Facial Nerve Schwannoma - Surgery, Gamma Knife, or wait and see?

[RubesBYU]

Hello all,

I was diagnosed with a Facial Nerve Schwannoma back in 2008 and have been watching it ever since.  So far so good - very minor hearing loss but it has def. grown and I can feel it with my hand (my face is not swollen).

Have any of you heard of a point when it has to be taken out (e.g. pressure on the brain)?

I am 33 yrs. old and don't think I want to do gamma knife.  I hope to wait and watch as long as I can and I I don't have any symptoms...why take it out?  Right? 

Thanks!

DR

[epodjn]

I had a facial schwannoma. In hindsight I wish I had gotten to a surgeon sooner and had it taken out sooner. Mine got to be 3.2 by the time it was taken out. It was pressing on my brainstem and causing some breathing abnormalities. I was so busy taking care of everyone else I kept putting off going to the doctor until I knew something was seriously wrong. The smaller it is the less complications you will have. Find a good surgeon and get a second opionion.

[v357139]

I think facial nerve schwannomas are even more rare than acoustic neuromas, and they require special care.  I believe they usually do not take it all out, to preserve the facial nerve.  I'd make sure you have someone who is very experienced.  I agree that several opinions would be good.  Also, when was your last MRI and is it growing?

[mattp]

Hi DR,

I had a facial schwannoma, which was unfortunately cystic. I had it re-sected in June of 2011, and by March 2013, it had double in size and I was needing another operation to have it completely removed. I have complete paralysis of the left side of my face. If it's not growing, I would definitely encourage leaving it as long as possible. Obviously the operation is not much fun, and the permanent paralysis of your face is not great either - although obviously small in comparison to loss of life!

There are many ways that you can have the paralysed side of your face re-animated, and I can now produce a smile by biting down after I had a masseter nerve transfer. I would caution against leaving it too long, as the side effects can be downright deadly. Mine grew to a whopping 5-6cm, which was putting extreme pressure on my brainstem.

If you have no symptoms, hold off. But be careful. And if you feel any type of symptom, be sure to report it to your specialist.

Hope that helps.

Cheers,
Matt

[v357139]

If you wait and watch, make sure you get periodic MRIs.  Need to make sure its not growing, even if you have no symptoms.