Any good news on this site?

[NotTheSame]

Almost 4 mos out from the resection of my 4.5cm AN that left the left side of my face completely paralyzed (including eye) and deaf in my left ear.  A good portion of my face is still numb too. I was told though that he nerve was intact in the operating room when they patched me up. Ive been reading this forum about the realistic chances of having my face back to normal (or close to normal) and all I can find is horrible outcomes. Has anyone had complete facial paralysis that has recovered? How about recovery of the eye? I've been told that my face still has a good amount of "tone" so the doctors are hopeful. Is this a load of **** or do I have something to look forward to? I'm relatively young (32yrs) and the thought about living the rest of my life like this is extremely depressing. Thanks.

[Mimispree]

I am six months out and have total paralysis on the right side with absolutely no tone.  I've been told it can take up to 24 months for the facial nerve to recover.  Many posts on this site share about recovery in less than a year or maybe eighteen months.  If your nerve isn't severed and you have some tone, I'd hang in there.  I am.  It will give us a rare perspective on how we perceive ourselves.  My mantra most days is, "Patience."  There are days when it just gets to you though and that's totally normal.  Being 32 and having to go through this sucks, and I'm so sorry you have to deal with that.  I use this forum as a venting zone during the really bad days and it helps.

[NotTheSame]

Thanks for the reply. Can you link to some success stories because I am having a hard time finding them, all I see to find is horror stories about everything that can wrong.

[NotTheSame]

this post seems to be getting a few hits but not many responses. I am not liking my odds now 

[CHD63]

Hi NotTheSame .....

I was hoping others might reply to your post with their success stories.  Many times patients recover, go on with their lives, and do not continue to post on this forum.

I hope your doctors told you going into surgery that the cranial nerves are very sensitive nerves.  Even a tiny brush against them can cause them to "go to sleep" until they recover from the touch.  Four months out is a relatively short time for recovery to take place.  I know it is extremely difficult to be patient and wait.

You might want to contact Jacqueline Diels, who is a highly respected facial reanimation specialist to get her opinion on your case.  See:  http://www.facialparalysisinstitute.com/Our_Team.html

There is also a thread here on the forum about her:  https://www.anausa.org/smf/index.php?topic=14483.0

Following my second surgery, I had mild facial weakness, which gradually resolved over a period of months.

Please seek some additional advice from professionals.  At four months out, it is not a done-deal by any means.

Clarice

[Mimispree]

I find your remark about "horror stories" offensive.  My challenges due to a brain tumor do not constitute a "horror" story simply because they are difficult and I choose not to see my story as a horror.  Life is often about getting through one challenge to face another and it is rarely sensitive, similar to your choice of words.  Success stories can be found under the most dire situations and some of life's best experiences happen because of unfortunate circumstances.  Therefore, a broader definition of "success" may prove useful and you may find the comfort you seek in the gracious way others find success in times of difficulty.

[Smedina]

Patience is key to recovery.  I think of this whole AN experience as my master-class in patience.  I've heard time and again how slow the healing process can be-especially for nerve injury, and at this point I can attest to the power of allowing yourself the time to heal.

I was 36 when I had my (first) surgery.  I ended up in the hospital for the better part of 3 months (including Thanksgiving, Xmas, & New Year's).  I mention this only for a bit of perspective. 

My recovery has taken a lot of time and a lot of work.  But considering that I've been told the doctors were just glad to get me safely off of the operating table after that 1st surgery, I'd consider myself a success story.  Is this the outcome or path I expected or would have chosen?  Absolutely not.  But I'm still here, and the deficits I was left with hold me back a little less every day. 

My facial nerve was severed in that first operation, as the surgeons raced to save my life.  I had a hypoglossal nerve transfer a few months later.  It was a few months before I started seeing the benefits of the surgery.  Now, the tone on the affected side of my face has improved immensely and I can now generate movement in my face.  I'm aware of things being "different" than before, but I think it's a lot more "different" in my head than in the eye of the beholder.

I've worked with Jackie Diehls and cannot speak highly enough of her.  I'd recommend contacting her for some insight into your own case.

[Warr76]

I haven't had the complications that you are dealing with but I am very sympathetic to your issues. 4 months is pretty new for recovering and have heard that the facial nerve can take a while to get better. You are very young to have to go through this. So please hang in there! I'm only 10 weeks out with some major headaches daily but hoping it gets better soon.
My doctor said to think of it as training for a marathon. Eat well, vitamins, nourish your brain, walk, take care of yourself!
I don't know if this helps but wanted you to know that you are in our prayers for a great recovery!

[NotTheSame]

Many times patients recover, go on with their lives, and do not continue to post on this forum.

CHD63: I was/am hoping this is the case. And to answer your question, no my surgeon didn't really about the facial nerve before the surgery. He did mention that i would most likely lose my hearing though and I am still having a hard time coming to accept that. I didn't have much time between my MRI and surgery (1 week) to shop around and/or look into the complications so you can imagine my surprise when I woke up and found out that my face is paralyzed.

Mimispree: By no means was I trying to be offensive and I'm sorry if it was taken that way.

[keithmac]

In my view it's better to have information - even the bad stuff - than remain in ignorance.  It's the nature of humankind that when they've recovered they happily disappear from this scene so there's likely to be much more good news out there than we know about.

I feel for you as I feel for all of us with this condition.  It sucks when you're old and it sucks probably even more when you're young but just being here means you're not on your own and that can help when things get dark.  It seems you weren't prepared by your care team as well as you should have been and that's a shame but you're in the right place to get much valuable insight and experience and this is already evident in this thread.

Good luck and good recovery!   

[saralynn143]

A couple of thing for you. Here's a helpful site from Harvard concerning post-surgical facial paralysis: http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm - pay special attention to the paragraph beginning "Facial nerve is anatomically intact, stimulates at low voltage, but no movement immediately after surgery."

There are plenty of success stories here if you look for them. As an example, my avatar picture was taken fourteen months after waking up with complete left-side paralysis. Now six years after the fact, the casual observer can't tell anything is wrong with my face although my smile is not perfectly symmetrical and my blink is still incomplete. I have an eyelid weight and wear a scleral contact lens and go about my business.

Do a search for a post by Jeanlea. I think it's called Facial Progress. She had to wait nearly a year for any movement at all, but ultimately had what I consider to be phenomenal recovery.

I wish you well in your own recovery.

All my best,
Sara

[Mimispree]

Dear NotTheSame:

I'm sorry if I took your comments too personally.  I think I keep telling myself the facial paralysis is a minor concern, and every now-and-then some of my deeper feelings come to the surface of my emotions.  I know exactly what you mean by success and horror stories and I was wrong for not being more sensitive myself.

As I wrote you beforehand, let's hang-in there and know that we have very good odds of fully recovering, if not on our schedule.

[Jill Marie]

Hi

As others have mentioned there is good news on this site, but you have to look for it as many people come to this site and move along when things get better.  Most of the people that posted here when I started posting 8 years ago have moved on to other things in their lives.  I've been told that some of them still get together on facebook, I don't have an account so don't know for sure. 

I still read the posts so I can try and help those that have just started their AN journey and to keep my eye open for new information that can help me.  If it wasn't for this site I probably wouldn't be working now, would have filed for disability and would be existing not living. 

I was 35 when I found out I had an AN tumor, scheduled for surgery 6 weeks later.  Two weeks after diagnosis I broke my leg and was in a non-walking cast for 3 months.  Married with 2 young boys to take care of.  I was suppose to have a pre-op visit but couldn’t make it because of the complications with my leg.  The day before my surgery I found out that I had a facial nerve tumor rather than an acoustic nerve tumor.  They would be severing the facial nerve.  It would take about 6 months before I would see any change in my facial movement.  They told me my eye wouldn’t close or tear but I should have tearing after a while.  They said I wouldn’t be able to drink out of a straw.  When I woke up after surgery my eye closed most of the way when I closed my other eye, eye didn’t tear, still doesn’t.  Tried to drink from a glass while eating dinner, couldn’t do it.  My husband suggested I try a straw, I told him they said I couldn’t.  He got me to try it anyway, sure glad he did, the straw worked just fine.  My point here is that every surgery is different and so is the outcome, the doctors can tell you what they think will happen but they don’t know what will actually happen. 

I know it’s hard but you have to wait and see how your nerves recover.  You had a big tumor but they didn’t severe the facial nerve so you should do ok.  My nerve as I mentioned was severed, at rest my face looks normal, grin fine, smile not so good.  Perhaps there are surgeries I could try to improve my smile but to me it’s unimportant, I smile with my eyes and with what I say.  My main issue was my eye not tearing, it became very painful and expensive.  I have the scleral lens that Sara mentioned, got it 2 years ago.  Found out about the lens on this site, none of the eye doctors I had seen knew about the lens.  No more pain or spending $4000. a year on ointment! 

Yes dealing with this can be depressing, I’ve thrown a few pity parties.  Life is good now, married 38 years, 23 years since my surgery, worked at the same job for 20 years.  Wish I hadn’t had a tumor sure!  Kept me from enjoying life, no way! 

We are here to help you tell you too, no longer need this site!  Jill Marie

[Joe_L]

I hope you can start to see some signs of improvement soon. I had a large AN removed about 6 months ago, with some numbness and facial paralysis. I am deaf now in the left ear, but really not too concerned about that. Nothing you can do about it. However, I had pretty much given up on my facial paralysis and a couple of weeks ago I noticed some movement. My facial tone is improving, and it's more symmetrical. So know that some of the side effects may get better, but it can take much longer than a few months.

Joe

[NotTheSame]

Thats great Joe L. How is your eye doing? Blinking well? How about the numbness.

I too am deaf in my left ear and I try and tell myself it doesn't matter but its quite annoying. Looking into BAHA as a possible solution