My surgery was on New Year's Eve morning 12/09. I've been on an emotional roller coaster ever since. I knew very little about what to expect after the operation, and me being an optimistic person has made this ordeal all the worse. I've hoped and prayed for the ideal recovery, but I keep getting bad news.
After an ENT appointment yesterday, I've been very fragile. The doctor said that he did not like the BAHA device, and that most people do not like the transfer devices. He said that since I've had no movement on the right side of my face that I could end up looking like a concentration camp victim from the atrophying (sp?) muscles. After telling him that I was interested in the neurofacial retraining therapy, he said not to waste my time. Other than the weighted eyelid, the only procedure he encouraged me to have done was the permanent reanimation surgery.
I stay confused on which direction to take - heck, I'm not even sure about what kind of facial exercises I'm supposed to be doing on my own! At the end of speech therapy, the therapist gave me directions that seem to counter everything I read. She said to chew gum - then I read that I shouldn't. She said to use either extreme in temperatures on my face: ice in a towel or microwaved sock w/rice. Since then, though, I've read that only warmth should be applied. The therapist also sent me home with a tens unit for electro stimulation - of course, then I read where that can do more harm than good!
I have an appointment with my neurotologist in September to administer the ENG so that I will know if the nerve is still alive. It has to be alive if I can feel things on my face, and my tongue and teeth feel electrified many times, right? I also get the spidery nerve itchy feeling on my face at times.
My confidence level has been so down. This is not a good place to be when I will be meeting my elementary students and parents in just a few weeks. I am hoping that by interacting in this forum I will get good ideas and encouragement. God bless everyone on here who has or has to have this brain surgery! There are very few people who have the capability to understand what we go through!
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