Tag Archives: hearing aids

Happy New Year!

It’s been a few months since I’ve posted, and I’ve received a few requests for updates, so–

I’ve been taking one diuretic pill a day, and I think it’s helped to reduced pressure in my head. Perhaps I had some secondary endolymphatic hydrops going on in my repaired ear, and the pill helps me move that fluid out. I do still notice a very strong reaction to salt. Eat too much and I get a floaty head, feel pressurized, and can hear my heartbeat in my unrepaired ear. I think the diuretic helps keep that in check as well.

I had an MRI done with and without contrast to determine what my inner ear looks like on the repaired side, and if the patch is holding. So far, we can’t tell. I’m seeing Dr. Wiet again soon to get a new CT and on both sides, to check the surgery site, and also look at my other side as my unrepaired ear has been feeling a little wonky, too. At this point my only option on that side would be a round window occlusion, but everyone seems very reluctant to work on me given the chance that one mistake could leave me deaf. Round Window seems the safest route of them all, and I’d bet good money that someday I’ll be getting gowned up for that procedure.

I still have strong, constant tinnitus on the repaired side, as well as skull aches on that side and weirdly, a lot of tension and knotty soreness in my neck and lower back on that side, too. It has to be related, but no one can seem to tell me why yet. I’m going to visit a neuro soon. But for now, I travel with a bottle of Aleve, see a chiropractor twice a week, and get massages when I can. It’s a maintenence game at this point.

Fatigue and stress really exacerbate my symptoms, as do noisy, chaotic environments. But, that said, I’m finally ready to say that other than the hearing loss and skull/spine issues, and occasional brain fog/ dizziness, I am better than last year in terms of SCDS symptoms. I think a lot of that is adjustment and coping, some of it is probably the surgery.  Cognitive therapy has done a lot for my thinking, creativity and stamina, and frankly, so has just regular old therapy. Talking out the emotional aftermath of this process, and setting goals for the future, and working out the weak spots in my brain are really helpful, and I’d recommend it to anyone pre or post-op.

Another big boon to coping and recovery has been hearing aids. I have a set of Phonak Cros-Aids that pick up sound from my dead ear and transmit it to my good ear. They have restored a more normal range of hearing, and my brain has begun to actually figure out which side the sound is coming from, even though all of the sound goes into one ear. Pretty incredible. I find them particularly helpful in restaurants and meetings. They don’t help with the tinnitus, but to my surprise, they also don’t make loud noises any worse, which I obviously appreciate. They are super tiny, and only very rarely does anyone even notice that I’m wearing them.

Phonak Cros-Aids

I have a very big year ahead of me professionally and personally, and one of my resolutions is to not let my health situation be a constant topic of conversation. I’ll write the blog now and again, and share new information with friends and family as necessary, but I need to try to move on. I’ll keep actively seeking answers, opinions, and options to improve my quality of life, but I don’t want to keep defining myself with this thing anymore. I know I’ll have bad days whenever a storm front rolls in, or I’m too tired, or I fail to eat well, or some other random event scrambles my brains and balance. But I’m having some good days now, too, and my goal is to focus on those and stay in the goldilocks zone as often as possible.

Thanks for reading, and I hope 2015 brings health and happiness to you all.

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Permanent Profound Hearing Loss

I saw Dr. Wiet yesterday for my four-month review. Mostly though, I saw his audiologist. It’s official. My right ear hearing loss is permanent and profound. What I do hear is unuseful and distorted. The tinnitus is likely to stay, too, and has been deemed at the upper end of the moderate range. We talked about neuromonic therapy and cros-aid hearing aids, but at an uninsurable $8,000 price tag for both combined, that ain’t happening any time soon.

He told me to get on with my life. But I still have a lot of “good ear” bilateral SCD symptoms that make my days unpredictable and my weeks uneven. Loud rooms are difficult. Whispers almost impossible. The limbic system of the brain is in a constant stress cycle due to the tinnitus, as the brain creates the sound itself to make up for the loss, but then perceives that sound as a threat, activating the fight or flight stress instincts and causing constant edginess and mental fatigue. I think I’m dealing with all of that pretty well. It’s the hearing that bothers me the most. And worrying about my left ear going bad, too.

I need a new plan. Insurance does at least cover the cognitive rehab, since we’ve met max out-of-pocket, so I’m hopeful about that.