Wow-- 5 years went by fast and slow. It's been a long time since I updated last!
This last MRI showed that my AN was stable and had even gotten smaller!
In April 2018, when I had CK at Stanford, my AN measured 2.5 x 2.5 x 2.6.
As of September 2023, it measures 19.9 x 23.3 x 23.6
So now I don't get a scan for three years! I can hardly believe it.
Previous to my appointment, I was 100% convinced it had grown. While I didn't experience any new symptoms, such as dizziness or imbalance, my facial feelings had become more intense and regular. My right under-eye had started twitching sporadically (maybe once every few weeks). I was sure I felt a weird ear sensation.
But I was dead wrong. I cannot stress enough how positive I was that Dr. Chang would give me bad news. I told my husband I felt it in my bones!! Wrong, girl.
So, if anyone out there is in the same spot -- take heart. Experiencing an uptick in existing symptoms does not necessarily mean your AN has grown.
Below are all the measurements from treatment to my most recent. I'm sharing because I know that information was so helpful to me when I was deciding what to do or experiencing weird feelings and having anxiety about my dang AN.
2/2018 (diagnosis) 2.5 x 2.2 x 1.8
4/2018 (at treatment): 2.3 x 2.5 x 2.5
10/2018: 2.5 x 2.6
4/26/2019: 23 x 25
10/2019: 2.5 x 2.7
4/30/2020: 2.5 x 27
10/8/20: 2.3 x 2.7
3/18/22: 2.2 x 24
9/2022: 19.9 x 23.6
As you can see, there was a period in which one of the measurements -- the medial-- seemed to get a little bigger. Nonetheless, Dr. Chang and Dr. Hancock believed my AN was stable, but it was something they were watching. So that was fun to deal with. I did a lot of meditating and trying not to think about it! Also, you'll see there's definitely a spread in the measurements -- that was, of course, during the worst of COVID, and I got my MRIs at home instead of in Palo Alto. Sometimes (I'm told) the head placement and machine make it hard to compare apples to apples - I think that may be part of the thought process behind the margin of error as far as regrowth goes.
I had a hearing test in October, and it's remained the same as it was for my last two tests. At first, I had a steep decline, but now it seems to have leveled off. My hearing aid is a help, and I feel very fortunate to have hearing in my AN ear. Certainly, that could change, but I will enjoy it while I can!
I am still riding horses 4-5 times a week, lifting weights, and doing everything I like to do. I feel really good and very grateful to have a positive outcome.
So if whoever is reading this is me five years ago, bleary-eyed at 3 a.m., obsessively mining this forum and the FB page, it will be okay. Or at least your worries will be different from this exact moment. You'll be on the other side of whatever dragon you're facing now. It might be a new dragon, or it might be rainbows and unicorns. But at least you won't be where you are right now.
That was something I'd tell myself all the time. I'd say to myself, 'In six months, this period of time will be behind you. You might not be where you want to be, but you won't be here, freaking out about what to do." My little mantra changed with the situation, but it helped me to think that whatever anxiety I was experiencing would soon pass. Maybe it will be replaced by another thing to worry about, but at least it wouldn't be the same dang thing.
This is much longer than I intended, but there you have it.
I wanted to share my positive story and maybe make someone out there feel more at ease. I'll check back in three years at my net MRI!
Until then, good fortune and health to everyone!