More of the story unfolds.
Sorry, no goofy pictures of Prince or other 80's or 90's references in this one. Just good old fashioned story here.
I mentioned church in my last blog. And it's something I struggled with in the past. But last Easter I was optimistic because Randy and I picked a church and took our little guy to his first church service. He was decked out in a cute Easter outfit (Brock - not Randy) and joined us for a contemporary service.
I was a little emotional to be back, but happy to have tried. It just didn't feel right. Maybe it wasn't the right fit. I wasn't sure. But I thought there might be another church to try again in the future.
Another flash forward.
Around the first or second Sunday in September 2014, right after I had to stop working because my seizures had gotten crazy and my life impossible, I decided it was time to ask for divine help. Plus, my mom was a church goer, she was staying with us and she really wanted to go. The year before we went to a craft fair at this beautiful church around the corner right before Brock was born where we visited a friend from an old Y I worked at. We thought it was a good place to start.
We walked in and we were greeted very kindly. A woman met us at the door. I was looking very weak and very pale at this point. She took very good care of me and asked if there was anything we needed. I explained that I was extremely sensitive to sounds, and that unfortunately sounds triggered seizures. That I had just found out that I have epilepsy but we wanted to try church anyway. Her face went blank. "My husband has seizures. He's the pastor here, she pointed up to the stage, she said she would do whatever it took to help me and my family stay and be comfortable. She pointed towards a family room where we could sit and that she would monitor the volume.
I was very grateful and thought that it was a very odd coincidence. She explained more of her husband's story and the surgery that had resolved his problem. I noticed the scar he had on his head and later researched it to see if it was my problem too - (thanks Web MD!) but it was not. And we were grateful and sat quietly and hoped a seizure was not going to be triggered by the loud music.
So...
We got through the first song. And part of the second...and then I started to feel a tingle in my legs. But at this point I had been carrying around ear plugs with me. I noticed that this helped in the past when I was at the movie theater, even though it didn't stop the seizure there, it delayed it. So, I always carried a pair with me. I grabbed the ear plugs and put them in, even I was getting annoyed with myself - having to leave places because I wasn't feeling right or feeling my" seizure spidey senses tingling." Like a backwards superhero.
So I didn't want to force everyone to leave. And then I was sure. Very sure it was going to happen. And what does everyone do when they see a seizure - ugh! They call an ambulance...and I had been through this over and over and over. Blah. So I usually I hide when I know it's going to happen and I really prefer to be in the comfort of my own home, whether that meant my bed or my couch or my floor.
I pulled the ear plugs out and then told my mom and husband we had to go, they knew by the look on my face that we had to move. So we booked it to the car. The woman came after us hoping that she could still help, but it was way too late. I got into the car and that's when I noticed, I must have pushed wax up into my left ear because I couldn't hear. Or I must have damaged my ear drum.
I had a seizure.
I don't remember where, I don't remember how bad it was. I don't remember anything else about it. There were so many at the time, it doesn't really matter. But the next day my ear was still bothering me. I felt like I had an infection or something but it didn't hurt. I had an appointment scheduled for my primary doctor that Friday to help piece some of this crazy together anyway, so I figured I would just talk to her about it then.
Friday came. I spoke to the doctor about everything, the tremors, the seizures, everything that had been going on, I didn't want my life in shambles! I thought she might help me put this whole puzzle together and have some ideas as to how to stop all of this craziness from happening. She was sympathetic, but no ideas. And the last bomb I dropped on her, was the ear. I thought it was an after thought...like a little cherry on top of a mound of a pile a trash. She took a look. She said it looked pretty normal. There was a little bit of cloudiness so she said to wait it out because whatever was going on was healing itself.
Phew!
Ok, worrying over. Doc said it was okay. Hearing will come back. A little inflammation, a little cloudy. Just wait. But another week went by, and nothing happened. No hearing returned. I called my primary care doctor again but she was on vacation so I thought, I don't want to wait if it's an infection, I need to get it under control. So I went to the Walgreen's immediate care.
The doctor there was very nice and listened to my entire long long story (as you are beginning to uncover). She said that my ear looked perfect. She looked like she wanted to cry. She said, I'll write you two prescriptions, one is drops, the other are steroids, but if they do not work in 5 days you should call an ENT right away. She placed her hand on my knee and said in a very kind voice, "I don't want to scare you, but you've had a lot of neurological things going on, you may need to prepare yourself that something has happened to your ear."
Crap, What does that mean? Ok, well, I have meds, so surely that will do the trick, finally someone gave me something to clear up this infection. The last time I had swimmer's ear with an ear I got some drops and it cleared up an infection in 2 days! Things were looking up and I was going to rest easy.
Day 1 - no change. Day 2 - no change. Day 3 - no change.
Ok, I wasn't patient enough to wait the full 5 days. I called the ENT and made an appointment right away. I explained my situation over the phone and they got me in the next day. I was on some terrible medication at the time. And I had to go to all of these appointments alone because whoever drove me had to wait in the car with the baby. So I was facing all of these potentially devastating conversations alone.
First step, check ear drums. I was sure it was ruptured. Nope. Both were functioning perfect. Ok.
Next step, hearing test. Listen for beeps. Raise hand. Felt pretty good about that too, thought I could hear some beeps in both ears. Not too worried, maybe this was something that could be fixed pretty easily.
Next step, recognize some words without reading lips. Right ear first. Balloon, Hotdog, Birthday. Easy enough.
Left ear. Shhhhhhhhhhhhhhhhh
I looked at the Audiologist with a blank stare. I shook my head. She tried one more time. I shook my head again and I started to cry. She looked like she was going to cry too.
She walked me into the doctor's room. He cleaned out my right ear in hopes to help me hear better out of my that ear and explained that I had no usable hearing in my left ear. He said there were a couple of possibilities. He said the one he hoped it was is something called an Acoustic Neuroma. It could also be causing my seizures. It's a series of tumors in your ear canal.
SWEET!!! Blast those tumors!!!! That's got to be it!!!!! Nice!!!!!
What's the treatment Doc?
Well first we need to do an MRI.
Oh crap.
But we can put you under.
Cool, I'm excited again.
But before we could get started 4 days later I woke up with a dampening in my right ear. I made another appointment at the doctor and lost 20% of the hearing in my right ear. Something was happening and I was hoping the doctor could diagnose me quickly.
I won't bore you with the details of the test because you already know that it wasn't the answer. I didn't have it, and to quote Arnold, "It's not a tumor." and we moved on.
I was moved right on to someone called an Inner Ear Specialist. I didn't even know they existed. At this point I was drugged up on that pretty terrible medication. And I was still looking for answers. Now I was hoping this new doctor would at least help me to understand why I've lost most of the hearing in my left ear and why my right ear was getting funky.
The appointment was odd. I was in a sea of people in white coats moving about and everyone there acted as though I should know what was going on. Maybe I should have done the research, maybe I was over medicated...don't know.
It was my turn to see a nurse. Blah blah blah blah, stick something in my ear and sit and wait. Then after a while, they took me into a room and this is how the conversation went...
"We've reviewed your medical record and we know you are on a lot of medication for your seizures but frankly you look like a drug addict. Is there someone here with you? Are you okay to move forward?"
"Move forward with what? My mom is outside with my baby, that is why she cannot come in, I have a ride, I just have epilepsy so I cannot drive. I'm okay, just on meds, I'm tired."
The nurse went through some kind of procedure, blah blah, numbing, blah blah 4 weeks, blah blah hearing restored.
Ok sign here.
OK, I signed.
I was instructed to wait in the chair for my name to be called and then make 3 more appointments for on the same day for 3 consecutive weeks.
"Barbara."
I got up, went into the room, sat down and then I understood. I saw the needle. They explained that I was going to get steroid injections in my ear, through my ear drums 4 times. They hoped this would restore my hearing. They said it wouldn't hurt, that they put lidocaine on the outside of my ear. They also said I wouldn't experience any results for 8 weeks.
Ok. Well, if you say it doesn't hurt.
Lie. Terrible, Horrible. Dirty. Awful. Disgusting. Lie.
Plus, I was so drugged up, I didn't read the fine print. The statistics on getting my hearing back weren't very good, and I was still going to get 3 more shots. How was I going to get through this? The pain lasted for hours. I wish in my state, I had been better at math because I never would have agreed if I realized that 50% of people saw an increase of hearing of about 20-55%. Those are not very good odds for the pain I was going through considering the rest of the pain I was already going through!!
So, did it work? I don't know. I haven't had a hearing test. But they are subjective right, so I should probably be able to tell you. No. It didn't work. I have no hearing in my left ear. But I don't think I've lost anymore in my right ear. And that is some really good news. Because I've really got to hand it to my right ear, it's working overtime and doing a really good job.
So what happened? It's kind of like the podcast Serial...we've got all the clues and all of these facts and images and everyone has their story but we won't every really know.
There are three theories about what happened.
1. The hearing loss is completely unrelated to any of the other factors that happened during the time I got sick. - SURE.
2. I had some kind of nerve damage - again unrelated to the epilepsy or seizures I was experiencing.
3. I could have torn a membrane in my ear or ears which allowed some of the fluid in my inner ear to drain causing a great deal of hearing loss in my left ear and some in my right. (this theory is not able to be proven, I've already asked)
So where does that leave me? I keep hoping that some of the hearing comes back...I'll test with my ipod on a given day and pull out my right ear bud when a song comes on that I don't know the words to just to see if I can make out the words. I can still hear some things out of that ear. Doctors just refer to it as "no usable" hearing because it's not helpful in anyway.
I'll still go for the test to see what they say, maybe there's some that's returned. That would be great. But I can't hear the tv very well and people have to stand on my right side to talk to me and it scared me for sure. But I'm okay. I added it to the checklist of things I've lost because of getting sick, but as I've been writing and discovering, the things I've been gaining has been growing too.
Plus, I hear that when a superhero loses one of his/her senses one of the other senses become much stronger!
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