Facial schwannoma newbie

[Kuz]

I am new to this site.  I am 5 months post-surgery for what was originally thought to be an AN but turned out to be a facial schwannoma which engulfed my facial nerve.  The surgeons spent 8 hours trying to take as much of the tumor and leave as much of the facial nerve as possible.  End result is that I have some remaining tumor (hopefully it will die off without any blood supply) and a damaged facial nerve leaving me with right-side facial paralysis.  It seems like there are many people who have experienced facial paralysis, in addition to the balance, hearing loss, vision, wonky head and other problems.  This forum provides both support and encouragement and I am happy I found it.  Although I get discouraged, if not depressed, with not being back to "normal", I am encouraged to read from others that improvement of our symptoms continues for years.  I pray that one day I will be back to "normal" and able to do all the things I could do before without any of the current symptoms.  Meanwhile, I may be asking a lot of questions to get some insight from others on their experiences.   Thanks in advance.

[Jim Scott]

Hi, Kuz ~

Welcome to the ANA discussion forums!  I'm sorry you're dealing with ongoing facial deficits but I trust that situation will improve, soon.  Meanwhile, feel free to ask any question.  Our members have a wealth of practical experience, as you've already noted.  We're here to inform, support and help in whatever way we can.   

Jim

FYI: I moved your post into it's own thread to give it better exposure.      J.S.

[iluuvpups]

Hi Kuz.  Welcome to the forum.  I too have a facial schwannoma and like with you, they originally thought I had an AN.  They left about 5MM on my facial nerve when they did my surgery back in May.  I have mild facial weakness.  I go for my first post-op MRI in early October and a follow-up appointment with the surgeon in early November.  Here's hoping there's no growth!  I hope your paralysis will start to resolve sometime soon.  --Carol Ann

[leapyrtwins]

Hi, Kuz.

Welcome to the Forum 

Jan

[KarenE]

Hi Kuz

You sound exactly like me!!  I too went in for what they thought was an AN, but it turned out to be a facial schwannoma.  My surgeon took the entire tumor and facial nerve out, leaving me with left side paralysis.  I got a gold weight put in and had nerve surgery almost 2 weeks ago.  This will hopefully start my face moving again in 6 months or so....to get my smile back as my youngest son says.
I went through a ton of emotions when I first found out about my tumor and then even MORE, when I found out I couldn't move my face or smile at my children.
But since then, I've been going strong and well with the love of my boys.  I am a single mom, so my mom has been helping me out until I return to work. 
When I do return, it will be without the movement of half my face (and I'm a teacher!), people look a little different at first, but then they seem to adjust really well.
I'm not sure where you are, but I'm in Texas.  Just PM me if you ever want to chat or compare!! 

Best Wishes
Karen

[Kuz]

Thank you all for your replies.  I guess we are all a little different but with many of the same issues.  I was told by my surgeons that my facial nerve was "intact" after the surgery but not as a single nerve with thousands of strands inside but, rather, with strands (like spaghetti) attached to my brain stem.  The ENT surgeon did not get a response when he attempted stimulation of those strands but my neurosurgeon, who closed me up, did get a response.  At this point I am still praying, and hoping, that some of the facial nerve is regenerated though it may take much longer than 5 months.  Meanwhile, not being able to smile at my grandsons is very tough emotionally.

Nevertheless, with the help of my speech pathologist I have learned to speak without my right side having any movement.  The "wonky head", or whatever one wants to call it, seems to have actually gotten worse over the last few months and affects me everyday.  The VOR therapist is at a lost.  The list of post-surgery symptoms is far greater than the few symptoms I had pre-surgery.   However,  whenever I get down God has a way of showing me the blessings I still have and that gets me through each day.

Thanks again for the replies.

Kuz

[Lizard]

kuz,
Welcome to the forum and sorry you ended up with a facial scwannoma, but they saved your nerve which is a great thing.  Hopefully like you said the rest of the tumor shrivels up and dies!!!  Just make sure to have your regular MRI's.  Also, in the grand scheme of things 5 months is not a long time after healing.  I'm almost 2 years out and I see improvements even now.  It will also take time to get used to your "new normal", but you will and being new is a good thing and gives you an opportunity to see your new normal in a totally different light than the old normal.  You will have ups and downs, but remember you will always climb back up.
Take care and again welcome to the forum!
Liz

[yardtick]

Welcome, I too have a facial schwannoma and mine was debulked 4 years ago.  I was lucky my facial nerve is intact and I have movement.  When I am tried or in pain one can see the the difference in my face.  When I smile the left side of my face trembles and that can cause spasms, so I try not to smile as widely as I use to.  One day I will need a nerve graft, something I am not looking forward to.  When I read how emotional it is for you not being able to smile at your precious grandson, I felt your pain.  I'm a worrier and that is something I have worried about.  I have no grandchildren at the moment, but one day I'm hoping to.

Please know that you I am praying for the regeneration of your facial nerve.  Kiss your grandson for me.

Anne Marie