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03/14/2012 05:11 AM

understanding bells(page 3)

Alya
AlyaPosts: 301
Member

there are so many "theories" I, too, have heard about the shingles herpes simplex...I did get, ironically, last year, a vaccine against shingles...that won't have anything to do with the BP..of course. You are so recent to BP, I am , as I tell you all the time, really hopeful that it will depart amicably ...

You are doing the right thing with taping the eye shut...I , too, hated it...for me, it went on 7 months...and even though the eye does not close hermetically, I refuse to go back to the taping.

Hot compresses on the affected side is helpful..and using thumb to stretch out the mouth on the affected side...I try to do this while taking a shower...ironically, the only 2 times I have found a small measure of "relief" 1) the hot shower running on my head and 2) the oven! The oven thing is strange...when it is very hot and I put in or take out something I am cooking...the strength & constancy of the heat provides temporary relief.

I changed my diet for months...it didn't help & I missed coffee.

How is your speech? I was a language teacher, that ended pretty quickly. My mouth is still twisted and generally my speech is about 85% to where it was...but there are still some consonants that are hard for me...

AND when people who do not know me, look at the mouth when I speak & see that it is twisted, they assume the speech will also be "twisted"...very frustrating for me. S.Shocked

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03/31/2012 09:31 PM
LauraWcookie
Posts: 5
New Member

Another member of the Bell's club here. I have had mine for 28 years and still have residule side effects. Has anyone had the nerve decompression surgery? Well here is my story.

Going through a divorce, herpes (thank you ex husband), moving,car accident where I hit the windshield and 37 weeks pregnant. We can all agree stress is a big factor. Woke up with a bit of tightness to my left jaw. Went to work and the eye and nostril on the left starting pouring clear liquid as the stiffness progressed in my jaw. Called my doctor and he referred me to a ear, nose and throat specilist. Started the steriods that day and went into labor that night. By next morning left side of face totally flaccid. And I had a baby boy. Nurses in labor and delivery said that they see alot of bell's palsy with pregrant women. Once home I started seeing the ENT, neurologist, chiropractor. ENT stated that my case for bad and suggested that I have a nerve decompression surgery. The nerve that controls the face goes throught a small hole in the side of your skull. He said that the hole should be opened wider to take pressure off the swollen nerve. I jumped at the chance of fixing my face. The incision runs behind the left ear. The surgery caused ringing in my ear 24/7, some hearing loss and a weird pocket in my ear canal that gets infected on and off. I started to see a chiropractor that did special cranial adjustments, an accupunctist. My face did recover alittle and the pain went away. No one has talked much about the pain. My face felt like it was bruised and very tender. Going through the divorce and losing my looks became very depressing. I even thought I shouldn't be raising a baby looking like I did.

Well 28 years later and I still stuggle with my looks. I lost my big dimple and hate to smile my stupid, crooked smile. All the pictures of me make my eyes look uneven and freaky. I never let anyone take my picture.

Thanks for reading.

Laura


04/02/2012 10:19 PM
Alya
AlyaPosts: 301
Member

this is really a heart-tugging story and account. What trials you have had & for 28 years!

I had never heard of that surgery...the only surgical procedures I have heard of in relation to

Bell's seem to be almost experimental and risky.

I've had Bell's for 3 years and it has dramatically changed my life...it has also put at least 10

years on to me...I had been active and working (as a teacher) before...with the Bell;s much limitation has taken place.

I will never get used to it...never get "accustomed" to Bell's...but, I know that I will never get rid of it. My neurologist indicated that by about 18 months , if there has not been reinnervation, there is slim change of any change or improvement.

I tried acupuncture, and change of diet and the all the correct medications at the onset. I was not able to close my right eye for 7 months...I had to tape it shut. It closes now, but not completely, and my mouth is twisted and my speech will never return to what it was originally.

I, too, never allow any one to take pictures of me.

You had a son...even with the Bell's, of course, you were able to raise him & I assume hold on to a job.

I wish you some amount of quiet and peace. Hopefully, you have good friends who can bring you some comfort & hopefully, you son has given you purpose and a focus. S.Smile


04/05/2012 04:16 AM
LauraWcookie
Posts: 5
New Member

Thanks for the note. I do have friends that are supportive, but I always think that they are lying to me when they say they don't even notice my face. How can you not?!!! The doctors also told my that I was as good as I'm going to get after about 1 year. Do you have any overlap with your facial movememnts. By that I mean when you try to smile your eye response too? Maybe someday they will develop a nerve transplant that would work.

Hang in there.

Laura


04/05/2012 07:50 AM
Alya
AlyaPosts: 301
Member

When I talk, eat or "smile' the right eye shuts.

I saw a facial physical therapist yesterday...she does 'retraining" of the muscles...

for a skype session= $200.00 out of pocket...there is a woman who does the

same work closer to here...an evaluation costs $280.00 and then an office

visit of about half an hour costs $75.00.

Yes, there is not reinnervation after about 18months...that is it!

I, too, have friends who tell me that they don't notice anything...

how is that possible?

Certainly, when I go to stores where I am not known & if I ask a

question...I can see that the person looks at the twisted mouth &

assumes I have had a stroke and that my speech & brain will be

scrambled... If I close my eyes very very tight, I have pain in the

muscle from the jaw to the ear lobe.

The physical therapist (for retraining of the muscles) claims that by doing

the exercises, within 6 to 8 months, there "should" be marked improvement...

Financially and emotionally, that is a big "should" for me.

There are days that I am quite despondent...I will never become

friendly with the Bell's...I try not to spend too much time alone...Being alone

and with Bell's...very hard...

How does your son respond to it?

S.


04/07/2012 10:18 PM
LauraWcookie
Posts: 5
New Member

How I am now is all my son has ever known. He thinks its silly to worry about and is always trying to take my picture. A friend of mine lost her grandson to drowning last year. She tells to take as many picture with my granddaughter as I can, because you just never know.

My ENT had me us a battery operated device that sent little shocks to the muscles of my face. The thought was that when the nerves healed that the muscles would be ready and in shape. It was painful and I never saw any benifits. Others doctors have told me that you can't get any benifits from that. I wanted to try anything and everything. If I didnt try I would have always wondered if that was the magic key to "fixing" my face.

Good luck, keep me posted.


04/08/2012 05:49 AM
Alya
AlyaPosts: 301
Member

Ah, you have a granddaughter! I have an 8 year old here , granddaughter , who doesn't remember me without Bell's...and curiously, she will often tell me "how beautiful I am..." It makes me wonder how she sees me!

The "shock" treatment...I've heard of that & my neurologist told me absolutely not to do it...since there are no cures for Bell's...everyone offers suggestions...Bell's either goes away on its own...or it doesn't.

Facial physical therapy...I had tried it 2 years ago & really didn't see any improvement...now, the dermatologist (out of pocket) told me to restart it...it is costly...the consult about $250.oo and then each 1/2 hour treatment about $75.oo. Like you, I think I will make one more effort to try something...

Keep up spirits...I try to do the same..the eye, at times, is so bothersome, I just want to be alone...It seems when at the movies...something about the absolute darkness...afterwards. the eye really bothers me and starts to water...only when I awake in the morning is it 'easier"...S.Wassat


04/16/2012 12:31 AM
LauraWcookie
Posts: 5
New Member

Maybe I should quit complaining. I met a woman at work the other day that has bells. Her face was totally twisted to one side. The working side seemed to be pulling the weaker side over. She was up beat and did not seem to be bothered by it. Mine would be considered mild compared to hers. But again I have to live with mine and nobody else does. I am thinking about having a filler injected into the crease at the side of my mouth on the bells side. It might make them seem a little more even.

Laura


04/16/2012 05:44 AM
Alya
AlyaPosts: 301
Member

I don't know about the 'filler" what is it? I find it difficult, after 3 years, to have any optimistic feeling about Bell's...often, it becomes more than I can "reasonably" sustain. In the mornings, after a somewhat clearer and quieter night, I notice the face doesn't quite bother me so much...but when I talk with people and the pull on my mouth is decisive...I just want to be by myself.

Before you do "filler'...really investigate...tell me what is involved with it...my dermatologist has not said anything about it...

S


05/10/2012 05:39 PM
LauraWcookie
Posts: 5
New Member

The filler is a cosmetic filler. Restyline,I think is one of them. I am going to see a dematoligist for something else and his office does botox, skin peels, spider viens etc...

I will see about filling in the larger crease around my mouth and cheek and try to make the sides look even. Botox might even make my eyebrow normal. It won't look so funny is bothe eyebrows don't move instead of one.

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