BELL'S PALSEY

[golden]

[size=1pt][/s

I am almost at the 2 year mark (22 months) I woke up Thursday and noticed the left side of my face (3.7 cm tumor side) felt

swollen and it seemed harder to talk (L facial paralysis post surgery)  seemed to get some what better by evening time On Friday the

 same thing. I thought just a fluck thing, High and Low pressure systems play havoc on me anyways and can decide how I will feel

 that day. Well today is Saturday and I spent 5 hours in the Emergency Room. YEHA!!!! I got up and my 7 yr. old had a cub scout

banguet @ 11a.m. that he really wanted to attend. So as a single parent I  couldn't let him down we went(even made a pasta salad

 to take). Long story short I called my ENT who in turn told me to go to E.R. tell them he sent me and Wanted a MRI. Long story

 short (I have no patients for a E.R. Dr. who has no concept of a or compassion for a AN patient) Long story short the

 E.R. Dr. came in and told me my MRI looked good (I will have my surgeon who I see , through a drawn up face, So is the Left side

 of my face Bell's Palsey ( my mom said that is probaly whats wrong. I should pay her what they are going to charge me) He looked

 at me and said yes that is what it looks like. He was going to call my ENT Dr. to subscribe me medicine ( I am wondering what I just

 got charged for)??  My ENT did all the work over the phone for free LOL!!!. My face was so much better since surgery it was almost

 symatrical, looking some what normal again. And WHAM Ms. obviouse, WHAT IS WRONG WITH YOU!! I know it is a woman thing

 what we look like. Has anyone else experienced Bell's Palsy post surgery???  I am sorry to vent but, right now I am frustrated,

angry, sad, thankful it isn't worse news(Like the tumor is coming back), guilty for feeling all these feelings. .
Golden

[Jeanlea]

Golden,

If I read your post correctly you had AN surgery nearly 2 years had some facial palsey that was getting better and now you have Bell's Palsey??  No wonder you are mad, frustrated, and angry.  I would be too.  The thought that I could get Bell's Palsey on top of my current facial paralysis would be too much.  On the positive side, regular Bell's Palsey seems to go away much better than the surgery induced kind.  Let us know how this progresses.

I'm glad that you can come and vent here.

Jean

[cindyj]

Hey, Golden, so sorry about your new troubles.  Yes, emergency room episodes can be a nightmare.  I am only 3 months post-op and only experienced some temporary facial weakness, but I did have Bell's Palsey 19 years ago.  Like Jean said, if that's what it is, it will improve over time (most of mine improved over just a couple of months).  I still have a very slight reminder of it, but no one but me and the neurosurgeon that did my AN surgery can tell.  It is certainly very frustrating for a few weeks, but will, hopefully, not last too long...if it is indeed Bell's Palsey.

By the way, kudos to you for taking your son to the Cub Scout banquet - those are tough under the best of circumstances   I went to many, many Blue and Golds with my two boys.

Keep us posted,

Cindy

[hruss]

Welcome to our group,Golden !!

Like you I also woke up with a facial paresis the morning after my last surgery  (I had several of them - look at my signature). Several days later I started with facial exercises and  am keeping up with them. All the people around me see the progress, but since I watch myself in the mirror several times a day - I don't. I have a friend who has had a Bell's palsy so I am aware that is nasty I am sorry for you though because you recovered from that weakness of your face and now have others. It is just not fair!! Anyway, what I would reccommend you to do is probably what you have already know - keep up with the exercises and don't lose faith!! Take a great care of your eye - you won't it shut like mine was, right?!

keep us posted!
all the best
hrissy

[Jim Scott]

Golden:

I'm so sorry to learn you've experienced the sudden onset of Bell's Palsy.  I didn't have this issue to deal with but from the little I understand about the condition, it usually manifests itself without much warning - as it did with you - and the exact cause is often elusive.  The good news is that Bell's Palsy is almost always temporary (as little as a few weeks) and can be treated with medicine (probably a steroid) as you were told.  However, I'm sure all that is of small comfort to you right now.  The progress you'd made in regaining facial symmetry seems lost and of course, you're upset and frustrated.  Who wouldn't be?  That impromptu trip to the ER with it's insensitive doctor(s) didn't help, much, either.  Treating it with medicine (steroids) is beneficial and hastens recovery in most cases.  As distressing as the onset of this condition is, it is very likely not a permanent condition.
 
Jim

[4cm in Pacific Northwest]

Golden,

Post on set, so much later after AN surgery, of Bell's Palsy again is weird.    I would bypass the ENT and send the MRI to a neurotologist to look at in more detail or even a neurologist.

ER people ARE generalists so do not be surprised about their clueless-ness... Many of us can tell you how many clueless general medical practioners there are out    ... Education not just to the public but also to the medical community is the role of the ANA. As you know 1st hand there is still much work to be done. Try to channel your frustrations, which I can totally relate to, and help the ANA as they also try to better educate the medical community through their mission… I chose to go that route rather than get so angry at the past doctors I dealt with - who so missed the boat and barked up the wrong trees.

Something has aggravated your cranial nerve VII

Here is a link that explains the facial nerve   
http://en.wikipedia.org/wiki/Facial_nerve

Bells Palsy does not just happen- there has to be a source or a cause…

Yup a prescription may take down some inflammation but you need to find out what is “the cause�…

This link explain causes of Bells Palsy
http://www.bellspalsy.ws/cause.htm

This may or may not actually be Acoustic Neuroma related - but you still need to get this checked out and maybe even your blood worked checked - for infection.

If I was in your shoes and my facial paralysis started to increase I would want to find out the root cause. Do you really want to accept “unexplained returned Bells Palsy� as an answer?

Make an appointment and insist on seeing a specialist.

DHM

[golden]

I want to thank everyone for your posts. It is a blessing that I was told about this sight. Who better to ask than individuals that can relate to me on a level others can't.
My Otolaryngologist/Neurtology Dr. House ( He is in Indianapolis IN.) who was one of my surgeons, actually sent me a reminder card that it was time for a yearly M.R.I. and hearing test and recheck. I am calling him first thing Monday and letting him now what is going on. The E.R. doctor called my E.N.T. who prescribed me prednisone and a anti-viral medication. I am supposed to go to Indiana University Medical Center on Thursday (which has been scheduled for 2 weeks now) to have neur/pyschological testing done in the neurology department.
 I am going to channel my frustration and let all my doctors know about this website and they needto check it out and give all AN patients this web address pre treatment and the ones they have now that are post treatment. It is funny, I always thought that all doctors were very intellegent all knowing beings. Boy have I got that all wrong lol. I was debating on attending the symposium in Chicago in August but, now I know I am going. It's sad to me that thier are so many individuals like me  not knowing what to do or where to go. I am going to do my best to let other AN patients know that they are not alone and about the ANA association and it's website and all the wonderful people willing to give advice or sympathize with you about what they are going through.
Thanks again I am feeling better already
Golden

[sgerrard]

Thanks again I am feeling better already

That's what we like to hear.

I know next to nothing about Bell's Palsy, but fortunately some here do and have responded. I think your decision to channel your frustration and turn into something good is an excellent one. It is too bad that AN patients have to work so hard to look out for themselves, rather than having "all knowing beings" for doctors, but at least there are some resources if you are willing to put in the effort.

I look forward to meeting you in Chicago.

Steve

[golden]

I went to see my E.N.T. Monday. He thinks it maybe Hyme or Hime ( not sure how it is spelled or pronounced) but, it has do with the facial nerve ( 6 inches bruised during surgery) healing that is miss firing and causing the branches (Left AN side) of the facial nerve to spasm. He made an appt. for me to see my surgeon on March 10 and I am continuing the medication my E.N.T. prescribed.
It is hard to believe that being 23 months post that I would develope something new but, then again I never thought that I would develope a brain tumor.   I am taking one day at a time and refuse to let this get me down.   I always tell myself that it could be worse. My tumor was in a postion and a large such a large size that I could of died if I didn't have the surgery.  So I have to count my lucky stars that I am here and able to care for my 2 young children and myself. 
I will keep everyone posted to what I find out March 10.
Again thanks for the posts it makes me feel better that people understand my situation and relate to me. 

[4cm in Pacific Northwest]

it has do with the facial nerve ( 6 inches bruised during surgery) healing that is miss firing and causing the branches (Left AN side) of the facial nerve to spasm. He made an appt. for me to see my surgeon on March 10 and I am continuing the medication my E.N.T. prescribed.

What you have described here is “synkinesis� (cross wiring) and “hypertonic� muscles (spasms).

This explains synkinesis
http://www.bellspalsy.ws/residual.htm


This explains what hypertonic means
http://en.wiktionary.org/wiki/hypertonic


I had one of the world’s finest neurotologists do my AN surgery.
Nevertheless know that when synkinesis and hypertonic muscles set in - he was not the expert to see and I really had to be very insistent to get a referral, from his staff, to see a neuromuscular facial retraining therapist.


This article explains the sort of therapy I receive for my face
http://www.ophth.wisc.edu/publications/fs_summer_04.pdf

When you see your neurotologist insist on getting a referral to see a “neuromuscular facial retraining therapist�

This is a highly specialized field and there are only a few. I reside in Oregon and the one I have been working with is based out of San Diego CA (Wanda Crook).

Here is a list of specialists
http://www.bellspalsy.ws/centers.htm

Because you are having an increase in Bell Palsy again - botox probably would not be your answer nevertheless a facial specialist will be able to do a more accurate assessment… and test to see which facial nerve branches are firing and which ones have cross wired (synkinesis) 

It is crucial to find out why your facial nerve has weakened again. The follow-up for the AN tumor is very important incase there has been some tumor re-growth that “could� be impacting your facial nerve (which is very close and parallel to the acoustic nerve)

The sooner you get the follow-up MRI and in to see a neurotologist- the better.

I am trying to figure this one out
Re quoting you
“neur/pyschological testing done�The bell palsy is not “brain function� related as much as it is “nerve function� related. It is due to the cranial nerve on the outside of the brain … why on earth “psychological� testing? That one has me stumped.

Keep moving forward and keep us posted.

DHM

[golden]

 DHM,
I already had the psychological testing appointment set up before I had this come about. I asked My E.N.T. if I should go a head and do the test. I have cognitive problems ( 42 at time of sugery, I had a real good memory until the tumor was removed) and wanted to get some testing done before my insurance runs out.
Thank you so much for the info. I had a M.R.I @ the hospital and the E.R. Dr. (had NO confidence in) stated that the Dr. that read the M.R.I. said it looked good ( and I have even more confidence in him , NOT. I will feel better when I get to see my Surgeon March 10th.  It is hard to believe that I would develope a new condition being almost 2 years out.
Thank you very much for the info. Do you know if it is possible for the nerves that aren't firing to fire up again? Will it go away? How long have you had this same problem? 
I get more answers to my questions from the AN patients here than I do my own Dr.'s. I should be paying you people for the advice I am getting. I will keep you posted. Thank you very much DHM I greatly appreciate the insight and will probaly be in touch with more Q and A. I live in Indiana about an hour from Indianapolis.

Golden

[leapyrtwins]

I get more answers to my questions from the AN patients here than I do my own Dr.'s. I should be paying you people for the advice I am getting.

Golden -

I'm glad the members of the forum have been able to help you, but I just wanted to say that the vast majority of forumites are not doctors.

So while we can offer you advice and share our personal experiences, we should never take the place of a trained medical professional.

Please take DHM's excellent advice and see a neurotologist as soon as you can.

I look forward to meeting you in August at the symposium.

Jan 

[4cm in Pacific Northwest]

I'm glad the members of the forum have been able to help you, but I just wanted to say that the vast majority of forumites are not doctors.

So while we can offer you advice and share our personal experiences, we should never take the place of a trained medical professional.

Ditto!
DHM

[golden]

Sorry I was being sarcastic about the doctors. I am seeing my Surgeon on March 10. I totally trust my E.N.T. he has had experiences with AN's before (diagnosised me before I even had the M.R.I.). I am in good hands. I was just extermly dissappointed in the care I received when I went to the E.R. The Dr. just stood there and all he said was "M.R.I. looks good" and I had to ask him "Is this Bell's Palsy" and he very blankly said " Looks Like it" and walked away. I thought I would at least get some explanation of what Bell's Palsy was. I found out when they handed me a paper explaning Bell's Palsy. Believe me I know my body well enough to know when to go to the doctor.
Golden