It's been 4 months - but I feel like its been 4 years

[KimLyle]

Hi -

I cant believe what everyone has been though and it does help knowing that I'm not the only one but i feel like I'm one of the youngest. I'm 22 just barely graduated college cause I found out I had to have surgery my last semester SO I'm taking summer classes then ill officially graduate.  It just seems like no one my age understands what I am going though because its suppose to be my time to explore everything.  I am taking a year off and applying to grad school in one year.  I just didn't know if anyone had any ideas to deal with all this.  I am busy and try to still go out and do everything but its SO hard when I'm suppose to be SO excited to graduate college but instead I'm not I'm just researching different ways to help my facial movement and what I should do if I didn't get movement.  I just feel like people my age just didn't understand as much because its not really seen.  I was the only one with facial paralysis walking across the stage out of the entire college.  Its just hard to be single and have face issues because you become more insecure about how you look.  I just need to be stronger and sometimes its hard to do.

[moe]

Hi there,
I feel for you, being young with facial paralysis.

BUT the fact that you feel tingling is a good sign. And since your face nerve was not cut, you may start to notice little twitches. I recall people just practicing smiling and moving their face in the mirror as part of their daily routine.
It is recommended to really not do anything dramatic  for 6 months at least , and this is very hard I'm sure. The nerve just needs time to heal and progress on it's own. If you start massaging or doing stimulation (like EStem) , it may cause synkenesis down the road
(one part of the face moves when you do another function - like closing your eye, and your mouth moves).

I would think acupuncture would be ok though but maybe too soon for that. I don't know.

I know how distressing and depressing it is with facial paralysis, and there are many here who can empathize. (me being one   )

4 months post surgery is still very soon, so sounds like you really are doing well in other regards. You finished college and walked the stage and had brain surgery for a BIG acoustic neuroma, and THAT is something to be proud of!  Stay busy and your face will hopefully follow.

Hang in there, I know where you are coming from
Maureen

[steph28]

Hi

I'm 28 so I sort of know how you are feeling.

my surgery was just over 6 months ago and like you I have nearly completely no movement down the right hand side of my face.

On a possative my eye reacts with my good eye. It doesn't blink completely, but its moving. It also water a lot and it looks like i'm crying sometimes, but when I do cry there nothing. I do get sensations under my eye at times and when I try and shut the eye it feels like there is movement, but nothing that anyone can see which again is annoying. I dont know if you are experiening that?

I am concerned about how I look and I had to start a new job 2 months ago. I was so worried about everything, but I couldn't even smile at people. Thats what I find the hardest is not being able to smile.

I have found this site so useful. I did make contact with someone who had a AN removed 6 years ago and she was fine no lost of hearing or anything. Then I found out her AN was mm in size. I did found that hard to take as she was giving me hope that there light at the end.

anyway I hope thngs keep improving. I'm sure they are. As people keep telling me I'm young and that working in my favour!!

Steph
x

[KimLyle]

thanks it def helps knowing that there is someone around my age going though this. not smiling is def the hardest
and that is a good sign that you are getting radum crying out of your AN side..I would think soo because maybe the nerve is more intack then you think
and im hoping because im yonger my nerves would heal quicker hahhahha crossing my fingers

[jazzfunkanne]

Hi i have a friend in the uk who is 17 she has a AN on both sides (been told its not nf2) she had too have one removed as it was 4.5cm they are monitoring the other side, if you want her email let me know, she was left with facial palsy which is improving and starting a part time nursing course

[vickee]

I had my surgery 9/09 at 29.  My left side was completely paralyzed.  I finally got twitching movements 2 months ago (7 months post op) and can now do a half smile. I surrounded myself with positive people and tried my best to remain positive.  It was hard for me at first when random ppl would ask, "what happened to your face?" or "do you have bells palsy?"  Or dealing with the stares. I now I reply with pride, "I had a brain surgery." I don't even think about my face when I go out with friends and just enjoy the moment.

I did acupuncture and acupressure in hopes to speed the recovery process.  I'm not sure if it helped, but I felt very relaxed after treatments and eventually movement.  I put a heated seed pillow on the effected side before bed.  I also talked with a counselor to help me cope with the stress. Joining a gym helped get my blood flow going again. Also joining the Acoustic Neuroma group on facebook is helping me through everything. You've been through so much with your surgery. And to top it off, graduating college at the same time!  You're amazing! Keep your head up!

[KimLyle]

Thanks
I am also doing acupucture..im not sure if its helping but i feel like it might.. it is expensive tho..especally being a broke college graduate  hahah but thank I am really trying to stay postive and just focus on applying to grad school and take my certification test. Thanks again I know im not the only one it just feels like it sometime cause you dont see people like you or know people that been though what you have. I just hope i get movement back..even if its not soon just get it back one day. ITs just soo hard cause its soo out of my control. but im just trying to focus on the things i can control. And I live near boston and have always been a runner. I ran for college and my goal was to run the boston marathon one day and now I really want to run it for a differnt reason and that to prove to myself that I can still do after having surgery Ive ran 20 miles befor soo I am trying to get back into shape and can now run just 3 miles but its only been four months soo Im trying to take it slow. i just have soo many goals in life, I just dont want this to get in the way

[nancyann]

Hi Kim:  Keep a peaceful heart my friend,  things will get better though it's hard to see that right now.   You'll find lots of options on this forum.   My facial nerve was cut & re-attached but I never got movement back.  Had I been younger I would have gone for one of the nerve grafts, either the 7/12 jump or cross facial (? correct name ?).  Since I was 50 y.o. at the time I opted for the T3 surgery.
It lifted the bad droop I had & gave me a 'mona lisa' smile when I bite down on my back teeth.
You're only 4 months out,  people have seen movement begin even after a few years.
Take your time researching your options.  I'm glad to hear you're taking the year off for yourself.
Always good thoughts,  Nancy

[Kaybee]

Hi Kim, I was feeling the exact same way at 4 months.  I didn't see movement until almost 6 months and my face has a lot more movement and tone (now at 8 1/2 months).  I say that to encourage you to remain positive and as NancyAnn said, to keep a peaceful heart.  You may be healing and don't know it. Keep focused on your obviously bright future!  I learned that a smile transcends your mouth--you can exude happiness even with a stubborn paralyzed side.  I wish you continued healing and happiness!

[Jan D]

Hi Kim - I was 15 when diagnosed with the AN.  Send me e-mail if you like and we'll chat.   I really know how you feel right now.

The good news is that your facial nerve was not cut, so you should have a good prognosis.   

Hope to hear from you,
Jan D

[Jim Scott]

Hi Kim ~

I know I'm almost a month late with this response to your original post but I wanted to let you know that although you're struggling with AN post-surgery facial issues - which are tough at any age and even more so at 22 - the odds are with you for regaining normalcy, in time.  I know it can never be fast enough (for anyone) but I'm confident that it will happen.  As a 4-year 'veteran' of AN surgery plus radiation, which occurred when I was a few years older than you...O.K. a few decades older...all right, 41 years....I managed a complete recovery - and so will you.  I'm sure you'll be running in the Boston marathon again (I'm relatively fit for my age but just thinking of doing that makes me tired) and I hope you'll keep us informed of your progress as you continue to recover and reclaim your young life.  Thanks.

Jim