Greetings to anyone who still checks in here occasionally! I know that newly diagnosed acoustic neuroma patients are occasionally finding this site, so I feel compelled to give an update!
I am still having headaches, and have been told that it will be a long ride. After AN surgery, a small percentage of patients have long term headaches. It seems to be due to damage to the dura, or the lining of the brain. Over time it is supposed to improve, but the time varies per individual. Headaches are still keeping me from working.
What I have learned through this journey is that each person has their own unique set of life changing effects. Some are a bump in the road, and some make you feel like you were the bump run over repeatedly by a bus. However, it does get better! There is wonderful company and camaraderie on the ANA website - http://www.anausa.org/forum/ So if you are new to this, be sure to visit the forum for lots of answers.
My face has improved immensely over the past few months. I had complete right facial paralysis for 6 months. Over the summer, my smile returned and looks pretty good - if I may say so myself. This month I spent three days in Madison, Wisconsin for facial retraining with Jackie Diels (University of Wisconsin). It was amazing. I only have one thing to say about it:
NEUROMUSCULAR RETRAINING IS A MUST!!!
Well, that is one thing to say - I will add more detail in my simple, non medical terms. What I learned is that my facial muscles had over-strengthened as they returned. So I had a face full of charlie horses! I learned how to stretch and release those muscles. That was painful, but has already improved and is now more relaxing. Second, I learned how to do little motions to retrain my brain and improve the synkineses that I have (inappropriate muscle movements). It was absolutely eye opening.
I am happy to be alive and just hanging out, letting my brain heal at its desired pace! I can't believe that November 3 will be one year!
3 comments:
Sally.
You are so pretty! Your puppy companions are just adorable. Pets are the absolute best! So sorry that you have to endure the headaches, but with time I hope they will go away. I think you have the (Right Stuff)to be patient:) God Bless and love,
Aunt Charlotte
Glad to hear that you are doing so well! :)
Hi Sally,
It's great that you are much better, and you are as beautiful as ever. I had no clue that such a thing as AN existed. Of course I had never heard of Bell's Palsy either - until I got it. Many of the same symptoms, one-sided facial paralysis, headaches, terrible tinnitus (while simultaneously experiencing extreme sensitivity in the affected ear). But it is such a blessing that you are healing so well.
Anita
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