fear of facial paralysis

[KC2]

Hello, I was diagnosed last year with AN of my left ear at 4mm size. The recommendation from the neurologist at that time was surgery. I have recently had a repeat MRI which shows the tumors growth. I know what the recommendation will be. Aside from the actual surgery my biggest concern is facial paralysis and not hearing loss.

I am a sign language interpreter, so I am fluent in ASL (American Sign Language). The possible hearing loss doesn't concern me too much, but the facial paralysis does because of how it will effect me doing my job. Most of ASL grammar is in facial expression. So to take away even partial use of my face is taking away the profession I love. What will I do? I have read some of the posts here and I am not encouraged. I can't afford to take the time off of work for the surgery muchless for years because my face won't work. Interpreting is my livelyhood. 

concerned,
KC2

[Debbi]

Hi KC2,

I understand your concerns and I think most of us have at least some anxiety about the risk of facial nerve damage.  Although there is no "sure" guarantee that you won't have some sort of facial weakness, your best chance is to find a surgical team that does a LOT of acoustic neuroma surgeries.  When I was going through this process, I was looking for a team of surgeons that a) had worked together for at least 2 years, and b) who did at LEAST 50 of these surgeries a year.  By the way, those numbers aren't based on anything other than my personal choice. 

Because your tumor size seems to be fairly small, I wonder if you've considered gamma or cyber knife radiation?  There seems to be less risk to the facial nerve with radiation, although others on this forum can probably comment on that more specifically than I am able to.

Hope this helps, and best of luck!

Debbi

[ilsemor]

wOW!  It is really small, maybe wait and watch the growth, the risk of facial paralysis increases as it continues to grow, but then again how can they remove something so little without hurting the nerve. 

There are a lot of things to consider here, please do a lot of research and get different opinions.

Stay connected to this forum, I wish I had done it before my surgery, it has a million answers to our unusual questions 

[Cheryl R]

KC2, It may sound here like most end up with facial paralysis but many do not.    Most who do have temporary paralysis or not even what I would call full paralysis but some facial weakness.      Many with issues are the ones who stay on here either to help others or to look for answers.      Many, many have surgery or radiation and then are gone from here once have recovered well.  Yes they may have the hearing loss or balance problems for a time but other than the hearing, it does improve in time.          I had paralysis for 3 1/2 mo past my first surgery.     It returned to movement  but did have some tightness later.          I was found in time to have NF2 and one tumor was a facial neuroma with surgery and the nerve severed but a nerve graft done at the same time and several months later did have movement but I did not end iup with complete movement.    I look ok at rest.       I would be concerned too with your occupation.           My last surgery due to tumor on my other side did not end up with any facial paralysis.
It can be a worry but it is not an absolute guarantee that it will happen.                     I was off 2 mos as a nurse for my surgeries and had retired prior to the last one.      Some people are back in the job 3 weeks to a month and some much longer.      Our recovery does all vary from person to person and the amt of activity you do.     There is fatigue past surgery and that varies too from person to person.                       Good luck in how it goes for you.                   Cheryl R

[Jim Scott]

KC2 ~

Debbi and Chery have offered cogent explanations and sound advice so I won't repeat them but I will suggest you read both posts carefully and realize that while facial paralysis is an unavoidable risk of surgery (and radiation) it is not guaranteed.  For what it's worth: I underwent retrosigmoid (debulking) surgery (9 hours) for a 4.5 cm AN, followed by 26 radiation treatments (FSR) 90 days later.  Both were successful.  The tumor was effectively reduced in size and the radiation appears to have permanently stopped it's growth.  I'm happy to report that I did not suffer facial paralysis from the surgery or the radiation.  I'm not an anomaly.  Other AN patients that post here had a similar experience.  We're a AN patient support site and that means we have a lot of members that are seeking information and advice because they are experiencing some form of post-op issue.  Often, that is facial paralysis.  Keeping that in mind, you'll note that many of our members have positive stories to tell.  I'm one of them and I hope that, eventually, you'll be one, too.  

Jim

[leapyrtwins]

KC -

although you said your AN was 4 mm and now it's growing, you didn't say how large it currently is - unless I missed that in your post.

Why did your neurologist recommend surgery?  Is it possible he only does surgery?  Or was it based on the location of your AN?  Sometimes location has a bearing on whether docs recommend radiation or not.

Even if your AN has grown a lot from 4 mm, it should still be within the range where most docs will radiate it (typically less than 3 cms) if that's what you want.

Keep in mind that docs who don't do radiation, usually don't recommend it - and, in fact, some of them will pooh-pooh the idea.

I was lucky enough to be referred to a doc (neurotologist) who does both radiation and surgery and he gave me the option and also gave me the pros and cons of each procedure.

My thoughts, if you are afraid of facial paralysis, maybe you should look into radiation.  The risk of facial nerve damage should be less.

Best,

Jan