Author Topic: set back - worsening of left facial droop  (Read 4543 times)

majNY

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set back - worsening of left facial droop
« on: June 22, 2012, 07:24:37 am »
Hi everyone,
I am new to forums and, I guess let me start my introducing myself.  I recently had a fossacrainiotomy on 6/7/12 to remove a left 2.1cm AN. The doctor said that my tumor was a bit "stickier than usual"  meaning that it was unusually adherent to my facial nerve and it was a bit challenging to get it off the nerve.  As a result, I had significant facial droop post-op, which seemed to be improving with the steroids. After a minor CSF leak, 2 days post op and no fever, they sent me home post-op day5 on a decadron taper.  Then two days ago (about 12 days post-op) I noticed that my facial droop was worse and not better.  They slowed down the taper as a result.  No real improvements yet tho, and my left eye is not closing as well either.  Needless to say I am slightly alarmed.

I guess my question for you guys is, what have you experienced of this?  Is this just part of the healing process...Its so hard to not be discouraged.

Thank you for your time.
Jeanette
2.1cm left AN - fossacrainiotomy 6/7/12
left facial weakness, left partial hearingloss, balance issues (starting PT 6/22/12)


Jill Marie

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Re: set back - worsening of left facial droop
« Reply #1 on: June 22, 2012, 10:32:49 pm »
Hi Jeanette,

Welcome to our forum!  My surgery was 20 years ago so things have changed a lot since then, but one thing hasn't changed.  It takes time to heal, what you are feeling today isn't what you will be feeling next week.  There are going to be lots of changes both physically and emotionally.  I know it's hard to be patient but things will change and most likely for the better.  Each of us heals differently.  The things the doctor told me I could do after surgery I couldn't do, the things he said I could do I couldn't do. 

The best thing you can do for yourself is to get lots of rest so your body can heal.  Give yourself time to adjust to what you have gone through.   There is a ton of great info. on this site so read up when you can.  There are lots of great people here ready to help you so I'm sure you will be hearing from them soon.  Please post any questions or concerns you have.  Jill :)
« Last Edit: June 22, 2012, 11:00:13 pm by Jill Marie »
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

nancyann

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Re: set back - worsening of left facial droop
« Reply #2 on: June 26, 2012, 04:31:20 pm »
Hi there Jeanette: WOW - you are a fresh post-op. I know what you are going through & know that this is such a difficult time.  I had total paralysis (still do) b/c my facial nerve was cut. As Jill Marie said, it does take some people who had facial weakness post op to regain their function, some don't regain it 100% but come very close.
Contact your surgeons re: this issue, but I have heard it happen to others & then their face starts healing again.
Now, it's really important for you to protect your cornea. I use Refresh PM lubricant exclusively (even after 6 years b/c of the permanent paralysis). I suggest you use this frequently (do you have feeling in your eye - does it burn from being dry?). Most people can use drops, but if your eye isn't closing, I suggest lubricant - things will look blurry, but you will adjust, & it will probably be a temporary thing.
I also use a moisture bubble when I sleep to protect my cornea. The one I use is called NITEYE Bubble Bandage, nonsterile. I buy them by the case, but you can by them by the box - 14 to a box. A box may cost around $25.00.(A case of 24 boxes costs me $459.62 incl tax, S&H). The tel.# is: 1-866-906-8080. The product # is 90305. Sold by Beaver Visitec. They are pricey, but worth it for me. I got tired of taping saran wrap around my eye - which is also an option for you. You're trying to make a moisture chamber for your eye.
So my friend, keep a peaceful heart through this most difficult time (boy, does it bring back memories...). Always good thoughts, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

LADavid

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Re: set back - worsening of left facial droop
« Reply #3 on: June 26, 2012, 08:56:57 pm »
Hi Jeanette
There's not much I can add to what Nancyann said.  But I do have a caution.  I had a sticky tumor as well with significant droop and a painful eye.  About three months post-surgery, I started getting tingling in my face and some movement.  Unfortunately, I started using exaggerated face exercises and within a month, I had developed synkinesis.  I don't know if that was the cause but I sort of suspect that it didn't help things.  I believe normal movement is the best therapy.  Best wishes for recovering nerves.  David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

nancyann

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Re: set back - worsening of left facial droop
« Reply #4 on: June 30, 2012, 12:50:33 pm »
And you are looking great David! Congratulations on your book. Can't wait to purchase it - & if I get to LA, I expect an autograph! Always good thoughts, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

majNY

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Re: set back - worsening of left facial droop
« Reply #5 on: July 10, 2012, 08:46:19 am »
Hi,

Thank you Jill, Nancyann & David for your replies and advice.  Its been a few weeks since I posted and it is so true what you said Jill, what I'm feeling and experiencing is changing daily.  I saw my doctor today, and he seemed pleased with where I am at in my healing process. My facial droop has not worsened and if I concentrate, I can get my smile to be somewhat even.  What has been the most difficult is being patient with myself, and like you said Jill allowing myself to heal.  I got my staples out last thursday, and started vestibular therapy.  I finally finished the decadron taper.  I was surprised at how much weight I gained and how tight my skin feels from having been on it for the past four weeks...

Thank you again for your advice and well wishes.  Best of luck to all of you as well.
Take care,
Jeanette