question- facial paralysis vs weakness

[newmommyLA]

I don't understand how they make the distinction here.  Does paralysis mean the nerve was cut?  When is facial weakness considered temporary paralysis?  I know there is a lot of hope for my facial nerve to return and I am thankful for this.  After surgery, both of the neurosurgeons and the anesthesiologist told me my facial would be fine.  A day and a half later, my face weakened greatly (now considered a 6), but the docs came in to my hospital room and told me it will all come back.  100%.  Hopefully, they are right and I need to relax and let time heal (however slow it feels). If any of you could share your stories with me about what was promised and what actually happened, I'd really appreciate it.  I'm so confused about the distinction between paralysis and weakness.  I know some people with paralysis have improved over time, so other than the facial nerve being cut, and whether or not you can smile right after surgery, what is the difference?  My eye has been really dry and I'm hoping to get a contact lens next week when I see the eye doctor.  Funny thing, when I was in the hospital, one of the doctors said I didn't need to see the eye doc cuz I don't have paralysis, just weakness.  My head is already dizzy and this confuses me greatly.


Thanks to all of you for letting me vent only 2 weeks post-op.  I promise I'll be back soon with happy news.

Amy

[tenai98]

this is how I see it...I had no paralysis after surgery but did suffer and still do suffer from some facial weakness...and what I mean by that is that occaissonally I may drool, or drip some food/liquid out of the corner of mouth in the moment of weakness....There were times after surgery that my AN side jaw became fatigues while eating...Someome will probably have a better answer for you but I have always maintained that I had NO paralysis, just weakness
JO

[saralynn143]

Hi Amy, if you had movement in the recovery room and the weakness/paralysis came later, you have a good prognosis. In the HFS world it's called delayed facial palsy and in general, recovery is quicker and more complete.

In my case, the facial nerve was stretched but not severed, but I woke up with facial paralysis (no movement at all). My neurosurgeon said movement might come back on its own, but it might not. Fortunately I have had significant recovery over the past 17 months, but there is a long way to go yet, that is, I still have facial weakness, especially in the chin and forehead regions. It is not likely that my face will return all the way to normal, but folks here report recovery even in the 3-5 year time frame, so I am hopeful for more movement than I now have, which is symmetry at rest, a decent closed-lip smile, small regular smile, decent snarl, eye closure with eyelid implant.

Here is a web site that might be helpful to you. Pay special note to the "Predicting Facial Recovery" section. http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm

Sara

[Cheryl R]

Amy, Have you been using eye drops?       A heavier gel is better when one has a paralysis too and may take some experiementing which brand works best for you.     Plus the nighttime use of a gel.            A gold weight is used for many when the eye does not close all the way.         I did not do that but kept the eye lubed well.       
If a nerve was cut,you would have immediate paralysis with no improvement without some type of surgical help.     I had a facial neuroma with a nerve taken from by my ear and put in during the same surgery.        I knew that would take several months to improve but it did.    I don't have complete movement but some and look ok at rest.    Weakness versus paralysis causes some problems but not looking so much with the droop that paralysis has.              Nothing needs to be done for help till getting some movement back.   Some facial therapist wait for a year to see how it is all doing.       Those of us who have been thru it know how hard it is to look at yourself and be very upset.             I think those who see us in public are just more curious why we have it than trying to be cruel if someone mentions it.                  You adjust in time with the issues of eating and good mouth care.     The eye care is the most important.                      We know how hard it is to be patient for it to improve.
                                                         Cheryl R

[Jim Scott]

Amy ~

I'm sorry to learn about your facial weakness.  I didn't experience this issue but as I understand it, the facial nerves are extremely sensitive and if stretched (by the tumor or disturbed in surgery) they are very slow to return to normal, although an intact nerve usually does rebound, eventually.  I can't offer a 'medical' opinion because I have no medical training but I suspect the the terms facial 'weakness' and facial 'paralysis' are nearly interchangeable.  Considering the fact that your facial nerve is intact I assume your doctor is referring to your facial deficit as 'weakness' because if the nerve was badly damaged or cut, you would definitely be considered to have facial 'paralysis'.  I suspect it's a matter of semantics.  However, this is probably a question best asked of your doctor - as he is the one using the term 'facial weakness'. 

Jim 

[epodjn]

There is a full range of Paralysis/weakness, from a HB grade 6 which is total paralysis to a HB grade one which is total movement. I had my facial nerve cut but repaired during surgery. I woke up with total paralysis. It's been 11 months since surgery and I'm at a HB grade 4 and getting close to a 3!!!! On the other hand some people who never have the nerve cut don't recover movement at all. As we say here, your results may vary.

[nancyann]

Hello Amy:  Take a deep breath....   It sounds like your facial nerve was NOT cut,  & you will get tone/movement back.   I had my facial nerve cut & reanastamosed,  but there is no movement,  I opted for the T3 procedure,  long story.
In your case,  tone & movement is expected to return.   My only advice is that you protect your cornea until you can blink (unless you can already blink).
If not,  you need to use either lubricant or drops 24/7 untill the blink reflex comes back.  You can also get an external or internal weight to assist your upper eyelid to blink.
Hang in there,  it can take months before you see improvement (hopefully not that long).
Always good thoughts,  Nancy

[salamander]

Hi Amy,

My two cents worth, here.  When I did research before my surgery, I kept reading about "weakness".  Well, when I woke up, I found out that weakness and paralysis are essentially the same thing!  Anytime something doesn't work, it is a weakness/paralysis.  I was totally paralized on the AN side, and a grade 6.  They had lost the nerve in surgery - while testing throughout the surgery, they lost it at the end.  They told me that the nerve was intact (critical question to ask your surgeon), and that it would probably come back.  However, we would have to see how much and how soon.

I know exactly where you are.  It was incredibly scary and confusing.  I found it difficult to go out in public, and was always holding my hand in front of my face.  Fortunately, after 7 months, my smile started to come back.  I'll never forget the thrill on June 4 at 8:20 am when I saw the corner of my mouth move!!!!  At one year, I have quite a bit of movement back.  I still have what I call paralysis of parts.  Others might call it weakness.  From what I understand, the first 18 months is the most significant for the return of movement.  From this forum, we know that movement will return for several years after surgery.

Regarding a contact lens, I was not able to wear my soft contact lens for a few months.  I have very poor vision, so I was pretty freaked out.  After about 4(?) months, I was finally able to wear it again.  Initially, my lower lid was too weak to hold the lens in place.  I couldn't really see the improvement, but after time it must have strengthened enough to hold the lens.  That actually has helped keep my eye moisturized, by keeping my cornea covered.  When my lens feels dry, I douse it with drops.

I still can't wiggle my nose.  I have a dry eye.  I can't raise my eyebrows.  I also got synkinesis, so there are inappropriate movement with my face.  Example, I can't raise my eyebrow but when I smile, my eyebrow raises!  I started neuromuscular retraining last month, and I highly recommend it.  I didn't understand that my face was actually all knotted up from overactiviation (my term).  It appears that the longer you have paralysis, the higher the probability of having synkineses as the face has been trying so long to try to move that it is now overcommensating.  I learned to massage my face, which was huge for relaxing it and getting my lip back down where it belonged.  Retraining itself is very hard, but I'm up for it.  Lot's of time in front of the mirror.

I hope this helps a bit.

Samantha

[Debbi]

Hi - sorry you have joined the "facial weakness" group.  Like others have said, I am not really sure that there is a distinction between "weakness" and "paralysis" - from the perspective of the patient, when you face doesn't move, it kind of doesn't matter what the heck they call it!  My nerve was stretched in surgery and I woke up with full paralysis, HB 6.  The surgeon's best guess at that time was that I would get recovery in about 5 months; however, as with all things facial, the nerve has it's own time frame.  I am just over 18 months and am between a 2 and 3 on the HB scale.  I have a good smile, although that corner of my mouth pulls down slightly; no tearing, but pretty good blink; no movement of eyebrow/forehead.

Like Samantha, I also have some synkinesis, which is kind of expected I guess.  Mine is not very severe - my chin dimples on one side (which isn't quite as cute as it sounds) and my lower eye lid contracts when I smile, resulting in a slight squint.  Although I have not seem any real change in the last few months, I am optimistic that I will continue to see some slight improvement over the next few years.  Will I ever get back to a Grade 1 - no.  But I am happy with how I look now compared to how I looked even a year ago.  I will try to post some before/after pictures here later.  I took pictures monthly for the first year just so that I could note changes (it is hard to see the little changes when you look at your face every day). 

In short, Amy, there is much to be encouraged about.  The fact that your paralysis didn't start until a few days later is generally quite positive and I would think that you can expect good results.  It will requite patience and a fair amount of courage.  If I can help you in any way, just reach out, okay?  You're not alone here.

Debbi, winking and dimpling...

[newmommyLA]

Thank you all for sharing your stories with me.  I do feel optimistic and keep trying to remind myself that it takes time.  I have had some sensations in my face that feel funny and I hope that means something is coming to life in there.  My eye can almost close completely, but it still won't tear.  Sometimes I feel a dull pain on that side of my face.  Could that just be a slow waking of very sleepy muscles?  All the sensations are weird, but if they are bringing movement with them, I can handle weird and beyond.  I really believe that if my facial numbness goes away, my overall sense of recovery will improve dramatically.  It's difficult enough to feel balanced and "well" after this surgery and having half a face that feels lifeless makes finding your way straight so much more challenging.  My heart goes out to all of you who have suffered with any of this facial paralysis.  I'm lucky because my face is well toned and I have no sagging so you can't really tell unless I talk or smile.  But as I'm trying to recover my balance and get my body oriented again, the sensation of the paralysis actually bothers me more than the physical.  I look in the mirror and look better than I feel.  I know it's getting better and I can't wait to see a little movement around my mouth.  I'll be sure to keep posting with updates.

Big hugs and huge amounts of respect to those of you who have gone through this!  You are all so brave!

Amy

[Debbi]

Amy-

What you are experiencing and feeling is all normal.  You seem to have a good, positive attitude, which is, in my humble opinion, a big key to a good recovery.  Just keep looking forward!

Debbi

[stoneaxe]

I'm 6 months post-op and the tone is back in my face and for the most part it looks pretty much as ugly as the other side.... . If I smile and show teeth you can see the difference....a it of a grimace...but if I just raise my cheek and lip a bit they are balanced. Eating is still a experience in patience. I can close my eye but only if I close both and still not very tightly. I have over abundant tears and have developed synkinesis between the tear ducts and salivary glands...when I'm thinking of food or eating I cry..... .... .
Doc is still confident that I'll get most if not all use back eventually.

[margen]

I had complete right-side facial paralysis immediately following surgery.  My surgeons assured me that the facial nerve was not severed so I should begin to see improvement in a couple of weeks.  I thought a couple of weeks meant 2 weeks, not 8 weeks.  At 8 weeks, I could finally see the first small sign of movement.  Several months later, I still had some asymmetry, but I at least felt somewhat normal again.  Now I am two years post-op and I'm the only one who notices any asymmetry.  I'm also still seeing improvement.  The only problem I have now is that my eye tears when I'm eating unless I take very small bites and chew slowly.  That's not a bad thing since I used to have a very bad habit of wolfing down my meals.

The surgeons are right, you just need to hang in there and be patient.