Newly diagnosed 1/12/2011

[sodiumpentathol]

Has anyone tried to attempt complete facial nerve function?  In order to do this you have to leave some tumor inside?  Is this a smart option?  Any takers on this one?  I have an AN 2.8 x 2.6 x 2.7.

[Kaybo]

Hi & Welcome!

I'm not sure what you are asking...   

K   

[nteeman]

After surgery I was lucky and have complete facial nerve funcntion and when I asked my surgeon if, as far as he could tell, he got all the tumor my surgeon replied that he was absolutely positive that he got all the tumor.

Neal

[Cheryl R]

There are several who have had a bit of tumor left so they will keep the facial nerve intact.    Usually it is thought that the blood supply has been removed so there should be no growth.     For the times there are, then radiation might be used to keep any further growth from happening.      You will have to find out what the dr you talk to likes to do.            The tumor location plays a part in it as sometimes one still ends up with facial paralysis due to what damage the tumor has already done to the nerve.       Most facial paralysis is temporary but not all.      There are some surgical ways to try and help it and facial therapy.      These are not done till a year to 2 years has passed to see how the nerve is healing and getting the muscles working again.   
  Ask all the questions you need here as we try to help.       Getting an AN is not fun but there is treatment and still life with this bugger!                                  Cheryl R

[CHD63]

Hi sodiumpentathol (interesting user name ..... must be a story here .....) and welcome to this forum.

As Cheryl said, much depends upon the specific location of your AN, as well as the size ..... whether or not it is already pressing on the facial nerve before surgery.  Only your doctor could possibly address your questions and even he/she may not know the answers before reaching the tumor during surgery.  Being removed completely without damage to the facial nerve is always the goal, but if it is a "sticky" tumor the surgeon may choose to leave the portion stuck to the facial nerve.

Are you scheduled for surgery or are you in the fact-finding/decision-making phase of the process?

Many thoughts.  Clarice

[moe]

Welcome sodiumpentathol!
Good feedback from previous posts, just wanted to welcome you and encourage you to share more of your history about your AN.

There are those who have the surgery-the surgeon leaves some of the tumor there, and then Cyber knife down the road to zap the rest. Depends on location, location, location..

Unfortunately I had to have my facial nerve cut to get the tumor, because it was a vascular tumor ~they removed the whole thing.
Let us know more:)
Maureen

[Jim Scott]

Hi, 'sodiumpentathol' Mark - and welcome ~

FWIW: Upon my AN diagnosis, my neurosurgeon presented me with a plan that would retain my facial nerve function (something I stressed was an imperative) and still destroy the large AN (4.5 cm) that was pressing hard on my brainstem.  He opted to 'debulk' the tumor, in effect, 'gutting it' down to a thin membrane and, in the process, cut off it's blood supply.  After a 90-day 'rest', I would undergo FSR treatments intended to destroy the remaining tumor's DNA and, in effect, kill it.  I gratefully accepted his plan and, long story short: all went well.  The AN was debulked, I suffered no facial mobility problems, my recovery was fairly rapid and the later radiation treatments were uneventful but effective.  Naturally, I'm delighted with the outcome, as was my doctor.  So, at least in my case, AN removal surgery with complete facial nerve function is quite possible and perhaps something you should discuss with the doctor(s) involved with your surgery.    

Incidentally, your screen name is making me sleepy.  

Jim  

[leapyrtwins]

I had retrosigmoid in May 2007, complete removal of the tumor (which was almost 3 cms) and I have full facial nerve function.

I had slight facial paralysis for one or two days post op, but a dose of steroids cleared it up.

Just my experience; everyone is different.  But almost all doctors monitor the facial nerve during surgery, which helps preserve facial nerve function.

Jan

[sodiumpentathol]

Thank you all for sharing your experience and yes I will give you more information about what has been happening to me.  In Nov. 2009 I was diagnosed with sleep apnea and I started on a CPAP machine at night.  Several months later I noticed right sided facial numbness (not complete numbness but a "different feeling").  I said to myself..."That darn CPAP machine is pressing on my facial nerve".  I had a follow up with the Sleep Apnea doctor and asked if he ever heard of this happening.  He said no.  I blew it off as this was the problem.  In May 2010, I had a bad sinusitis and went to an ENT surgeon to discuss the right side of my face (thinking now it was sinus pressure that was compressing the facial nerve).  He said it was possible.  He wanted to order a CT scan of my brain/sinuses but I refused.  He put me on nasal steroids and said if it did not work, come back in a month.  I did not come back becuase sinus pressure left and I was convinced that it was the CPAP machine.  NOW, in 1/2011 I was talking to my sister on the phone and noticed right side hearing reduction.  I got home and said...I have a problem.  I started reading, reading, reading (I'm a Registered Nurse for 20 years in ICU, ER, OR, Cardiology, Cath lab, etc)  I said... I have an acoustic neuroma.  So I made an appointment with an ENT surgeon that got me in the same day, did an exam, hearing test, then ordered an MRI which eventually revealed an acoustic neuroma 2.8 cm.  So I have had 2 weeks now educating myself about this and am working on my options.  Initially I wanted the tumor ALL OUT!!  However having time to think, I would like to preserve my facial nerve even if that means leaving some of the tumor on the facial nerve.  Thats' my story.  Glad you like my screen name and yes there is a story to it.  I got the name LONG time ago because all the other names that I wanted for a game I was playing on-line were taken.  So I said...what the heck.  What about Sodiumpentathol...I bet no one has THAT ONE!!  So it stuck with me ever since.  Real name is Mark from St. Louis, Mo.  Again thanks everyone.  Keep you posted on what happens and progress.  It truly does help to hear other people going through the same experience.

[krbonner]

My AN was about the same size when I had surgery (4.5 years ago now!).  The tumor has been 100% removed (several post-op MRIs over the years show no residual tumor at all) and I have full and complete facial nerve function.  My cheek does start to feel a bit tingly if I let myself get super-exhausted, but I consider that my 'early warning system' that it's time for bed.   

So, it is possible to get through surgery with no facial nerve problems.  But it's all going to depend on the particular nature of your AN, where it is, how well the surgeons can get at it, and the skills of the surgeon. Each of these situations is completely unique.

Good luck!  Keep asking questions!
Katie

[CHD63]

Mark .....

Thanks for the background on your situation ..... an all too familiar case of misdiagnoses.  Because of the rarity of ANs, most physicians do not jump to that diagnosis on first presentation of symptoms.  So glad you do know now so you can research your options for treatment.  Given your symptoms and size of AN, the time frame for study will probably need to be somewhat short.

If you have read much on this forum, you undoubtedly have noticed the huge importance of choosing a physician (be it a radiation oncologist, neurotologist, or neurosurgeon) with vast experience in specifically the treatment of acoustic neuromas.  This is one case where experience is critical to a good outcome.

If you have not already done so, send for the free informational materials from the ANA.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195

There is a wealth of information and much reassurance in the material.

Best wishes and stay in touch with this forum as you travel your way through the maze of information and decision-making.

Clarice

[moe]

Glad to hear more about your case, MARK

Your scenario sounds somewhat familiar to mine, in the fact that you basically were probably too busy being a caring/empathetic nurse, to worry too much about your symptoms, thinking "Oh it's probably this or that."

I did the same thing, I'm a nurse (not ICU, but total opposite spectrum- home health). My symptoms were slow and insidious. Oh, it's pre menopause, oh, it's hormones. Oh, I'm dehydrated.

Finally when I noticed the decreased hearing in the left ear, I got the audiogram, and then the MRI. I unfortunately didn't think acoustic neuroma. What a shocker  I had.

Keep us posted on your journey. We are good listeners, feedbackers!
Maureen

[Tod]

Mark,

The docs were able to remove about 90% of my tumor but eventually stopped working on because of its consistency, location and proximity of the facial nerve and others. While I did awake with left side paralysis, about three months later I had around 80% of movement back. This was enough that that few people could tell a difference. Essentially I am W&W until growth is noticed, and then we'll try radiation.

Good luck to you,

Tod