Author Topic: Is facial paralysis the "New Normal"?  (Read 3730 times)

Heresrose

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Is facial paralysis the "New Normal"?
« on: December 02, 2011, 02:04:57 pm »
Is this what everyone has meant by "new normal"?
3.2 x 2.1 x 1.5 partially removed via Translab on 11/28/11 w/Friedman & Schwartz of HEI, SSD, facial nerve intact but have facial paralysis and synkenisis.
3/4/14 MRI shows 3mm AN growth.
AN now is 1.7cm
4/11/14 CK Stanford with Drs. Chang and Gibbs

CHD63

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Re: Is facial paralysis the "New Normal"?
« Reply #1 on: December 02, 2011, 02:57:45 pm »
Rose .....

You need to talk with Dr. Stefan and/or Dr. Friedman about the facial issues you are experiencing and tell them your fears.  From what you said initially it is my understanding Dr. Schwartz saved your facial nerve.  If so, the weakness you are experiencing today must be considered to be temporary.

And no, this is not to be considered the new normal.  It is far too early in the recovery to know what will be the new normal for you.  There is still brain swelling on your facial nerve right now and it was probably jostled pretty good during surgery so it is way too early to give up.  Worst case scenario is facial reanimation that can be done.  Do not give in to thinking this is permanent!

Many, many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Heresrose

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Re: Is facial paralysis the "New Normal"?
« Reply #2 on: December 02, 2011, 03:18:15 pm »
None of the doctors want to commit to any one response.
3.2 x 2.1 x 1.5 partially removed via Translab on 11/28/11 w/Friedman & Schwartz of HEI, SSD, facial nerve intact but have facial paralysis and synkenisis.
3/4/14 MRI shows 3mm AN growth.
AN now is 1.7cm
4/11/14 CK Stanford with Drs. Chang and Gibbs

Cheryl R

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Re: Is facial paralysis the "New Normal"?
« Reply #3 on: December 02, 2011, 04:54:12 pm »
Rose, it is very hard immediately past surgery to not think that this is how it is going to be forever.      In most cases the new normal means the lost of the hearing on one side.    Being tired for longer than what one thinks they should be.  Some time to get the balance back to only bothering you when real tired or in the dark.       Many many ANers with surgery do not have facial paralysis at all.    The ones with more problems are on here more often and longer than ones who do well and then leave as they are recovering well and back to their normal lives.     One does adjust to what is going on with them better than you can think right now.     Most facial paralysis is temporary if the nerve was not severed or very badly damaged.     But the nerve's temporary is longer than what we think temporary should be,    So it can be  few weeks to several months.     I have been thru it twice and it is frustrating.      There are not ways to push the nerve to heal faster.    It is a slow heal.    The facial muscles are of a different fiber than regular muscles and takes a long time for damage to occur.     One learns to be patient and that is not easy.      Asking your surgeon how much damage was done to the nerve can tell you some but not exactly how fast the healing will be.            Doing the eye care is very very important and your dr may want you to have a gold weight put in to help close the eye.               Your job is to rest all you can now and be up walking some too.           We are here for you and hope for the best for you.                          Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

alabamajane

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Re: Is facial paralysis the "New Normal"?
« Reply #4 on: December 06, 2011, 10:22:19 am »
Morning Rose and I hope you are feeling much better today..
I am about 6 weeks out of surgery so I am still in very early recovery also,, but do feel much better each day.. as the meds used in the hospital get out of your body and swelling goes down you too will feel much better also.. patience is a big thing to develop at this point,, I know I am working hard on it! I do have facial paralysis due to severing the nerve as tumor was imbedded in it.. not what I had hoped for going in,, but reality.. I had the second surgery 5 days after first one to graft nerve so that healing is beginning also,,
I feel anyone "on the other side " of surgery in reality is experiencing their "new normal".. regardless of outcome,, good or not so good,, as you will not be the same as you were before surgery.. at the very least, you NO longer have a brain tumor and hopefully some of the symptoms you were experiencing.. most of us have new symptoms and new "issues" to deal with. . but you can not feel that the way you feel right now is how you are going to be even one year from now.. that is one message one of my Drs gave me on discharge,, things will get better even with my paralysis,, it just takes TIME .. as I say I feel better each day.. and I had a VERY hard time accepting what happened to me at first,, but realize also that you are in a bit of shock right now at least I was as I had so much happen to me in the span of a week,, my life had changed in so many ways,, but I still HAVE life, no tumor, no cancer,,and basically 6 weeks down the road,, I look pretty much like I did,, just maybe like I have had a very minor stroke on that side.. SO,, hang in there,, realize things will be hard and different for awhile and stay positive as that will help you heal as much as anything. I hope you have found some rest in the few days since you have posted,, that will help you the most.. Good luck and let us know how you are doing.. Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Jim Scott

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Re: Is facial paralysis the "New Normal"?
« Reply #5 on: December 06, 2011, 03:50:52 pm »
Is this what everyone has meant by "new normal"?

No, Rose, it is not.  Retired nurse Cheryl, Clarice, and Jane (from Alabama) offered valid and substantive perspectives on post-op facial paralysis and it's temporary nature.  They are worth re-reading for you or anyone that assumes their current condition is their 'new normal'.  It is not.  Will some things be different?  Of course.  I enjoyed a very successful de-bulking surgery and subsequent (planned) radiation with a rapid recovery but even now, 5 years later, I have one or two very slight reminders of my AN such as a tiny 'numb' spot on the side of my tongue and an occasional 'dry eye' that rapid blinking relieves.  I also have less stamina than I had prior to the surgery but it doesn't really affect me except that when I push myself, I sleep very soundly that night.  So, these few impediments are part of my 'new normal' and like most AN post-op patients, I acknowledged and absorbed them then worked around them and got on with my life.  You will, too.  Of course, the fact that facial paralysis is not necessarily permanent should be an encouragement to you along with the realization that in life, nothing remains static.  We grow and we learn.  Along the way we gain some understanding and, one hopes, once through the 'AN experience' we're better for the journey.  That may seem overly-optimistic, even naive to you at this early point in your recovery - but I believe it is accurate and I encourage you to persevere because it will be worth it.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

JAndrews

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Re: Is facial paralysis the "New Normal"?
« Reply #6 on: December 06, 2011, 07:36:46 pm »
I had facial paralysis set in about 2 1/2 weeks post-op. It stayed about 2 weeks and then was completely gone. Just like Dr. Brackmann and Dr. Schwartz said. Your recovery will take time. Please do not expect your brain to be back to normal so quickly. Take care of yourself, be kind to yourself mentally and physically. I called and emailed House (DR. Brackmann) after my surgery with anything I thought was out of the norm...which was  everything that was supposed to be happening during my recovery.
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

opp2

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Re: Is facial paralysis the "New Normal"?
« Reply #7 on: December 06, 2011, 07:41:42 pm »
None of the doctors want to commit to any one response.

It's likely because they can't. As different as we all were pre op, we are also different post op. Big cyber hugs for you, and best wishes. Lean on us...yell, laugh, cry...we are here.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

leapyrtwins

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Re: Is facial paralysis the "New Normal"?
« Reply #8 on: December 09, 2011, 12:04:47 pm »
The "new normal" refers to anything that isn't the same as it once was.

Examples, balance issues, hearing loss, etc.

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways