Thinking a lot about surgery and the facial nerve

[catlover]

Hi everyone,
I am still waiting for a date of surgery and my thoughts go round and round in my head. I'm thinking a lot about how it will be to wake up after surgery and unfortunately, I am also thinking about what happens if I don't wake up!!! Right now I'm wondering about facial paralysis. How big are the risks that I'll get facial paralysis with the sigmoid approach? My AN was 1,6 cm in September 2008 so it's almost 6 months since I had my latest MRI. I know that not anyone can say for sure that I'll get facial paralysis or not but I'm feeling great - I have just a little tinnius, no vertigo and no other issues at all.

All the best to all of you 

Helene in Sweden

[alicia]

I am right there with you!  Completely understand the feelings you share.  Every few days my concerns and thoughts change.  I take a lot of deep breaths and have realized the negative "what ifs" are not going to help.  I am going to try to believe in my doctors and hope they make the right choices in surgery.  I think I am feeling ok that they can save my face, but possibly at the risk of leaving some tumor.  Then I jump to regrowth...radiation...and then...deep breath!  Then I play with my dog and relax! 

I am very grateful for everyone sharing experiences here.  I am glad I have the chance to be prepared. 

How were you diagnosed?

[Kathy M]

Hi Helene,

I was so scared about the possibility of facial paralysis before my surgery - I think that was one of my biggest fears.  I felt pretty darn good before surgery too - a few balance issues, slight hearing loss, some tingling - my tumor was much bigger than yours (so more symptoms), but all in all, I was very healthy.  You're right, there are no guarantees - but I'll bet your surgeons are going to do the very best they can to give you the best possible outcomes.  Even with a really big AN (3+ CM), I had no facial weakness at all - not even immediately following surgery - but they did leave a bit behind.

So now it's a different worry - regrowth....but if it wasn't that worry, there would be something else to catch my attention.  I am a worrier by nature!  Stay armed with good information, stay surrounded by positive people, and do what is the very best for yourself always...things will fall into place after that.  By the looks of things, there have been many surgeries around here lately, with terrific outcomes and I'll bet you'll do great, too! 

I hope you get your date soon - that waiting game is awful!  Good luck to you!!!

Kathy

[leapyrtwins]

Helene -

docs can quote you all the statistics in the world but unless you become one of them, it doesn't really matter.  There are no guarantees with anything in life, you basically take gambles every day and unfortunately AN surgery - or radiation for that matter - is just another gamble.

Although I've heard lots of statistics that facial paralysis is very common with retrosigmoid - and less so with translab - that doesn't always hold true.  I had retrosigmoid and had very slight facial nerve damage post op.  It was cleared up with one dose of steroids.  Others on the forum have had translab and they have facial nerve damage. 

I guess my point here is no one can tell you exactly what will happen.  They - and you - can speculate all they want, but speculation is not reality.  The best way to cope is to hope for the best but be prepared for the worst.  Don't stress about things that may never happen - it's counter productive and quite frankly just a waste of your time.

As for not waking up post op, it is a possibility - but definitely not a probability.  You have a larger chance of getting hit by a car as you walk across the street than you do of dying from AN surgery.  You also have a bigger chance - in the long run - of dying from an untreated AN than you do from AN surgery.

I not trying to say you're foolish to have thoughts like this - we all have or had them - but you need to put things into perspective.  Don't let your fear get the best of you.

You can get through this.  And you will.

Jan

[EJTampa]

unfortunately, I am also thinking about what happens if I don't wake up!!!

Well, I mentioned the same thing to my wife, about not waking up.  We pretty much came to the conclusion that it wasn't me that was going to have to worry about it if I didn't .
 
I had restrosigmoid and no immediate weakness, then one night I had it, but it was gone by the end of the next day, never to return.
 
I've always been of the philosophy that a stitch in time saves nine.  I wanted my small tumor out before it had a chance to become something harder to remove.  My tumor was partially sticky, so letting it get bigger would have caused more problems.  I think you are doing the right thing by getting it taken care of now.  Of course, others here may have different opinions, and the option you chose will be the right one for you.
 
Ernie

[anissa]

The waiting part between diagnosis and surgery is the worst, my mind went crazy with possibilities and what-ifs.  I can't say "don't do that" because I know how hard it is.  I have a post floating around here with this same topic, my "obsession of the week" and the conclusion just came down to - what will be, will be.  There are no guarantees, not even any good probabilities.  I just had to dig down and say that this is my life, I have a brain tumor, I'm going to do my treatment of choice, and whatever happens, well, I'm still gonna be me, and sometimes life is hard.  Once I came to grips with that I felt peace.  I guess easy to say that now, I didn't have any paralysis/weakness but immediately out of surgery my Dr. told me basically to expect it and that he would be very surprised if I didn't have some sort of facial paralysis.  The Drs. did leave a smidge of tumor behind because they couldn't get it off the facial nerve and again, what will be, will be.  Its the only mindset I can have without driving myself completely mad.  Best wishes with your treatment and recovery and peace be with you, too.

[Jim Scott]

Hi, Helene in Sweden ~

As others have written, your fears are normal but ultimately, unproductive.  The eminently practical Jan (leapyrtwins) offered some very cogent advice concerning the element of risk in everything, including AN surgery, of course.  As you must realize, the mortality rate for AN surgical patients is about the same as my chances of being crowned King of Sweden.  Well, close, anyway. 

For whatever it may be worth to you Helene - Ernie, Jan, Marci, myself and others - some of us with large ANs - had the retrosigmoid approach AN surgery and didn't suffer any noticeable facial paralysis or weakness.  I trust this will be your experience, too.  Please try not to allow fear of the unknown to control you.  Many prayers will be offered for you and many folks will be rooting for you on your surgery day. 

Jim

[JohnnyDiaz]

I just went in for my 6 month check up and everything looked fine. I feel great and just want to encourage you that being fearful is normal. I set goals for myself and thought about what if I dont do anything about it.... That kept me going. Try not to focus on fear and remember alot of us have gone through this type of surgery and hey we are here to encourage you and pray for a great outcome. Let us know as you get closer... we will be thinking about ya!

[sgerrard]

I am also thinking about what happens if I don't wake up!!!

You wouldn't get a knit hat, for one thing. 

There is a chance of facial paralysis. Yup. But we take chances all the time; just driving on the freeway has a certain risk. Your chances are better with a smaller tumor, so if you are going to get surgery eventually, the sooner the better. Think about how good you will feel if you wake up and don't have facial paralysis, and focus on that. And if it does happen, well at least you'll be in good company.

I'm not sure I have said Hi to Alicia yet, so I will also say welcome to the forum, Alicia.

Steve

[tenai98]

I just had my surgery and went thru the same motions...its not fun...I woke up to no pain, no paralysis, no taste issues, no nothing...I feel very lucky...I AM lucky... I did wonder day after if I would do it all over again..yes...
JO

[catlover]

Hi,
Thanks for all support! I haven't been thinking so much about the surgery today, thanks to all of you wonderful people!  It's amazing how much support you always get on this forum when you have wonders, questions and feel pure fear. Thanks! It really helps me and I always feel better and handle my feelings in a different and more positive way afterwards. You are such great folks all of you! 

To Alicia I would like to say welcome and it seems like we are in the same situation - waiting, wondering and being afraid now and then. Most of the time i rely on the doctors that they always do their best to help us, but sometimes, like the other day, I just start wondering what if and then the feelings are stuck in a negative whorl and then it's time to chat on the forum! Don't misunderstand me, it's okey to chat about positive things too, of course! 

I wish you all a good day tomorrow! (It's 11.10 pm in Sweden and I'm going to bed)

Hugs from Helene 

[MAlegant]

Hi,
I had a large tumor, retrosigmoid and no facial damage.  I have very slight weakness but only I notice it and I'm still hoping it will resolve.  If not, that's fine, I can deal with it.  Of course facial paralysis is a big fear, but it's almost always temporary and in the event it isn't, there a lot of procedures out there that can help.  Be well.
Marci

[Abdul G.]

Dear All,

I am so sorry to hear there are many people had been diagnosed with AN and after the operation had the facial nerve issues.

Well, first 2001 I started to feel fullness in my both ears. Than continued to feel on my left one. Thanks GOD the right one was saved, somehow.
After that fullness leaved to whistle. I went to ear DR. and they all said I am healthy and all looks in order.
But I was so annoying with the feelings I got in my left ear. And the said thing NO BODY told me to get MR scanned.
Until that time I was the healthiest person and never gone to doctor and never stayed at home due to any of illness (of course thanks GOD)

Than 2005 I advised to another DR who my cousin. So, he confirmed and I have scanned. After scanning been told to visit a brain surgery
So, we got the news on spring of 2005 that I do have 3cm tumor and been called AN located on my left side of Cerebellum.
He was good man and he didn’t worried me. And I were at the age of begg. of 30’s. and advices I should be getting operated soon or later.
And I had to do it when I am young cause the older you get the risky I have for operations and could be dangerous for many things if I keep
It inside.

We waited the right time and started to search a good doctor who can do it with success.
I went to a doctor and he looked at my scan than looked at me. I never forget this look and made me dying at this moment.
He told me the riskiness. After he examine me I quickly left and I was sooooooo down while I was walking on the street and on the way going home.
Than we found a BETTER specialist who had done many operation with success of  AN. Mr. Necmettin Tanrıover (May GOD bless him) in ISTANBUL.
So, he calmed me down and the way he examined me and treated me was great and made me to TRUST him so much. Well this is so important that
You TRUST to your doctor. When the time came I guess it was 7th of JAN, 2007 had my surgery. Operation started 08am and finished 19pm…
The reason took so long (I guess) either they worked SO SLOWLY to reach the tumor to kill it and/or it was a university hospital and I have signed that
My operation may be showing during the lessons and can be filmed.

So, the operation done and I have stayed a night at the intensive care room. I was on my conscious remembering and seeing all. The pain I was feeling
Due to long time laying there my right chest and right hips (I think they laid me down on my right) was burning and killing me.
Thanks GOD all was OK and next morning they carried me to my room. My DR came and gave me the water to drink and stood me up for a short while
And he said operation went well and all is secured in there. 

Of course before the operation he told me what I may get after the operation like facial & hearing nerve  damages. So, he said their 1st aim to keep the facial
Nerve in one piece and they would cut the hearing nerve is necessary to keep save the facial nerve. Because the tumor was holding both nerves and
to take the tumor off we would sacrifice one of it. And that should be hearing nerve. So they did. But during the operation the facial nerve damaged so much
and got thinner this is way now I am having this paralyzing issue. Of course its DEVELOPED since operation. Cause I remember I couldn’t eat and chew
and I was always biting my lips and tongue…. I do it even now but not as much as before 

So, after 7 yrs THANKS GOD I am fine strong and healthy. But I still feel the operation on my back. And Paralyzing is still on my left side of my face.
Thanks GOD I am a MAN so I can leave beard to cover it  its more obvious when I am shaved.  Of course before operation I had balance issues
And its all gone after the operation.

Well, now a days I am thinking how I can get recovered my facial nerve and get it working. I do have a friend in Paris and he had same issues
But his doctor made another operation that took off his tongue nerve and bound with face nerve so his face 90% was cured and shaped.
But he lost the movement of one side of his tongue. Of course its better than loosing the look  but he also told me that they could split the
Nerve in to two part and they can still keep the tongue nerve and bind the other part to the facial nerve to work it out.

SO ALL I WANNA KNOW TO SPLIT THE TONGUE NERVE IN TO TWO PARTS AND KEEP THE TONGUE NERVE AND BIND THE OTHER TO THE FACIAL NERVE
TO GET WORK OUT BOTH PARTS.?

Thanks for your kind listening and helping and advising us….

Cheers,
Abdul G.