Update

I have written a book about my experience and am now sharing information on the following website.  Please visit!

http://smilingagainbook.com/

Yes, it has been One Year

Greetings! I have made it past a year since surgery (November 3), and thought I'd give a project update. The project went way askew from my original estimate of being back to "normal" and to work in 3 months. Go figure that after years of managing successful projects that I would blow the timeline on a silly brain tumor. However, despite numerous re-calibrations, improvement has continued steadily at a very slow slope.


On November 14 of last year, I was barely moving, and had the following "issues"

Right facial weakness - This has greatly improved in the past year. I can now smile, which is huge. I started facial retraining therapy last month, and my face is noticeably improved. I still have some "weakness/paralysis" that may continue to improve for the next few months.

Right arm weakness - This improved over the first few months of the recovery year. I can now write. There are times that my hand doesn't write very well, but I have never been known for neat handwriting. It is legible at least and I can write out my own checks again.

Right hearing gone - no change since the auditory nerve was removed in surgery. I still have pretty bad tinnitus (ringing in the ear). I am adjusting to single sided deafness, but find it quite frustrating at times. Certain settings are less than ideal because background noise and music dominate.

Headaches - this wasn't listed under my inventory of a year ago, because I was still in the window of "normal" recovery headaches. After three months, it became evident that the headaches were not going away. This is my biggest problem remaining. I have headaches daily, and they are disabling. I try to enjoy life between headaches and am still trying to find relief. The cure appears to be time, which I don't have an estimate on.

Bottom line from a year ago is that the tumor is gone, I am alive, and grateful. I continue to appreciate all thoughts and prayers!!

Almost One Year

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!

For anyone who finds this in an AN search

For anyone who finds this as a newly diagnosed Acoustic Neuroma patient, please go way back to October, 2008 to read about my journey. The links are way down on the right.

Feel free to contact me with any questions. I'd be happy to talk to you.

Sally

Email: Sallygoostrey at att.net

The End. . . for now

I can't believe it has been a month since I've updated this blog! I have decided that it is time to wrap it up. My updates are few and far between and becoming redundant. For anyone still reading, Thanks. I have gotten amazing feedback.


I am still here, but stuck in a bit of a groundhog day scenario. I still have headaches, and will be going back to Mayo in August for my next checkup. The headache neurologist there is working with me, but it takes forever to get up to full dose on a medication that may not work. So I'm hanging in here, but still hanging :)

Thanks to everyone!!

Sally

The Infamous Meadow

The meadow at Al Sabo is now green with spring growth.

Not much new here. I'm almost to full strength on my headache medication. Yes, I have been working up since February, 10 mg a week with a break in the middle. I guess when you are dealing with the brain you need to be conservative for some reason - go figure. I look forward to my patience being rewarded when the medication kicks in sometime in the next month or two. Relief from the headaches that are still a part of my daily life is overdue in my humble opinion! As my wise mother used to say, "Enough is enough, and I've had enough".

I am loving life though, considering the alternative. I am taking each day at a time. I am getting out for a walk most days. Some days are good, and some we just won't talk about. I think I have finally figured out how to slow down. While it is true that I didn't exactly get a vote in the matter, I am learning to appreciate slowness. I don't think I have ever in my life done anything slowly. I didn't realize it was an option, but I am finding that there is something to be said for it.

I wasn't able to make it over to visit Kendra in France, but we talk regularly. She is currently living in a bookstore in Paris for a week or so (by Notre Dame). She sleeps between the Art and History sections of books. She has to be up by 10, when the store opens. In exchange, she volunteers for a couple hours a day, stocking books and talking to customers. How's that for an adventurous and CHEAP life? She is loving it. She will come home May 28. I wonder if I should put a couple of bookshelves in her room to make her feel like she's back in Paris?

Spring has Sprung in Michigan

Back to beautiful Al Sabo Preserve once again. It is such a shame that I have to walk daily for physical therapy (grin). Getting stronger every day. I am slower now, but maybe I'll smell the roses now. . . instead of speeding past them.