9 months have gone by since CyberKnife at Stanford, and things appear to be holding steady.
Tinnitus is still around, but currently seems to be less. It went through a period in which it became more insistent, but now, to my relief, it has died down a bit. I’d say the tinnitus is, relatively speaking, the most bothersome of my symptoms. It also happens to be what brought me to the ENT in the first place!
There’s still some facial tingling - it’s mostly just in the right corner of my mouth, a little on my right tongue and occasionally at my temple/hairline adjacent to my R ear. Sometimes it’s not even there. I love when it is not there.
There is intermittent ear fullness. Sometimes I'm aware of it, sometimes I'm not. Either I am used to it, or it's actually improving. No way to know for sure!
The hearing loss seems to be the same from when I was last tested. That’s been not amazing, but I work from home, and so do not have to deal with the challenges of a noisy workplace that many face. Mostly it’s just irritating. When I do run into issues, I tell whomever I am interacting with that my right ear is not great at doing its job, and that if I look clueless or don’t respond, chances are I did not catch what was said. When I go out, I try to position myself in the best spot, and if the ambient noise makes it hard to understand, I chat with those nearest to me. I’ve not yet got a hearing aid - but I plan to!
Thus far, I am truly fortunate to have not had any real balance or vertigo problems to speak of - I still ride horses 4-5x a week, go to the gym, do yoga to stretch at night. For Christmas, I got a Bosu ball. I get on that when my Apple Watch informs me that it is time to stand up, or on the phone - ha!
While this advice is not applicable for everyone - so many with AN’s are struck with awful balance issues - my two PT friends (one of which works with those with vestibular issues) told me it’s best to “lean in” when challenged. So, for example, if you feel a bit dizzy when you turn, do it again (carefully! With help if needed!). Basically make yourself do the uncomfortable - within safety and reason, of course. I’ve not needed vestibular therapy, but I think it would be huge for anyone with dizziness or balance issues. When I shattered my finger (twice in 6 months!) and then had 3 (!) surgeries, I went to PT. I could have found the exercises online, but being with a professional made me feel safer and in a program tailored to my specific issue. I had such PTSD about hurting my hand I was too scared to do anything with it, and it was quite reassuring to have someone guide me through exercises. I am very glad for those sessions, and that my insurance covered them.
The thing I have noticed about my symptoms overall is that they are capricious - receding so much and for such a long period that I take it as a sign things are going swimmingly. Then they come back to visit and I get a bit down, wondering if maybe the stupid thing is waking up. This despite evidence to the contrary - I’ve read growth and symptoms are not really linked. That worry is fleeting, though - the further out I get from CK, the more able I am to move on and keep living the dream (ha!).
That emotional aspect - the toll this whole process has taken - is perhaps the most difficult. I am not the same person I was before diagnosis - I (along with all of you) have been through, and are going through, something. Kind of like any traumatic event (job loss, divorce, what have you), it has left its mark. But also in positive ways - understanding and frame of reference when people around me find themselves dealing with a scary diagnosis enables me to be even more empathetic. I’ve always been a happy person, but I appreciate every single moment in my life more. The AN has also given me an injection of motivation. I find myself even more focused and fierce about achieving goals - I’ve been reminded that life is short. That I have been the lucky recipient of a non-deathly diagnosis, and that the outcome of its treatment thus far has been barely life-altering (so grateful for that, too). I do honor and mourn that I’ve got an AN. That it’s made me have weird face feelings and is taking my right hearing (here’s to hoping some sticks around for the duration), as well as something of an emotional burden in terms of the CK"s efficacy. All of that is not amazing, but man... am I grateful that last February 15 I wasn’t diagnosed with something so much worse. I am grateful to be able to look toward the future and know it unfurls before me with a story as yet unwritten.
My next MRI and hearing tests are scheduled for the end of April - I am looking forward to seeing what-all is happening in that noggin of mine. I am hoping and praying for continued positive results.
Once again, I seem to have written a novel. So, if you’ve made it this far, I apologize and thank you! I’ll update again in 2 months, and then of course after my 1 year MRI. Fingers crossed
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Wishing health and positive outcomes to all!
Jessica
