Stupid Paralysis.

[InnerGrace]

  So.. this is the first time for me to post since my surgery on May 30th.  I ended up with HB 6 facial paralysis.  Although I knew that this was a possibility, I didn't allow myself to even believe that it could happen to me.... so unlike the loss of hearing I obtained, I was stunned to say the least when I woke up and had the paralysis.   Monday will be 3 weeks out.. and I have scoured this website and probably have read every paralysis thread that there is.. and I know.. that 3 weeks out is WAY WAY WAY early.. and I know my best friend is patience...(or is that enemy???)  Days after my surgery, I felt twitching around my chin/lower lip and I felt the ant like crawling underneath my skin on my forehead.. I really haven't felt anything since.. maybe some weird aching from time to time.  My eye is probably the worst thing right now... I did not opt for a gold weight as I (as my neurosurgeon said as well) am hoping for God and nature to be my medicine and cure....and to be quite honest, it's tolerable....(I suppose).....I can get away with using the lacri lube 4 to 5 times a day... eye closes on it's own with a little nudge at night time.  But it's frustrating to the extent of the blurriness that the lacri lube produces and i get frustated cause I can only wear one contact... just..over all.. very frustrating.  I am finding I'm having my good days and bad days... Today was my first day out (besides my follow up appt at the docs) out in public.  I took the kids to see "Finding Dory"...however, I didn't drive.  I even went to the desk and ordered the tickets and snacks.  I was proud of myself, yet wanted to cry at the same time.  The movie was ok...lol  Well, wait.  The movie was really cute... but being there was ok.  It was odd with the SSD.  I had two of my kids on the left of me..(bad side).. and two on the right side of me....lesson learned.  And the eye started getting dried out a bit faster in the theater then it would have if I were at home..... but all in all, a good trip that I'm glad I made but it wore me right out.  When I visited the opthamologist last Tuesday, she told me that she could see that there was something trying to go on behind the eye... (I can't remember exactly what she said.. I swear I'm going to start recording all these conversations) but I was under the impression that the nerves must be trying to do something.  Good news.  I hope.  I'm just scared.  My neuro seems to be confident that the 6 month mark will show some great improvement.  I can only hope but if there is one thing I've learned, not even the doctor's can predict how each individual is going to heal.  They left a very tiny tiny tiny remnant of tumor behind.. so small it doesn't even show on MRI, to preserve the facial nerve ... but obviously, the facial nerve is very very weak due to the intrusion.    I'm just putting my story out there to you, those of you who understand.... cause I think I'll be needing some support!!!  I've attached a picture of myself that I took with my 14 y/o before our outing today.....  Ugh!  Thank you in advance for your support!

[Greece Lover]

I'm so sorry you are dealing with this. I had the same thing. It started about two weeks out from the surgery. No eye closing. Couldn't smile. Chewing was very hard. I got a steroid from my doctor and that has caused most of it to resolve with time. It's still not all the way back, but my doc said it would all come back eventually. It's very hard to feel like I don't look normal! I know how you feel.

How is everything else?  Balance, etc? Hang in there! Have you watched the Mark Ruffalo video?  That might give you a positive story about the face coming back.

[ANGuy]

I would get opinions for Drs. who specialize in the paralysis your are facing.  The Drs. that did your surgery are in a conflict of interest situation as far as I am concerned.  I don't know if you need to wait 6 months or not, but I do know if I was you I'd be talking to someone else who does grafts to get their opinion.  Find out how much someone can expect to recover from an HB 6 by "waiting it out".  Find out what a graft would involve and how much improvement would be typical and how soon a graft should be performed.

Your daughter is a doll!  I can see how proud of you she is in the pic.

[caryawilson]

Facial paralysis.. brutal.  I had my nerve removed so I know your feeling.  I'll try to give some of my lessons learned.

Eye
If your "ophthalmologist" has verified you have a healthy cornea then this is great news.  However, this is NOT normally the case with those of us with Facial Paralysis.  The main concern is protecting your cornea.  Our conditions are unique to most doctors. Few tips:
* Eye weights are simple and can easily be removed.  I would seriously consider one until your facial nerve recovers.  In my experience, the nuerosurgeons are NOT the best to advise on the eye.   
* Plug the tear ducts - simple procedure (30 seconds) and can be performed by your ophthalmologist.  This allows the artificial tears to remain longer in your eyes.
* Use artificial tears during the days and lube at night.  I use Systane ultra, preservative free (in the small vials), hourly during the day.

Insurance should easily pay for these eye procedures.

Facial Paralysis
You should start seeing a facial plastic surgeon that specializes in facial reanimation.  I used Dr. Boahene at Hopkins in MD.  I sincerely hope your face recovers.   However, based on conversations with my Doctors, if you are NOT noticing significant improvement within six months you may need to pursue a surgical approach.  The main concern is that as the muscles start to atrophy, the surgery then involves a muscle and nerve graft, which is more complex.  Start finding the plastic surgeons so you know your options.  My reanimation has gone really well.

Now.. Clearly facial paralysis.  In the beginning your face feels heavy and it made me feel uglier.  After a couple months you no longer feel as if you have five pounds strapped to the bad side of your face.  Life will get better.  It will feel better, drool less, drink better, etc.  Clearly, it's NOT easy, but it's a great sign you are leaving the house.  I know how hard it is to face the world, but keep getting out.  It will get better but may take some time. 

[Cheryl R]

I am sorry for anyone who has to go through the paralysis.    Mine was due to my facial neuroma and a nerve graft done at the same time from a nerve by the ear.   This was in 2006.     You are right that this is way early and even to be not still in the early stage of how you feel with fatigue.      Feeling stronger does get better.         From other posts it sounds like there will be varying stories of what to do over time.         I have heard that give yourself a year to 18 mos before see if may need surgery.     The facial muscles are not like muscles in the rest of the body in how they are atrophy.           I was told with my nerve graft that it would be 8 mos plus before see movement.    The facial nerve is a very slow healer.     Trying to do too much too soon causes the wrong muscles to start working as the nerves act on the wrong muscle.    This is synkinesis.     
People may look at you but it is usually out of just curiosity wondering what the cause is as many know of Bells palsy but not other reasons to cause it.    I was still working as a RN in a hospital at the time and was in the public eye.      I did not do the gold weight either and did ok with my constant eye care.       I still do gel at night and only occ day use of Refresh liqugel.          You may or may not have complete recovery over time.    I was expected not to as the nerve
 graft is a bit different in it outcome and rarely has movement of the eyebrow come back.       My smile is not right but my closed mouth smile is ok.             I wish you well and hang in there.       It is frustrating.
                                            Cheryl R

[Cheryl R]

I meant to add the website which you may have already seen.      www.bellspalsy.ws            This gives good info from Jacki Diels who is such a wonderful facial therapist in Madison WI.        She does not like to see patients until a year or so and starting to have some movement.        She spoke at the AN symposium which are not longer held.
        Many of us have wished for the magic wand that make us normal again and understand what you are going thru.
                                               Cheryl R

[Cheryl R]

OK the website does not show up.      I will send it to you via pm but will be a bit as am leaving for a bit.
                                  Cheryl R

[ccooper]

Sorry to hear you're going through this but glad to hear you are getting out! Sitting inside all day won't help

I had my surgery in February, I too didn't expect facial paralysis at all, but surprise! Also, no movement at all. BUT at four weeks, I started to get itching around my mouth and then a few days later a little movement. I'm at five months now, I have decent mouth movement, a little in my forehead, but no blinking. I have said over and over, the surgery is nothing compared to the frustration in dealing with my eye. Lube, glasses, dryness, repeat. I did go to an eye Dr in the first week and got a sclera sense. Best money spent by far. Just provides long term protection. I haven't had to wear it the past few weeks because its been nice and humid.

Frustrating beyond belief, but you know it, time. I was told at six months, if I had nothing, we'd have to consider alternative methods. So I was beyond happy to see something at four weeks.

We're they monitoring your face during surgery to make sure it maintained movement? At least when I finished mine, they knew the nerve was intact, I guess just disturbed enough to shut off.

Keep getting out. Movement, laughing, conversation, it's all good. I only had two people ask if I'd just come from the dentist! They felt pretty bad when I said "nope, brain surgery."

[InnerGrace]

Hey all...thanks for your replies!    Micah, the only balance issues I experience are mainly due to the fact that I'm only wearing one contact, therefore, depth perception is an issue right now.  So other than the wonky feeling I get from time to time, I've got the SSD..( which was expected)..and the facial paralysis..I'm tired a lot, of course..but take B-12, Vitamin C and drink my Super Greens every night.  As disgusting as it is.  Lol....Thank you, AN..all 4 of my girls are dolls!!  And love me unconditionally.  They are my safe zone!!  I've been researching a lot of avenues so when it's time to make that move, I'll be prepared.  I actually spoke to a woman via the phone this morning that I met on another AN site who is four years out and had the paralysis.  We spoke for an hour and a half and she is going to help me do some research and help me along on my journey...<3.  How selfless!  They were monitoring my face during surgery ..it was left intact and it was firing..just very weak.  I got nothing but time....and hoping for some sort of something!  Zaps!  Twitches!  Aches!  Bring it!  Oh and yes..last Tuesday my opthamologist said..."I don't know what you're doing but keep doing it!  You're cornea looks great"...

[Rhcdad]

I am 8 months out and have had facial paralysis since my surgery, it has really improved over the last couple months, I have been gently massaging the per ANA guidelines. There is great member information on the site, webinar's etc.., it seems that most people think no facial excersise for the first 6 months. I seem to be developing some Synkinesis and am going to see a PT about this, we will see what happens with this. Stay strong, you are so blessed in so many ways, I truely believe that you will become a better person having gone thru this, I know I have, although it is extremely tough at times. I say use the website and don't freak out, I believe patience is a virtue in regard to this.