My Journey with Sudden Sensorineural Hearing Loss

First, I’d like to say thank you to everyone who has reached out to me asking if everything was okay when I closed up the bakery for the month. You are all so sweet and caring and I appreciate each and every one of you! I hope to be baking delicious goodies for you all again soon!

So what’s going on?

Sunday, August 22nd, I randomly lost hearing in my left ear. Little did I know at the time, I would be diagnosed with sudden sensorineural hearing loss or SSHL just a short bit later. My ear felt clogged, I thought I was either getting sick or maybe even developing allergies. It happened about midday and my hearing slowly disappeared over an hour to two. I can not even hear the friction of my finger touching my ear. This was followed by a very loud and consuming tinnitus (ringing in the ear) and complete disorientation.

Because only one ear was working, my right ear felt like I was in a whirlpool taking in too much sound. I couldn’t tell sounds apart, nor could I tell which direction things were coming from. My daughter fell right next to me and I couldn’t figure out where she was. This was incredibly emotional for me, not knowing how this would impact my parenting. Would I still be a good mother? What if I lost hearing in both ears and I would never hear my kids again?

I called Monday and got a doctors appointment the next day. I went in and the doctor seemed very concerned. I was put on an antibiotic and given steroids and a referral to an ENT. I had to wait 3 days to make an appointment with the ENT while insurance approved of everything. Meanwhile, I was having a ton of pressure and sinus pain. I also spent my days researching what could be the cause.

Did you know sudden hearing loss is a medical emergency?

Apparently, you have a small window of 2-4 weeks to save your hearing–if at all possible. It’s not guaranteed, but if you want to increase your chances, you need to get in right away. If you’re reading this blog and have also suddenly lost your hearing–GET TO A DOCTOR. Get a referral to an ENT right away so they can perform the proper testing and come up with a course of action.

So I waited at home for everything to be approved and was stressing out as each day passed. I had an appointment with the ENT 10 days past when I first lost hearing. I was both excited (maybe more relieved) and terrified for this appointment not knowing what to expect.

I had an audiogram test done and my right ear was fine, but my left had nerve damage and I have moderately severe to severe hearing loss. I cannot hear voices or laughing, I cannot hear most loud sounds, I cannot hear my husband’s heartbeat. If I do hear a sound, it’s a weird muffle. Sometimes when someone speaks right next to my ear, I can hear a voice, but it sounds like a computer or vibrating noises. Certain sounds cause me a lot of pain as if I’m standing next to a guitar amp and there was loud feedback.

I had a mix of emotions with this test–first, I was so thankful that I found out I was still able to hear some sounds, as muffled as they were. Second, I was disappointed with how bad it was, even though I obviously knew I couldn’t hear.

I also want to emphasize the fact that my loss of hearing is not silent or at all quiet.

I have a roaring hiss or ring constantly playing nonstop which makes it really hard to hear other things and focus. In fact, I find the noise much more bothersome than just not being able to hear. Some people asked me how I knew I lost hearing, and I can only say that there was no way I could have missed it with this loud “sound” of roaring emptiness.

The ENT has been amazing and took the time to answer all my questions and fears. There’s still a ton of unknowns. Right now, the plan is to attempt to treat the hearing loss first and then to try and figure out what happened. This of course means an MRI and other things to see if there is a tumor or something else.

The treatment is aggressive and I’m am thankful for it. If there is any minuscule chance of getting my hearing back, I want to go for it. I am on a high dose of oral steroids which I never want to be on again if I can help it. This is the main reason why I shut the bakery down. The meds make me feel sick, weak, unable to think clearly, and my anxiety is through the roof. I didn’t want to mess anyone’s order up right now and disappoint them. So thank you all for your understanding!!!

I also have had two steroid shots through my eardrum. For those of you who might have to get this, I will tell you, I was terrified. I will also tell you, it doesn’t feel as bad as you think. The doctor numbed the area and then gave the shot. You can’t move, talk, or swallow, for 30 minutes (which also sounded impossible) but it’s totally doable. The week after my first appointment I had another shot with no numbing medication because the doctor went through the same hole and it didn’t hurt at all. It was amazing. The medication does make you feel horrible later in the day, but it is short-lived.

It has now been 20 days with no change in my hearing. I’ve had two audiograms and I will go in again in 4 days for another. I still am hoping for some return of my hearing, but everything seems random with chances of possible recovery. I tell myself that I got help as soon as I was able and that is all I could do.

I will say that my right ear has been adapting and I am so impressed with how the body responds. I hope that I will regain some of my hearing and/or the tinnitus quiets and I will be able to report back some happy news to you.

XO,

Carolann