believe you are posting already. Don't be hard on yourself... be kind to yourself. Let others care for you, don't push yourself... you will get better in time. Eat well, rest and you will slowly start to feel better. Remember you did just have brain surgery honey.
We are all here for you, please lean on us we do understand. I have learned a few good tricks to deal with the eye and face if you need anything please do not hesitate to PM me.
Hugs Michelle 

[Keri]

Hi Marybeth,
My quick progress of what it was like for me -
Week one - an out of it blur. was very surprised that i had facial paralysis since it came off my facial nerve cleanly and the nerve responded well at the end of surgery
Week two - getting better; walking some; headaches; tired tired tired; facial paralysis still a big issue - difficult to eat, drink, eye not shutting  - got advice from the "eye issues" part of forum and got some good goop and drops and that made a huge difference with my eye
Week 3 - more like normal but still tired; started running slowly again
Since then - good days and bad. now i'm at three months post op. people are telling me now that my facial movement has improved a lot and sometimes they can't tell (more related to my mouth - eye still not closing too well). headaches are pretty much gone. fatigue is still there at times but better.
You'll hear a million times the facial nerve takes time - it does, but it does improve.
Please take care of your eye and make sure it is moisturized with the gel or drops.
Take care, and it's been good to hear of your progress walking, etc.
Keri

[EJTampa]

Hello Marybeth!
 
So glad to see you back at home and recovering!  I'm sorry about the "extra" issues you are having to deal with, but I would trust your doctors when they tell you it will be temporary.  They know whether or not they did direct damage to the facial nerve, and it sounds like they are quite sure they did not.
 
I will pray for a full and QUICK recovery for you, since waiting is no fun .
 
Ernie