Well, here I am, just shy of 8 weeks after CK and things seem to be going along just fine (fingers crossed it stays that way!). When I first showed up at the ENT, my symptoms were tinnitus, right side ear fullness and a faint tingling on the right side that I presumed to be TMJ related. If only it were! In short order, it was discovered I had slight hearing loss in my right ear. Right after diagnosis, I had all kinds of symptoms - I attribute the spike in scary stuff to stress! I experienced increased tingling/cold feelings on the AN side, some bouts of motion sickness, ear pain, and tension head-aches. Once I'd calmed down, those did, too - although it took a few weeks!
Anyway, after my treatment at Stanford, the tingling has really subsided - it's barely there. More of a faint, not-very-noticeable cold feeling that comes and goes. Balance seems to be fine - in fact, right before diagnosis I had read that if you can't close your eyes and balance on one foot, it may be an indicator of an AN. To my consternation, I could only do a second or two on one foot with my eyes closed. Post CK, I can hold it for longer - maybe 10 seconds on each foot with my eyes closed. I am not sure this is due to the CK - I really feel stress and exhaustion play a role in exacerbating symptoms. Just like it would in any situation!
Tinnitus - it waxes and wanes, but is always pretty low level. Right after CK it was almost gone. Bliss! Lately it's back to it's quietly hissing self
As I type, I feel mostly fine. The past few days I've noticed head-crawly feelings at the AN side on my temple and above my ear, as well as the sensation of something touching my head there. It's not pressure per se - just sensation. It comes an goes, and literally messes with my head - ha! If I think about it too much, I start to tell myself all sorts of things. I worry that this is the beginning of something that will increasingly get worse and result in major discomfort and the need for medication or medical intervention of some kind. I've been so lucky so far - surely something must go awry? But then I remind myself that it could also be just the nerves healing. Or being affected by the CK. Or the AN leaking stuff that's hurting them, or just another round of weird symptoms - after all, I've had similar feelings before. I wish I didn't have to wait until October for an MRI simply because I am DYING to know what lies ahead for me. But it's ok to wait, too. I mean - I was diagnosed February 15, and as I've gotten used to the idea of an AN and sought treatment, I've gotten back to normal. Not spending hours upon hours researching. Sometimes the fact that it exists is pushed to a remote enough corner of my mind that I forget it is even there - usually when I am riding, at the gym, or out at a yummy restaurant
Hearing - hmmm. Since being tested for hearing in February, I am now aware of its deficits. I can't honestly say if it has stayed the same or gotten a little worse. Probably the latter, since that seems to be the way things go. I for sure can still hear on the AN side and can understand talking on that side as long as there is not a ton of background noise. But it's not perfect. For example, when walking beside a friend talking, I want to have my left ear closest to them. I find I miss a lot or have to try harder to listen otherwise. Also, I have an alarm on my phone that sounds like birds tweeting. Totally slept through it the other day
. Also, I sometimes have a weird distortion when certain pitches of sound reach my AN ear. Sometimes it is pronounced, sometimes not. I try not to think about it, because it bums me out
. I presume it can only indicate deterioration. But you never know!
I am sharing all this in the interest of full disclosure - I was hungry for every stinking detail when researching about my AN and treatment! However, if you're reading this and worried about never being ok again, know that truly, day to day I am good. I have not slowed down at all. I still ride several times a week, go to the gym, go out to restaurants are are noisy, work on my laptop at home, do random yoga poses when I take breaks from sitting and working ( I work from home! Don't worry - I am not doing Down Dog in the middle of an office
). When out in noisy places, I just position myself in a good spot at the table so I can hear conversation, or walk with my good ear closest to my companions. I do take CBD tincture in the evening and then Advil when I go to sleep at night if I have a weird head feeling like the one described above. In the morning I have my yucky-tasting Green Vibrance and the baby Aspirin.
Here's hoping that things stay this way all the way through!