ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: DSShopper on December 02, 2014, 12:12:08 am
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Hello,
I have been lurking and reading ALL the post regarding facial paralysis. I was diagnosed at the end of July '14 with a benign jugulare paraganglioma. I had a 12 hr surgery to remove the tumor on Oct. 8, after a 4 hr. Emobilization on Oct. 7.
Pitot to surgery I went all over having consultations with different surgeons including Mayo/House/Barrow and Stanford. I decided to go with. Dr Jackler and. Dr. Dodds at Stanford as they were confident they could remove tumor and preserve my hearing. They did both; however was shocked when I ended up with full right sided facial paralysis. Dr. J said nerve is fully intact and tested well, and was shocked it failed. (Woke up in recovery with no movement).
I know this is an AN site, however as rare as AN's are jugulare para's are even more rare and there is no website such as this one.
Any rate, I know PATIENCE is the key, I am really very positive, just get down every once in a while and occasionally just get a good cry out and go on. I am thankful I am alive, as During the diagnostics for the tumor, they also found a adenoma on my parathyroid as well as an aneurysm behind my left eye. I have since had the adenoma surgically removed 12/2 and will be having the aneurysm repaird at a later date. With all this going on, I feel I am handling it pretty good mentally and emotionally. Right now I am sitting here with a four inch incision across my throat, while still healing from the 6 inch question mark on the right side if me head....quite the jigsaw puzzle I am.
I am wondering what. I can do to get through the holidays with a crooked smile. I want to be normal, eat drink and be Merry, but if I laugh it hurts....my right side feels like it is being stretched. Is this normal? My family is wonderful, and we don't ignore my issue, but it is hard cuz when we are conversing and something is funny, I laugh...then everyone starts laughing cuz I look so funny. Then I end up laughing...and it hurts. I hope I am articulating this clearly, I don't want it to sound like they are making fun of me...they aren't, but it is funny to see me. Should I not laugh...is this going to cause synkenisis? From over pulling right side for the left to laugh/big smile?
This is the hardest thing I have ever had to endure. I had read all the possible "issues" with my surgery, and thought "I got it." But had NO idea how physically and emotionally I would be impacted. The no blinking, my eye is either dry or tearing non stop, etc.
Thanks for all your insight.
I forgot to add I have a "Minnie Mouse" voice from my last surgery, so I am patiently waiting for my facial nerve to wake up and my vocal cords! I am a hot mess! Lol!
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Hi DSShopper. I too am here due to facial paralysis from a different condition. Like you I woke with facial paralysis although my nerve tested well during surgery. After 6.5 years I have a decent, but not symmetrical smile. My eye closes but does not completely blink. I have an eyelid weight and wear a scleral contact lens.
There is a good article at http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm that I think may be of help to you, particularly the section about predicting facial nerve recovery.
Back in the early days after my surgery, I quickly learned how to suppress a smile, but found it nearly impossible not to laugh. As far as synkenesis goes, my facial nerve doctor told me that it usually develops from trying to force movement rather than normal reactions. I don't think you need to worry about laughter, besides it is good for the soul.
Anyway, as much as you can, try to keep the focus out of your head and on family, friends and the reason for the season, whatever that is according to your beliefs.
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Thank you, I have read your blog and find it very positive and amusing. You are a talented writer!