Christmas 2004 - The Facial Freeze

This photo is from a year ago when we celebrated Christmas at my brother and his wife's apartment outside of Portland, Oregon. On December 14, 2004 (exactly 6 months post treatment) my face became paralyzed on one side. This is actually a really good picture and the reason it looks as if I am barely smiling.

I have to admit I was pretty horrified and pretty depressed last year. Just when I was expecting to get better I became struck with facial paralysis, I was having vision problems, and my balance was beginning to become a challenge. On top of that I was feeling sick and getting headaches. The whole ride down to Oregon I could not sleep and it felt like my head was in a blender every bump we hit on the freeway.

At first we thought that I had what is known as "facial palsy" and that it could possibly be remedied with steroids. Because it was the holidays I went 7 days without meds and started the steroids AGAIN the monday we left.

When I saw a neurosurgeon in January 2005 he corrected us that what I experienced was actually facial paralysis which is common for people with brain tumors. The paralysis is either caused by damage to the facial nerve from the tumor, surgery, or radiation. Because I did not have surgery the damage was from the tumor swelling or radiation. At that point we could not tell which or if the damage was permanent.

With "facial palsy" the facial and muscular weakness is caused by either a bacterial or viral infection. That is why there is a high incidence of response to steroid treatment over time.

In my case the steroids only seemed to help my balance a little. Thus I had to wait it out patiently for the facial nerve to regenerate (which there is no guarantee) and hopefully for the tumor to stop swelling, die, and possibly shrink relieving some pressure.

Well after 11 months it stopped swelling and on my past two scans the tumor has shown cell death. Now we are just waiting and hoping the dang thing will shrink a little (and hopefully give me back some balance).

My smile is not a 100% now but it has greatly improved allowing me to drink out of a normal glass without using a straw (after a year of only drinking through straws).

I have some indentations in my face now from: a) my face shrinking from not taking steroids since April, b) my body also shrank quite a bit and c) lack of use of certain muscles that had been paralyzed for a year.

It has taken me a long time to allow myself to be photographed or to show pictures of myself. I do have some extreme photos that I took the evening of onset but they are not on my computer. I will post them (probably in a yahoo photo album) once they have been uploaded from Harley's computer. To see another photo which better illustrates what the facial weakness appear like, please click the link in the title of my post which will bring you to the website and photo of our ASL meetup group.