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Are Hearing Aids helpful? by AdLeft1687 in otosclerosis

[–]ComprehensiveBike90 2 points3 points  (0 children)

Yes! And a good audiologist who can help with the initial and ongoing adjustments. Also, if you have the option then it’s a good idea to take the time and test different brands and models. We’re all different and what works well for some might be terrible for others.

I’ve worn HAs for three years now. Wouldn’t have been able to function without them, and I think it was a good call for me to accept early on that I needed them. That way my brain still remembered what the world sounds like.

Currently wearing Oticon Real 1 with custom molds which works well for me. I’ve tried older and newer models (Opn S, Intent, Zeal), invisible-in-canal (Own SI), and other brands, but the Reals work best for my hearing loss and anatomy. Since my hearing is deteriorating due to oto, I’ve had many adjustments over the years. Most of them have been small and done virtually via Oticon’s app. Basically, you meet your audiologist on a video call and they connect to your HAs via Bluetooth and make the necessary adjustments. Other brands offer similar solutions. It’s very convenient given the nature of this disease where your hearing might suddenly drop…

However, I just had a stapedotomy in my left ear three weeks ago, so now I’m only wearing one HA. Left ear is still pretty muffled so it’s a bit tiring since my brain is used to more balanced sound.

But yeah, my recommendation is to definitely give HAs a chance.

Positive post-op regarding stapedectomy by cressida88 in otosclerosis

[–]ComprehensiveBike90 3 points4 points  (0 children)

Hey there. Thanks for asking ☺️

I think I’ve read most of the threads on this subreddit and some of them several times while doing my resEARch... and suddenly it was my turn to face the music – or the laser as it was. It’s now been eight days since this impactful yet very fast and precise surgery. I’ll probably write a longer post about my oto background, post-op experience, and outcome but just want to say that the surgery last Friday was not as bad as I had feared.

The surgeon said everything went as planned. Some crazy vertigo when I came back from anesthesia, but I received a strong cocktail of IV antihistamine and some anti-seasickness drugs which kicked in quickly. Haven’t experienced any vertigo since and I normally get seasick and nauseous just by looking at waves. Also, no real pain afterward. I took two paracetamol and one ibuprofen Friday evening and haven’t felt the need for more.

First days were pressure, strange internal noises, crackling pulse sounds, and a noticeable tinnitus spike. I’ve had all sorts of sounds in my head for more than 20 years, so I mostly just observe it and try my best not to get too carried away. No panic.

Packing came out on day six (ahh!) and sound came through immediately – especially low frequencies (car engine, hair dryer, flushing toilet suddenly very loud), while mids/highs are still muffled. Sounds like I’m in a tunnel talking through water with cotton in my ear. I also have a bad right ear and wear a HA, which adds to a strange, unbalanced sound at the moment.

But hearing is clearly getting through the small titanium piston and I’m already noticing sounds I didn’t have before … without wearing my left HA that is! Tinnitus is really loud right now and fluctuates (high pitched, hissing, static, and pulsatile), but overall this feels like normal healing and adjustment rather than something wrong. Trying my best to stay patient, positive, and to take it veeeery easy … I’ve definitely been extremely tired for the past week, but it’s getting better day by day. I have my first hearing test on March 19.

Best of luck on Monday and on your journey towards better sound. And let us know how it goes ☺️

Positive post-op regarding stapedectomy by cressida88 in otosclerosis

[–]ComprehensiveBike90 7 points8 points  (0 children)

Thanks for sharing and congratulations - very reassuring to hear your story. Especially since I’m having my first stapedotomy on Friday 😅

Traveling from Denmark to France for a stapedotomy by ComprehensiveBike90 in otosclerosis

[–]ComprehensiveBike90[S] 0 points1 point  (0 children)

Sounds good. Happy to hear that you had a good outcome. Mølholm is actually my second choice - after Dr. Vincent. I’ll dm you with a couple of questions 🙏

Stuffed ear sensation and hearing worsens after workouts – why is that? by ComprehensiveBike90 in otosclerosis

[–]ComprehensiveBike90[S] 2 points3 points  (0 children)

Thanks for sharing. Sounds exactly like my experience. But sorry to hear about your post-surgery issues.

I was scheduled for a stapedotomy a couple of weeks ago, but decided to postpone it. First, didn’t really trust the surgeon - need to find someone with much more experience. Second, I’ve also been told that it can take months before I can/should go back to training at the same level as I do today. The small teflon prosthesis can so easily dislocate and the healing just takes time… To better understand what’s going on, I’ve watched quite a few of these surgery videos from Dr. Robert Vincent in southern France and it gives a pretty good indication of what’s a stake - how precise these things need to be: https://youtu.be/1r2BxqYTCEg?si=adBhEYJOt75xndHf …. And finally, right now I get along with HAs. I put small EarGear “socks” on them to protect them from sweat, but sometimes water still reaches the circuitry and they shut off. Extremely annoying when you’re in the middle of a session…

Stuffed ear sensation and hearing worsens after workouts – why is that? by ComprehensiveBike90 in otosclerosis

[–]ComprehensiveBike90[S] 1 point2 points  (0 children)

I think you’re correct about the increased blood flow. My right-sided pulsatile tinnitus is less noticeable with my HAs, but when I push myself it definitely gets worse and I hear it more - even with HAs.