quote from my Doc

[msswartz]

Hello,

I am new here, just joined the ANA today.   I am now 8 weeks post op and I am dealing with it just the best I can.  I just returned to work and am glad to be back to work and feel a little bit more normal.

I wrote my Doc today and this was his response.

"It will take 6 months from surgery to see any improvement in your face. There is nothing that will improve the final outcome."

His response may be accurate but it feels so cold and factual.  I just hate it.  I am a person who needs to do something, be proactive, and all that.... the prospect of just "sit down, shut up and wait" just makes me crazy.

Anyway, that is what I'm being told.  Anyone have any comments or a different opinion?

Michael

[moe]

Hi Michael,
Welcome to the forum!
Your doctor is actually right but he had a poor choice of words.
If the facial nerve was stretched (or even cut and then reattached) it IS recommended NOT to do anything for at least 6 months.
The nerves need time to settle down and start healing by themselves.
Doing exercises/massage/nerve stimulation will only aggravate any healing down the road, resulting in synkenesis.

 (Facial synkinesis is the involuntary movement of facial muscles that accompanies purposeful movement of some other set of muscles.)-  I copy and pasted that!

It is VERY hard to sit and do nothing.

As far as the statement about  "nothing that will improve the final outcome," that is not necessarily true. After 6 months you can start doing exercises  or therapy or whatever depending on how things are going.

Wondering what kind of nerve damage you had. A cut vs. a stretched or splayed nerve.

There is also a surgical procedure, the 12/7 transposition which can help to "jump start" the nerve back up, especially if it is still intact. I have heard that this is actually okay to do within months of surgery.)

More people will chime in I'm sure.

Unfortunately, patience is the order of the day for us. Hang in there- I can totally empathize!
Maureen

[Jeanlea]

Michael,

Welcome to the group.  At my six month appointment with my doctor he told me that my face wouldn't get better.  I had no movement at all after surgery, and at six months I had very little movement.  Couldn't smile at all then.  Suffice it to say that I was devastated when I left the doctor's office that day.  My thinking, which was totally unscientific, was different.  Since my facial nerve had not been cut, just really battered, I figured that it would come back eventually.  It's been 4 years now and I can smile again.  Most people wouldn't even notice it right away.  It's still not perfect, but I think it looks okay.  Still need to improve my blink.  That's in my ten year plan.  LOL 
What I've learned is that doctors don't really know, since each of us are so completely unique.

Best of luck to you,
Jean

[leapyrtwins]

Hi Michael and welcome to the Forum.

Glad to see you became an ANA member 

Congratulations on returning to work; it's a great post op milestone.

I did not have facial issues long-term after my surgery, but there are many people who have seen improvements one year or more post op.  And as Moe mentioned, there are surgical procedures available - 7/12 jump & T3 - if you find over time that you need them.

My good friends Lori (Lori67) and Kay (Kaybo) had the 7/12 & the T3 respectively and both had wonderful outcomes.

8 weeks post op isn't very long; hang in there and give it some time.

Best,

Jan

[msswartz]

Thank you all for the warm welcomes and positive thoughts and encouragement.

Waiting and doing nothing just seems wrong but I'll worry about taking care of my right eye for now and keep soap out of it, keep my ears clean, try not to bite my face or crash when I drive.   That'll keep me busy.

Thanks again,
Michael

[epc1970]

Michael
I didn't have much more to offer but just wanted to say that I am happy that you joined the ANA and this forum. You are not alone in what you are going thru and things will improve over time. I know it so hard to be patient and hope that things will improve but that it what your body needs right now. Keep us posted on how you are doing!
Erin

[Jim Scott]

Michael ~

I just saw your post and wanted to extend yet another welcome to you.    I'm sorry to learn of your struggle with facial issues but I have to concur with your doctor and the previous posters that stated six months is the timeframe for simply leaving the facial nerves alone to heal before trying to 'do something'.  If there is anything an acoustic neuroma teaches, it's patience.

Jim

[Debbi]

Hi Michael-

Just wanted to say "hi" and reiterate that whole irritating patience thing.  I had no movement in the right side of my face initially.  Now, it has returned to about 80%, but it takes time. 

I think that the issue of when or if to start some sort of facial therapy is very individual.  I went to see a speech therapist at about 6 weeks - they also gave me some passive exercises for my face, but mostly worked on getting my p,b,n m back.  Ii got a good amount of facial movement back at about 9 months, and went to a facial therapist at about 10 months when I had enough movement back to actually do most of the exercises. 

I do have some synkinesis, which is pretty common for those of us who take longer to heal.  It seems like the faster your facial nerve gets it's "mojo" back, the less problems you'll have with inappropriate muscle movements.

I know what it feels like to want to be able to do something, but the very best thing you can do right now is just be patient.  You may want to visit the bells palsy website - lots of very good information there.  http://www.bellspalsy.ws/ 

Hang in there - it DOES get better!

Debbi

[epc1970]

Micheal
The Bell's Palsy website that Debbi mentioned is an essential-it is packed with a ton of good info!
Erin

[msswartz]

Hi Everyone,

Thank you for all the good info.

I must admit that when the doc told me that this "could" happen to me I weighed the risk percentages and figured it was a safe bet since nothing bad ever happens to me.  I'd probably be one of the lucky ones since I'm usually ok.  I thought.. what could go wrong?  After all, it's only brain surgery!  But luck was not in my corner this time and now my life and my perspective have been altered.

I do appreciate all the good words and wish you all the best who are dealing with this too.

Michael

[Nickittynic]

Sorry to hear your doctor's choice of words was so blunt and upsetting. I had a similar experience with my doctor on other issues I was having and it's made it so I don't want to go back to see him again. 
I, too, didn't worry much about facial issues pre-op. It wasn't so much that I thought it wouldn't happen to me (facial paralysis), actually since my face was already showing some weakness I was pretty sure I would have some facial issues after surgery.. but I thought "eh, I can deal with a face that's a little droopy", not realizing it's so much more than that. The unblinking eye, having to remember eye drops and straws everywhere you go, trying not to chew your lip up as you eat, little children looking at you and then hiding with their mothers (okay, maybe that's only happened to me ), not being able to imitate your kids when they make funny expressions, not being able to whistle, etc - it all gets tiring and depressing. So I know where you're coming from. I know it's supposed to be "what's on the inside that counts" and all, but you never realize how much your facial expressions and appearance really affect how others understand you and how you feel about yourself, until something ruins it all!

I'm 4 months postop today and finally feeling okay about it. I don't have any movement yet, but resting tone is improving. Looking in the mirror is less shocking for me, but I hate looking at pictures of myself so I try not to let anyone take them. Hang in there! Here's hoping it gets better for both us of, and soon!

[Darren]

Hey Micheal-
I too did not worry about facial problems pre op. I thought it would never happen to me. Looking back, my tumor was large 3.3 cm and I was having facial twitching because of the tumor so I should of expected some type of weakness.  I woke up shocked but something they cant judge is HOPE.  From day one I have been very hopeful for a full recovery- I started eating HOT and SPICY foods which I read activates the facial nerve(not scientific) I'm just shy of the 8 month mark since my surgery and I have decent control of my AN side and can smile so vaguely- closed mouth and open!- But its a smile none the less!! I expect a full recovery and my Drs. concur I should by 12-18 months.  I have not used a single eye drop for over four months!! How big was your tumor? Length of surgery? stickyness of the tumor? cut stretched etc? From my own research these are MAJOR factors that determine your overal outcome.  My tumor was large but it only took my Drs. 6 1/2 hrs to remove it- They said it wasnt sticky etc.  

Darren

[msswartz]

Hi,

Interesting questions... I don't know.  I never asked him anything afterward and he didn't tell me anything except "don't worry, you'll recover".  So I think I'll send another message and ask him a few pointed questions and see what he says.

Michael

[msswartz]

Hi,

My Doc did not remember the surgery or my tumor very clearly so he sent me the report he wrote at the time.

But you can read the report and see the MRI at the following links

http://www.itsupportnet.com/surgery/tumorpic.gif
http://www.itsupportnet.com/surgery/surgery_report.txt

Any insight or comments are welcome.

Michael

[Debbi]

Hi Michael-
Thanks for posting the links.  Always interesting to see someone else's tumor picture and surgical report.  The report reads like a pretty straight-forward procedure and good news is that the 7th cranial nerve (facial) tested well throughout the procedure.  I suppose that the nerve was stretched a bit during surgery (as was the case with mine) and now the big question is "how long to recovery?"  Unfortunately , not a question that anyone can answer with any degree of certainty.  It seems that facial nerves kind of have little minds of their own.  Mine had a snit and has refused to come back entirely, but yours may be far more cooperative. 

I'll keep fingers crossed for you.  Keep us posted, okay?

Debbi