Hurting

[micca82]

Hi everyone,

It's been only 6 weeks but I'm getting impatient already.
My stubborn double vision just won't go away, my face is numb and frozen.
I thought I had mentally prepared myself for facial paralysis pre-op, boy, was I wrong.

Although I came out of surgery with my left face paralyzed, my face didn't droop. Until last week, I tried hard to focus on this and think of it as a positive sign that my face will come back, hopefully at a faster pace. But now as another day passes by with no sign of improvement, I've started to focus on negatives. My surgery report says my facial nerves were noted to be in continuity anatomically,but the nerves stopped responding in the late stages of dissection (of tumor).

This really discourages me. I desperately looked for a story from folks who's had similar surgery outcome as mine and had good/excellent recovery, but couldn't find any. Does anyone know any? I had a retro for my 5cm AN.

Any reply is greatly appreciated.

I keep telling myself 'considering the size of my AN, things could have been worse' but it doesn't help me feel better.
When will this end?

I'm hurting. Hurting so much. 

[moe]

Micca,
I'm so sorry to hear about your facial paralysis along with the double vision. Especially given the fact you have 3 little ones to watch over, how overwhelmed you must feel
Wanted to offer my support and just give you a big cyber hug!

 What does the surgeon say about the double vision? Some people on the forum have been given steroid in this instance. I would imagine there is still some swelling going on in there.

6 weeks is still very soon, and many people see movement months after surgery. So don't give up hope! It is nerve wracking, but patience is needed with the facial nerve rejuvenation. Being that it was NOT cut (unlike mine), if it doesn't respond, there is always a nerve transposition (12/7 nerve transposition)~ but that is only if there is minimal improvement.

I truly understand the angst about the facial paralysis. I hope you get some relief for the double vision~call or see your doc OK?

Hang in there
Maureen

[ksiwek]

Hi there!

My heart goes out to you...

I had a large tumor, too, but without the facial paralysis.  I know what the facial issues were like prior to surgery and can only imagine how tough it must be to be faced with it post operatively.

I am almost a year post op and my eyes have improved dramatically.  I still have nystagmus issues, but they are so much better!  I can tell you that it does take time.  I know that this is hard to hear.  I couldn't open my eyes for 3 days post op and could barely look ahead to walk.  I vividly remember how hard it was to even glance at a computer screen 2 weeks post op.  But as weeks and months past, things slowly got better.  I exercised (walked) often, practiced looking side to side and did eye exercises.  I put up large font words on walls around my house and practiced gaze stabilization.  I still practice in different ways daily.  However, at 6 weeks post op you don't want to push it.  My neuro PA told me that my brain would be recovering from swelling for a long time...I think she said up to a year.  I have noticed in recent months that sometimes my affected eye will figure out how to cry tears!   Also, have you visited a neuro-ophthomologist?  He/she may have suggestions...

Having patience with your recovery has been one of the hardest things about the post op journey.  Recovery is in months...I am still seeing improvement!  Hang in there and find good sources of support....like this forum.  I did go see a therapist to help with the post traumatic stress.  Also during my first few months of recovery, I kept a journal and it helped.  I even rated my days.  You might be surprised when you go from 3's and 4's to 5's and 6's.  It is hard to recognize progress sometimes.  I told my support circle to let me know and encourage if they saw improvement in something no matter how small.  It really kept me going.  I also, with the help of my husband, made a list of things I would like to do in the short term and long term.  It can be simple, like walking for 20 minutes or lunch with friends....whatever gets you motivated to enter back into some normalcy.

Wishing you peace in your heart and strength in recovery...

Kris

[mk]

 Hi,

You had a very large tumor removed and it is not uncommon to have many nerves involved. In addition to the facial nerve, you probably had 5th (trigeminal nerve) involvement, which is responsible for the numbness you are feeling. It is also not unlikely to have 6th or 4th nerve involvement. These are the nerves controlling the eye movement - the 6th nerve from side to side and the 4th nerve from top to bottom. While these nerves recover, it is not uncommon to have double vision. The good news is that it usually recovers after a few months by itself. In the meantime, if you wear prescription eye glasses the optometrist could attach prisms to the lenses to help your vision. Others just prefer to cover the eye.
As for the facial nerve, since it is anatomically intact there is a big possibility of recovery. 6 weeks out is still very early, usually improvements start to show after a few months. I can only guess how hard it is, especially with 3 little ones. At least try to get as much help as you can and to let your body plenty of time to heal.

Marianna

[leapyrtwins]

Micca -

you had a large AN and facial nerves that are damaged take time to heal.

Although it's hard, hang in there.

We're here for you,

Jan

[deheisel11]

Micca,
Today is my first anniversary of my translab surgery.  Unlike your face, my face really drooped after surgery.  My facial nerve was intact but sending electical inpulses at a very limited frequency at the end of my surgery.  I started to see improvement after 6 months and pretty much had symmetry after 7 months.  Every month since then I have seen small improvements.  My face now pretty much looks the same as before the surgery except my eyelid still droops.  The muscles around my eye are beginning to move.  Give yourself several months and then compare how much you have improved.  I am betting on that you will see  improvement.  Best wishes on your continued healing.

Dave

[MARAKI]

Micca
I can understand what you are facing with facial paralysis, because I have the same problem with you! I had an 3cm tumor but because of the position of the tumor the facial nerve was cut during the surgery and it was replaced with nerve from my feet. It is hard and especially if you are woman. I saw the first movement after 6 months so you have to be patient because nerves are healing so slowly! Now I am a year after the surgery and the improvement is shown. When I am calm nothing is obvious, except the eye which has tarsorraphy. When I speak or laugh there is little assymetry and the eye doesn;t close completely.
Just think positive! Please! And laugh with your heart even though your face doesn't participate.
Somedays I feel miserable too and I think it is normal but the important is not to give up!
I hope you the best!
Maraki

[saralynn143]

Micca,

Having your world turned upside down stinks. I well remember that at six weeks I was still depressed about my appearance. Like many posters here, my nerve was responding throughout surgery, but I still woke up with total paralysis on the left side. My surgeon even told me he had a bad feeling about my nerve, and gave me the name of a neurosurgeon back home (I had my initial surgery in Detroit) to consult about a nerve jump.

A couple of months post-op I consulted a facial nerve specialist at Washington University in St. Louis. Despite a negative EMG, he said he could see slight movement by my nose, told me to not to do anything with my face for a year - no stimulation or physical therapy of any kind. He turned out to be exactly right. At three months I could see the movement at the side of my nose (snarl) and at six months the tiniest bit of movement by my mouth. By a year I had symmetry at rest. Fourteen months post-op I went to the ANA symposium in Chicago, where Kaybo snapped my avatar photo.

I am approaching three years post-op. My smile is crooked, and I doubt I ever get my big grin back, but most people, other than doctors and me, do not notice anything. It's been slow, but I think I still have improvement ahead of me.

I had many, many bad days at first, and would not allow any pictures until three months out. Now I regret that because I will never know exactly how far I have come.

I understand your feelings, and I am sorry that you are going through this. It stinks, and I think it's important to acknowledge your feelings about that, even with the knowledge and hope that it will get better. Vent whenever you need to. We'll be here to commiserate and rejoice with you all the way.

[Tod]

Micca,

I had a similar-sized tumor mostly removed in a 32 hour surgery. The left side of my face was completely paralyzed and I had double-vision. It was seven weeks before I got even the tiniest hint of movement. Within a couple of months of that I could pass for a normie.

The body has its own schedule to heal. Often it is more of a calendar than a schedule, but healing usually does happen.

I am 15 months post now, but life is exceedingly good. The only way people know I have had a problem is when I speak, but my voice improves weekly.

Be easy on yourself and try not to not get fearful of the future...it is still early.

-Tod

[mandy721]

Hi,
I had a 3.1cm AN excised (retrosigmoid approach--type surgery) in August 2009.  Similarly, I have had a rough recovery.  Many similar symptoms.  Re:--your face:
If my experience is any guide, you should not expect any improvement at all in the first year or two.  It took 18 months for me to see a tiny bit of muscle movement.  Now,, almost two years later, I have a bit more.  Your AN was so large, I'm guessing it will also take many months (maybe years) for your facial nerves to heal along all along the length of the face (even if it is intact, the nerve covering must heal...and it heals VERY slowly).  And also keep in mind that---even after the nerves heal, you may have to work to reacquaint your brain with the specific muscles of the face--on the affected side.  You may want to contact Jackie Diels in Madison Wisconsin (University of Wisconsin Hospital).  She is a facial-rehabilitation / retraining therapist--(runs the UW Hospital's neuromuscular retraining clinic) and as far as I know--she is one-of-a-kind in the U.S.  She does miraculous things.  I couldn't find anyone in the New York City area who does she does.  I have started therapy with her, and I feel hope for the first time in two years.  Her email is:  jdiels@uwhealth.org.
After six weeks, I would not give up hope at all.

[opp2]

micca, I'm so sorry for all that you've been through, are going through, and have ahead of you. I wish I could snap my fingers and make it all better. Because I know I can't, please open your arms and close your eyes, and feel the cyber hugs we are all sending you. Each of us would hug you and transfer some strength for you to use when your supplies get low. We are here, some feel your pain as acutely as you. You are not on your own.

[Kaybo]

Awww...opp2...what beautiful words...so wonderfully put!

Micca-
I'm so sorry that you are hurting, I really am. You probably have the most empathetic audience here. You are VERY early on in your recovery...it is hard, but try to be patient & look for something positive everyday. It can be big or small!  Hang in there - it WILL get better!

K 

[HJY]

Hi!! 
I'm so sorry that you are going through this. I have three little kids too - do know how tough it can be to get through this and be a good Mom! 
I am much the same as you - facial nerve intact but not responding at end of surgery. I also did not droop hugely. It was very noticeable when I smiled, talked or cried. I had the whole dead fish eye look with the eye on the paralyzed side. 
About 8-10 wks in the tone began to improve and the twisting of my top lip was less when I talked. my eye was a little less 'stary'. Between 3 and 4 months I got more and more tone and mastered drinking without a straw!  Big thing for me! I also got a teeny twitch on my left chin near my mouth. 
I'm now 6 mths on Monday the 6th!! I have a definite Mona Lisa smile with no effort - it's easy and natural. My eye and face at rest look completely normal. My eye has life and expression when I smile - and wrinkles again!!! I have met secer people recently that did nit even notice anything was wrong! I am not yet 'me' but I'm sooooo much better than post surgery. 
I'd really like to encourage you that thongs will change. I remember being exactly where you are - just unable to believe things would ever improve. I had my surgery when my little baby was only 7 weeks old and finally last weekend I had a photo with him where I didn't even think about my face. It's lovely! 
You will get there! I'd encourage you to take videos and photos each week - sone weeks you won't be able to discern change bur when you review the pics and video you'll see it!!
All the best!
Heather 

[HJY]

By the way - my surgeon said that in his experience one of the best indicators of recovery is tone and increase in tone, followed by movement. You DO have tone do that's a great start!

Take care,
Heather

[nftwoed]

Micca;

  Just 6 weeks out from surgery of a large AN and you probably still have some swelling in the surgical area. That is evidenced in no immediate facial droop. Your facial nerves are intact, I believe.
  I've read one story of as many as 4 years of compensation. I believe 1 or 2 years is more reasonable for regaining strength to an obviously previously very compressed facial nerve.
  An Opthamologist may be able to help you with the vision problem if it is fairly consistent.
  Hang in there and be good to yourself and congratulate yourself for enduring all, OK?
  I believe you will see improvement yet this Summer as the swelling subsides. There is internal, tissue swelling of course.