Author Topic: Post AN Radiation Facial Paralysis  (Read 2741 times)

JeremiahL

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Post AN Radiation Facial Paralysis
« on: June 13, 2019, 08:08:11 am »
So, my wife was diagnosed with a 3.78cm AN last year and the surgery went as well as expected.  She completed acute therapy and facial therapy and then she went through the radiation process with 4 days of therapy around 3-4 months ago now.  Just about 3 weeks back, she woke up with slight partial facial paralysis.  This scared us, but we were certain this was from the swelling of the tumor (what was left).  The surgeons subscribed steroids 2 weeks ago and the symptoms began to make some progress (with some facial exercises as well).  She is no longer the steroids.

Just yesterday afternoon though, the paralysis seemed to get worse.  Her left side (tumor side) lip is tighter and she cannot completely close her left eye now.  I have a call into her surgeon, but we are just wondering what this could be from?  Her face was nearly perfect for almost 8 months, then radiation on the tumor and 3-4 months later overnight, facial paralysis?

If there is anyone that may have a similar story or advice it would be greatly appreciated.

Director

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Re: Post AN Radiation Facial Paralysis
« Reply #1 on: June 13, 2019, 09:43:47 am »
The facial nerve can take many months to heal post-surgery, and radiation can cause side-effects for quite a long period of time, so her side-effects are not completely unusual. We have a booklet (also webinars and newsletter articles) if you want a free temp membership and patient kit- reach out to info@anausa.org.
Allison
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primo_4

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Re: Post AN Radiation Facial Paralysis
« Reply #2 on: October 06, 2019, 03:37:17 pm »
Hello, my wife has the same problem.  We are from canada and we keep getting told to just wait and see what happens. Now my wife cannot see anything from the left eye and shes gone as far as getting a sclarel lense to help protect the eye from drying out.  Over the course of the last couple days things have gotten worse and she cannot see out of the eye and we are constantly leaving it patched up with makes it very hard for her to function around the house alone and cannot drive anywhere.


if there is anyone out there that has any suggestions of what to do it would be greatly appreciated

MarlaB

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Re: Post AN Radiation Facial Paralysis
« Reply #3 on: October 06, 2019, 07:28:21 pm »
Do you know of facial paralysis treating physicians near you? Where in Canada? I know there are some folks that work out of Vancouver...and I'm sure there are others in Montreal. Probably a few from the mid-country as well... Wishing you the best.

kkc

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Re: Post AN Radiation Facial Paralysis
« Reply #4 on: October 17, 2019, 09:08:12 pm »
I hope your wife is recovering as of this writing! 

In 2016 I did experience facial paralysis 4 months after I had Gamma Knife for a 2 cm x 2 cm x 1.5 cm AN.  I had an MRI at that time, and it showed that the AN was indeed enlarged.  This happened in the 4-6 month window where swelling of the AN is expected.  The theory is that the facial nerve was being pressed by the enlarged AN.  My doctor said at the time that I had a very robust response to Gamma Knife.

At first I was told that there was very little chance of facial nerve recovery, which I chose not to believe.  I started therapy with a PT who specialized in facial paralysis & I prayed a lot.  I am about 50% better.  I do have a gold weight in my eyelid because the affected eye doesn't close properly.  I am still seeing very slow progress toward regaining facial muscle tone.