5 Months in, I guess I just need some encouraging stories examples etc.

[Ramenedish]

Hello all

I am from South America. I am 20 years old and had AN diagnosed in this year (2015).

My only symptom was a loss of hearing for about a couple of years but couldn't check with the doctor, you know, busy schedule studying and working and trying to get into Dental School etc. When I was about to take exams I started with super long headaches and my eyesight was super distortioned.

I had to quit my university and got surgery on June. It was a 5.5 cm tumor and 70% of it was removed. I am expecting to gather some money to have a radiation surgery later in this year perhaps december or starting 2016, as my plans are getting back on university and starting over.

Anyway, my doctor's expectations were blown away when 2 weeks after getting out of the hospital (spent time in the hospital 10 days), I was already walking about and doing some things on my own (I am the worst patient or sick person ever, I hate lying around). His hopes were that in 3 weeks some of the patients get their face movement back or all in all 3 to 6 months. I am currently just doing some facial exercises but that's it and it's been 5 months, I still can't move my right side of my face, can't close my right eye fully (blinking or closing it really hard, although my mom said she saw it shut completely when sleeping) and at least I don't see any difference whatsoever.

Also, some numbness in the area of my scar, does the feeling ever come back?

I guess if some of you could share your face stories or guide me with something you did or anything. Thats my only problem. I don't care about hearing right again or the humongous scar bcause it's hidden in my hair but I feel very  shy about my face and it gets in the way of having a normal night out or speaking with someone and not thinking "d--- my face looks weird"

Thank you for reading.

[jaqiday]

Hi
I am going into my 8th month post op to remove a 3.5 an from my right side. I had retrosig surgery on March 9. The tumor was debulked to a sliver. I was left with ssd on the right side, tinnitus and facial paralysis.

I was getting very discouraged like you are up to around 6.5 months. I hated looking at my frowning sad face in the mirror every day. I also was dealing with a lot of balance issues. I wasn't leaving the house much do to the balance issues and just not feeling up to myself.  Once I hit 7 months there was a dramatic change in how my face looks. I still do not have much movement, but most people cannot even tell by looking at me that anything is off.  I also have a scleral lens now to help with the dry eye.

I am finally starting to feel closer to my normal self. I will never be 100% as I was, but life is finally looking a lot brighter.  I can now go out and not think much about how I  look.  I haven't done any facial exercises as they don't seem to help. Now I mostly just stretch my jaw when it feels cramped. The feeling around my scar has continued to get more feeling as time goes on.

So hang in there, it will get better.

[millie]

Hang in there, Ram…you may want to read up my posts…they may help you…I had trans-lab three years ago for removal of an acoustic neuroma…about 2 cm…NYU…after three years, my face is better and people say I look fine but I always feel a pulling when I speak and of course we emote as we speak so it's a constant reminder….I am going for some Botox injections next week to relax the snykenesis…
Good news is MRI shows tumor all gone…I deal with the SSD and off balance feeling (like I've had a glass of wine)  but I **** myself fortunate…
I think facial nerve healing takes a  long time…my doctors don't want to see me for two years.
Good luck and I think younger people heal better…oh, and I have tears and my eye blinks fine…just sometimes waters more and synkenesis makes it a different shape from the good eye when I smile….can't lift that eyebrow either….but still can feel pretty!   That's something!
Blessings!
Mil

[Ramenedish]

Thank you both for your words. Like jaqiday said, I don't think the exercises help. It just doesn't seem to move when I tell it to, and how could it? It doesn't have any movement or nerves controlling it since my doctor said that my nerve was swollen (or smething) and it would take a long time to recover.

Anyway, does electrotherapy work? They tried that for a while but I couldn't stand the electricity. Also it was rather expensive for +1 hour  of massage and electricity. They tried to use Leukotape K but I don't think that's useful either, any thoughts on that?

Also, millie, it's not like i don't feel pretty or something, it's just those moments of pain or weakness, sitting on a chair eating or hell, going to the bathroom, then thinking "Remember that time when you walked down the street with your friends and you told that joke and smiled for like 30minutes? Good times", and then thinking "Well, you can't smile like that anymore so forget about it". My brain sucks. Suddenly i forget all that and think that I am better now and I am not dying or anything but that's sort of what's happening inside.

[Kristena]

I always point to Mark Ruffalo's story on the home page. His face started to show signs of movement after 10 months and is fully recovered. There's hope!

I think he said he only used acupuncture. Most people don't recommend any electro-stimulation, as it may cause the nerves to heal incorrectly and cause synkinesis.

[alabamajane]

Hi,,
I'm so sorry you are dealing with facial problems at such a young age,,, it's VERY hard at any age but I have empathy for you. You did have an extremely large AN and I'm quite sure you were experiencing extreme symptoms ,, so it is good you had it out. If the Dr indicated the nerve was just stretched or swollen and not severed,, you may see vast improvement within the next couple of months. It does take a long time, sometimes 12-18 months for the nerve to heal. Patience is what you need most! It's very hard I know as I had my nerve severed during surgery and a second surgery to graft the remnant to another nerve. That was 4 yrs ago this weekend. Now you can't tell to look at me that I have paralysis until I talk or smile. I don't expect to get either back but then my nerve is "patched" and yours is not so keep the hope!!

As far as electric stimulation,, it is not generally recommended,, but you can do light massage to your cheek area yo stimulate the muscles and help get tone back in the cheek area. I lightly rubbed up and outward whenever I thought about it to help keep tone in face. No one told me too,, so that's not "Drs orders",, just my suggestion,,, ,,also, try to smile and raise eyebrows and close eyes and "remind" muscles and nerves what to do. That can't hurt either. But nothing exaggerated or too forceful until you begin to feel tingling in face. You will notice one day that things are happening.

I wish you the best,, and try not to be too hard on yourself. I know that is easier said than done from experience,,,you have a grieving period to go through for what once was,,, but you must accept it and move forward,,, you have MUCH to do and MUCH to contribute still!!

Prayers and hugs,,
Jane

[OneHourVideo]

Ramenedish,

I have a great story to tell you that may be just what you need. My surgeon said that he was unable to locate my facial nerve. I had no facial movement at all since surgery and based on my surgeon opinion, he did not believe there was any chance for my facial nerve to recover. He said that in his career, he has not ever never not been able to locate the facial nerve during surgery. He felt it was because my tumor stretched it so much, that basically it was just small fibers and not defined enough to stimulated during surgery.

I went to speech therapy to be proactive and the doctor indicated because I did not have any movement that she did have anything to work with. I stopped taking the nerve vitamins a friend said I should take and I was scheduled for a 12/7 anastomosis surgery on November 19. However, Sunday October 25, I noticed a little movement in my face. I tried to move my cheek with little success, but that was far more than I had ever had previous. Over the past few days, it has become better and better day by the day. All my friends and family have seen a major improvement over just 5-days. I met with my surgeon on Wednesday and he was amazed at my recover and he cancelled the surgery for now and we are going to revisit the topic on December 21. However, it has steadily improved over the past 5-days. I would say that I have improved 30% of normal in just 5-days, without any special medication or treatment of any kind. Just to be clear, it took 223 days (7.43 months) before I had anything positive results. So, trust me that it can happen when you least expect it. I was going to have the surgery sooner, but because I teach at the local college I did not want to have to deal with trying to communicate with a tongue that was sore or swollen.

So, don’t stress, give it time. I believe patience/time is the best medicine you can give yourself and your recovery. I know that is hard to hear some time, but I am a perfect example that anything is possible. I will believe for you and me that your situation will improve. You are at the perfect time for your recover to begin.

I really hope everyone has a great weekend.
Chris