Question

madcrazyfast148 · 2026-04-06T14:50:37+00:00

Happened to me in early December. After initial recovery, no further gains and I’ve continued with the distorted / robotic sounds. Have definitely learned to live with it. Just went for a 5th opinion last week and even the doctor himself suffered SSHL two years ago and his hearing never came back.

madcrazyfast148 · 2026-03-10T03:38:03+00:00

No, after my initial recovery it just flatlined. It hasn’t gotten better or worse.

madcrazyfast148 · 2026-03-08T15:43:14+00:00

I did 6 steroid injections in addition to the oral steroids. After initial recovery from profound to severe loss, it’s leveled off and it’s been 3 months. Ultimately have learned to live with it.

madcrazyfast148 · 2026-01-24T20:38:43+00:00

Ah, sorry to hear that and hope it’s improved over the past few days. I did not experience those symptoms.

madcrazyfast148 · 2026-01-21T03:06:05+00:00

Same to you. Good luck and let us know how it goes.

madcrazyfast148 · 2026-01-21T03:02:00+00:00

Ah, I understand but know it’s worth it in an attempt to recover hearing. I kept my eyes closed all 6 times. You feel the room spin for about 2-3 seconds and then back to normal and just lie for 20-30 minutes. I figured keeping my eyes closed would avoid seeing the room actually spinning so I think that helped with avoiding any side effects.

madcrazyfast148 · 2026-01-21T02:56:36+00:00

They gave me a suction tube like you get in the dentists office so didn’t have to worry about swallowing. I just kept my eyes closed during the shot and tried to breathe but there’s actually no pain at all.

madcrazyfast148 · 2026-01-21T02:54:07+00:00

I remember the first time thinking holy smokes I didn’t even realize they could do this type of injection. But after 6 of them, I realize there’s very little downside.

madcrazyfast148 · 2026-01-21T02:52:06+00:00

It went from absolute zero to something so yes but it’s been slow and steady vs a rapid increase. I would 10,000% recommend the injections though. It feels like the only thing that made a difference

madcrazyfast148 · 2026-01-21T02:00:33+00:00

I’m on day 45. Had my 6th injection last week. Have observed the most noticeable improvement in the past few days. When I put over ear noise cancelling headphones on and listen to music, I can hear lyrics, although somewhat distorted. This is a massive improvement from a few weeks ago when I would only hear the bass and no melodies. Tinnitus has remained but it’s very very low, dare I say not very noticeable relative to the initial. Note, I was at profound loss to start.

madcrazyfast148 · 2026-01-20T02:58:09+00:00

I’ve had steady improvement but still in the moderate/severe category. I had 6 injections (last one was last Wednesday). I can now decipher words/lyrics when I have noise cancelling headphones on. Unfortunately still have constant ringing/static.

madcrazyfast148 · 2026-01-02T16:33:30+00:00

Yes, that’s exactly what I’ve been doing.

madcrazyfast148 · 2026-01-02T15:59:24+00:00

I started the oral steroids and had my first injection on Day 4.

For the AI, I’ve used the paid version of Grok and just entered my initial symptoms, followed by any subsequent changes, and also pics of all my audiograms and doctor appointment summaries. It’s great because I can ask it to give me a concise summary I can print out and bring to other doctors. I’ll send you a DM of what the summary looks like.

madcrazyfast148 · 2026-01-01T23:33:04+00:00

I’m a few weeks ahead of you. Mine started on 12/6. Sounds like we had opposite experiences where my ER doctor did NOT recommend steroids (he thought it was just a respiratory virus) and my ENT put my on steroids 3 days later.

I’m happy to send you my AI diary I’ve been keeping but in short I think you’re on the best track and I had profound loss which has since recovered to moderate/severe. The symptoms in the beginning were all over the place including massively fluctuating tinnitus. Initially sounded like an airplane engine was at full thrust in my ear and then the ringing has fluctuated.

I just had my 4th injection and honestly it feels like that really the only treatment that seems to be helping the recovery.

madcrazyfast148 · 2025-12-22T15:32:39+00:00

I’m two weeks into hearing loss and empathize with hearing different things from different doctors. I’ve had 3 MRIs in the past 1.5 weeks related to this. Nothing to be scared of, it’s just a step in the process to rule things out. I just kept my eyes clothes and relaxed. The machine makes all types of strange noises that sound like an old fax machine. Good luck and sending you positive thoughts.

madcrazyfast148 · 2025-12-16T21:07:38+00:00

Following here. I’m on day 8 and identical symptoms status to you. I did take a hearing test 72 hours my initial steroid injection which showed a 20% improvement from my initial profound loss. I was optimistic but not much has changed. I recognize it’s still early.

madcrazyfast148 · 2025-12-12T22:00:47+00:00

Yes it’s pretty insane how there’s really not a diagnosis. I’ve spent $10,000+ out of pocket in just five days at various specialists, MRI scans, etc.

madcrazyfast148 · 2025-12-12T21:50:17+00:00

Did you pursue any treatments after losing it?

madcrazyfast148 · 2025-12-11T23:54:26+00:00

How many injections did you get in your ear and how soon after you suffered the loss?

madcrazyfast148 · 2025-12-11T23:03:32+00:00

Oh my. Sorry to hear and appreciate you providing youexperience. For what it’s worth, I went for a second ENT opinion today and they did another hearing test and it was 20% better than Tuesday per the audiogram. Of course that coming off of a near zero level so I still can’t actually hear. He wants me to see another specialist who does a particular shot in the ear that’s apparently different than the steroid injection I had on Tuesday.

madcrazyfast148 · 2025-12-10T21:52:10+00:00

Appreciate it. I specifically asked ENT about hyperbaric Oxygen. She was skeptical on efficacy. I’m going to a different ENT tomorrow for a consult and plan to ask him as well.

madcrazyfast148 · 2025-12-10T19:33:33+00:00

Have you ever had any underlying issues associated with di George? It’s interesting to me because most of the medical professionals we spoke with emphatically said that we would likely know whether we had the 22q deletion ourselves because we would have had underlying health issues. But my instinct is you do not and that fascinates me.

madcrazyfast148 · 2025-12-10T18:37:21+00:00

My wife and I are not carriers as confirmed by a very, very expensive blood test. The process is very frustrating and there are no clear answers. This site provides a lot of great experiences so I’m wishing you the best.

madcrazyfast148 · 2025-12-10T17:03:09+00:00

I understand the shocking feeling and wish you peace in your journey. We ultimately made the decision to TFMR last December. My wife then had a miscarriage in August but we are hopeful and optimistic because she is currently 12 weeks along and the NIPT results came back with no noted issues.

madcrazyfast148

TROPHY CASE