Am I wasting my time?

[CROOKEDSMILE]

Okay from the person who does the facial exercises religiously...that would be me. I don't know...
#1...I don't agree with the experts that the bells phenomonon can be fixed with exercise. That is a defense mechanism that we are born with to protect the cornea. That is like trying to fix the "startle reflex" (I was a neonatal nurse for 13 years) in a newborn. That is when they are startled their arms fly up in the air and the arms shake. You can't make it stop or go away. It is INNATE....BORN that way. So I truly believe that exercise to get rid of the bell's deal a bunch of crock... to put it nicely.  Sorry to all the therapist out there......I'm sure that I'm probably wrong.
#2...I had botox in my chin and neck 5 weeks ago for the synkinesis. Okay so the dimple in my chin is gone but now I can't make the nice movements that I did before with my chin and it now bunches up over to the good side. Not a good tradeoff. The shot in my neck has helped but the exercise that I was given to strengthen my smile was to slowly try to move the corner of my mouth while moving nothing else. How is this going to strengthen my cheek muscle. This would take IONS to strengthen anything. None of these exercises mimic the ones that I read about that everyone else does. I know everyone is unique and needs are different but come on. I was also told by my eye surgeon and my therapist....give it two months and you'll be blinking.....Still wearing the external weight. Again I know that people can't predict things like that and I REALLY wish they wouldn't say that because now I'm disappointed 5 months later. I have also been setting myself up for disappointment as I tell myself I WILL NOT ORDER ANYMORE ADHESIVES for my external lid weight. Well......Order for more went in on Friday. UGH!
I guess what I'm trying to say with this long, crazy email and it is something that I need to keep telling myself is.......Do what you're told by your therapist whether you think it makes sense or not AND take it one day at a time and don't put pressure on yourself during facial nerve recovery by putting a deadline on milestones i.e. blinking. Just needed to vent.

[jazzfunkanne]

Hi i have been doing exercises reilgiously for 20 months, i have just began to see a  big difference in my face from 18 months, the facial nerve can take a very long time to recovery they say it can take up to 18 month - 3.5 years, there is a good site called http://www.bellspalsy.ws/exercise.htm

[CROOKEDSMILE]

thanks for the website. The only thing is....my therapist has me doing eye closing exercises and corner of the mouth exercises and that is it. I do heat and massage on my own.  When I ask her about the other exercises she says to stick to the 2 that she's given me.?!?!?!.

[jazzfunkanne]

I got alot of help and tips off Todd (facial trainer) on the bells palsy site, the best ones to do are the ones where you use your fingers to help the muscles to move , i have a few pictures of some  i can sent you if you want

[CROOKEDSMILE]

that would be great. I'm really getting frustrated and am thinking about canceling my Oct. appointment as I have to drive 6 hours there. I just don't feel like I'm getting adequate therapy although the botox does help with my neck (platysma). I even asked her about doing the exercises in which I assist by using my fingers and she told me not to. That the only way the muscle can strengthen is by active not passive motions but it seems to me that it would help keep things loose and easier to move by doing what you're describing. I'm willing to try because I am at a standstill right now. I am 15 months post op and my smile isn't too great...very small. The therapist said that I am 37/100 and very weak muscles.....so I think that more aggressive exercises would help. I am getting some movement in my forehead but she just wants me doing the corner of my mouth and my eye?!?!? Did you get your blink back? Is your smile pretty symmetrical? I'm willing to come up with my own plan of action..........it can't hurt.
angie

[jazzfunkanne]

I have a gold weight in my eye so my eye closes, and my smile is getting there, another tip is too do the exercises lying down as that way the muscles dont get so tired (so the physio told me) I will sent you the photos tomorrow

[Kaybo]

Angie~
I would talk to LA David - I THINK that if you do stuff to aggressively then it causes synekisis (sp?).  I know he is going to therapy & I know he would share whatever with you!  Let's try to get a phone call in this week...let me know!

K

[CROOKEDSMILE]

Hey!
Thanks for ya'lls response. OOPS! The southern "Ya'll" is coming out in me. Kay would love to talk to you. I will be gone on Monday as I have started my volunteer work delivering meals to the elderly ( I love old people) It is called Meals on Wheels and they were going to have to close down the program due to gas prices that the company didn't have allocated funds for so they have asked for volunteers who are willing to use their gas/cars to get these people fed! Thank you Jazzfunkanne for all of your help. I don't want to overdo it but I also don't want to sit idly by!
Have a great day. Gotta run...Kids are climbing on the ceiling.
Angie

[4cm in Pacific Northwest]

Angie

Quoting you
"Again I know that people can't predict things like that and I REALLY wish they wouldn't say that because now I'm disappointed 5 months later"

Not that I was counting or anything   but my first movement did not happen until month 5 and 3 days… this is going to take time. Each person is different in their recovery time and physicians just give a “ball parkâ€? figure- often base on how the facial nerve responded to their probe.

Quoting you
The shot in my neck has helped but the exercise that I was given to strengthen my smile was to slowly try to move the corner of my mouth while moving nothing else. How is this going to strengthen my cheek muscle.

My guess is your neck muscles were overactive and tugging in such a way that they were disabling proper movement of the cheek. Once I received botox, in the neck, my cheek started to function more and my smile turned upward (before it was being pulled downward by the overactive neck muscles)… and then the eye weight I able to actually put aside. Now the botox is wearing off and I too had to order more adhesive strips as my eye weight has to be used again. The botox is not a cure but it does provide us with a window of time to reduce the activity level of the overactive muscles and to allow the weaker ones to catch up- and paralyzed ones perhaps a chance to actually fire those motor neurons.

If you look at these illustrations (links below) of the facial muscles you can see how they are interconnected
http://www.yorku.ca/earmstro/journey/images/facial.gif

&
http://www.dkimages.com/discover/previews/1545/11723493.JPG

Here is another good image to study of the neck

http://www.medicalarts.com.au/media/gallery/107.jpg
&
http://www.medicalhistology.us/twiki/pub/Main/ChapterThreeSlides/HeadFaceNeckMuscles.gif

Remember that neurological issues take longer to heal than let’s say -muscle issues. This is going to take time and patience on your part. Try to learn as much as you can about the physiology of the areas you are having challenges with. Once you become more knowledgeable you will not feel so powerless.

Empower yourself with knowledge and be sure to ask your therapist questions.

Keep moving forward…

DHM

[CROOKEDSMILE]

Hi 4cm in Pacific Northwest,
Thanks for your response.
Clarification...I am 15 months post op.....the 5 month disappointment was from the time that I had the eyelid weight taken out 5 months ago and I was told that I would be able to blink by now.
Your email was helpful.
Angie

[jazzfunkanne]

How far does your eye close, when i seen my consultant last week he said my eye still has a slight gap when i close gently so he wants to leave it for ANOTHER YEAR , how far does your eye close and what exercises are you doing for it, why did they take the weight out if it doesnt close?

[4cm in Pacific Northwest]

Clarification...I am 15 months post op.....

Angie,

I am at 13 months post op- so we are pretty close in timeline.

I have found the eye closure exercises on this UK bells palsy website very helpful

Try these
http://bellspalsy.org.uk/exercises1.pdf

Here is their homepage
http://bellspalsy.org.uk/

I was noticing they have an on-line forum. I just might check it out this week…

During the time when the botox was at its most effectiveness I was actually able to wink without the cheek pulling up. We did not botox my cheek- just the neck and chin… so it is interesting that the neck was affecting the cheek… which was also affecting the eye muscles.

Keep heating (for 20 minutes beforehand) and stretching the platisma and also try the eye closure exercises and see if you notice a difference.


Keep us posted.


DHM

[lori67]

Sorry I'm getting in on this late (as usual!!), but you're absolutely right about the Bell's reflex.  It's hard wired in there and you can do all the exercises you want, it's not going to go away.  In fact, you wouldn't want it to go away, because that's the only thing your body can do to try to protect your cornea.

My facial PT (who trained under Jackie Diehls) and is considered the best in the area also had me doing exercises for this.  I talked to my eye surgeon about it because I had my doubts, and he confirmed that it wasn't going to hurt anything, but it certainly wasn't going to make the reflex go away.

So, from that point on, I will certainly listen to the suggested exercises, but I try to trust my own instincts as a nurse and a PT.

Lori

[CROOKEDSMILE]

Hi Jazzfunkanne,
When I close gently the eye almost closes except for a small bit where you can still see the white of my eye. Enough opened to dry it out if I'm not careful. Also, I was told that if you have a gold/platinum weight and if you can turn your head upside down and close your eye against gravity then the weight is ready to come out. Well...on good days I can do that?!?!?! but I'm not blinking all the way so I would wonder how effective that test is on determining when the weight should come out. I'm hoping that with time the eye will get stronger.Angie

[mimoore]

Don't give up.....I have this stuck on my fridge:
"You have within you, right now, everything you need to achieve almost any goal you can set for yourself. The onlly question is how badly you want it, and how hard are you will to work to get it. There are not limits" author unknown.
Great advice DHM, I am very impressed!
Michelle