Delayed Facial Paralysis or Palsy?

[Denise S]

O.K., I know everyone is differnt, but I'm wondering how long it took for people to get back their facial & eye stuff after DELAYED facial paralysis or palsy?

Also, what the heck actually causes it to become delayed?   I woke up with what they thought was fine hearing and facial stuff.  A few days later it started to go backwards.     It almost seems close to a week for the paralysis to start.   

Boy these AN things certainly are oddballs    Every single situation is so different.

Thanks,
Denise

[saralynn143]

Delayed palsy is very very common after hemifacial spasm surgery. While it is scary, it is usually fairly quick to resolve, and also generally resolves completely. I think it is usually caused by swelling, and is sometimes treated with steroids. Have you contacted your surgeon?

Sara

[Denise S]

mmm, what you are saying sounds so interesting and familiar.   My doctor is 3 1/2 hrs. away and the paralysis or whatever didn't start until one week after surgery.      I go back a week from Friday (12/4) and hope to get more info.  I've been having other spinal health pain and had been more worried about that, so I never really asked questions.

Now I need to know what hemifacial spasm means.   I ended up at my local ER because my face got so swollen feeling and it felt like I had a small snake crawling under the skin.   Crazy.    The ER dr. did call my neurotologist and worked things out and said it was muscle spasm and swelling and the paralysis.   I was put on the steroid Prednisone, and then they gave valium too because of what they called muscle spasms.   I also was having major anxiety over it all and in spinal pain.   I've logged a lot on my blog, but gee it seems like I've had a lot of stuff going on.

I am just curious with the delayed stuff if people actually get full use and feelings back.  Oh, and kind of curious how long it ranged for people.   My left side of nose is so swollen and I have a deviated septum, that I can't breathe out that side.  If I take a deep breath it puts pressure on the inner ear.   Just lovely....   I use nasal strip to help with that.

Thanks for any infol
Denise

[saralynn143]

Similar to an AN being a tumor pressing against the eighth cranial nerve, hemifacial spasm (HFS) is caused by blood vessels coming into contact with the seventh cranial (facial) nerve. It causes the facial muscles to twitch at random times, primarily around the eye and the cheek. That is what I had. Oddly enough, hearing loss is the major risk of surgery, and more AN patients experience facial paralysis than HFS patients do. Strange but true.

There's a pretty good article about HFS at wikipedia if you are interested: http://en.wikipedia.org/wiki/Hemifacial_spasm
and another good website here: http://www.umanitoba.ca/cranial_nerves/hemifacial_spasm/index.html

Since we're kissin' cousins, so to speak, I hang out here for facial paralysis support.

Oh, and yes, most people with delayed palsy get full use and feelings back. I'm sorry to hear about all the issues that are bothering you, and hope you get relief soon.

Sara

[Denise S]

Sara, I greatly appreciate you hanging out for support      That is why I'm so in love with this forum.

My issue now seems to be I keep doing research on stuff, getting good info. here.   Then I have a blog where family members and friends read.   Well, now I've got some of those people who think they know everything and say, "oh relax....you'll be fine in a week or so".    Hello, I don't think they really get it.    So, if others make comments on my blog, it might help them realize this isn't a little game.   I'm having multiple issues, yes, but I need loving support.   

Don't get me wrong, I have lots of it.  My husband is the greatest, but even last night after I had a crying episode, he say I need to stop thinking so negative,  I'm fine and he's there for me, and things will be o.k.     Just think I've sunk to the bottom of the barrel for a bit.     Getting the testing done and praying hard everyday it will start mending and be nothing more severe.

Thanks again for everything
Denise

[Micky]

Hi Denise

I was in hospital for 8 days after surgery 30/01/08. The day i got home i started to get facial issues couldn’t close my eye side of face lost its form and went south, It affected my speech ect. This lasted for me about 6 months got full recovery after around a year. Deaf in the left ear and waiting on someone to invent a no surgical solution to my hearing loss, may be waiting a while  good luck with it all.

[Denise S]

"Micky"  like your theory on the non surgical approach for hearing 

Did you have hearing right away after surgery?    I know for a fact I even heard the doctor wispering in my ear while I had my finger plugging my good ear.   But now with this crap going on, I have none and it feels like  big rock in there at times.

At least if I hear from others that it can take a long time, but still get it back, I'll be fine.   I can control my patience, knowing there is hope.

thanks

[saralynn143]

Micky, have you explored the Hearing Issues forum? Look especially for posts about TransEar and GGuaman's post titled GOOD NEWS . . . NEW INVENTION FOR SSD. It's about a new device called SoundBite. Both of these are non-surgical.

Denise, if you are sure that you were hearing after surgery, that nerve may have swollen as well. I was completely deaf on my surgery side immediately after surgery, but my hearing has recovered about 80 - 85%.

Sara

[Denise S]

Sara, I like the sounds of that    My husband even remembers the doctor whispering something in my ear and I repeated it, so that should be good.     Just not gonna hold my breathe.   I'll find out more next week Friday when I have a follow up with the neurotologist.

thanks

[Denise S]

I put some pictures on my blog today.  They show some of my delayed facial paralysis.     Not sure where I should post anthing here.

I am gonna use the blog and those pictures as my journal to see how i progress.

Hope you all had a great Thanksgiving!!!

[stoneaxe]

I was in the same boat. Surgery was mid-June..had full facial function immediately after. Lost function completely after 3-4 days. I noticed some slight improvements by late September and a big improvement by the end of October. Still some weakness and slightly unbalanced, have developed some synkinesis...cry when I eat instead of salivating...very weird. I can smile some and move my cheek and lips independently. Starting to be able to close my eye independently and can close it fully when i close both....even starting to blink normally. My nostril has opened a bit. Overall good progress...still can't whistle though...I miss that...my Mom says I whistled before I talked...

[Denise S]

Guess I need to look into "what is synkinesis???"       

I'm trying to research things out.

My husband and I are still wondering if all the pain I've had in my pelvic/butt/hind legs is more more just related to possible blood in the spinal fluid.   Been researching that some too.    Going for MRI Monday though, so will hopefully find out plenty and all will be on the right track.

[Micky]

Hi Denise
I was completely deaf after the surgery and i think i will stay that way as the tumour was quite large and they cut the nerve ect.
Sara thanks for the post i have looked at the hearing section and have seen the Soundbite looks fantastic but it is only in trial stages and im not holding my breath on when it will be available in Australia if it gets produced. I have gone for a BAHA trail in the past and i could hear allot better but not sure. I am booked in next week for another BAHA trail but still not sure, i think it may be me I’m still young and i know this sounds bad but i don’t really want something on the side of my head no one can tell that im deaf in the ear and by having the BAHA they will know.
Well im crossing my fingers the soundbite becomes available

Take care Mick

[stoneaxe]

Synkinesis is basically the wiring getting crossed. The nerves as they heal will put out threads trying to reconnect. The threads don't always get attached to the right place. All I have to do is think of food and my eye waters.