Truly silenced, but maybe heard

It’s ironic that my last post was about being silenced, about the unheard voice crying out for help.

Sana is a musician. She’s only 13, so it is premature to pin hopes on her talent, but she’s got a voice, a big one. She’s been studying classical voice since she was old enough, and before that did Children’s choirs. She plays flute and piano, but singing is her first love. This year she auditioned and won a place in a well-respected arts academy for high school to train. She works hard and loves her craft.

The final stop in the doctor rounds was ENT. She went through three days of testing there, scans, pressure tests, eyes, ears, balance, you name it. We finally received a diagnosis, sort of. It’s a nebulous thing, loose and unclear to me, with no easy resolution.

She meets the criteria for Ménière’s syndrome, which is the same criteria as Ménière’s disease. However, the don’t move it to the “disease” line until it becomes idiopathic, meaning they don’t know what’s causing it.

Her official diagnosis at this point is “third mobile window” meaning that somewhere in the inner ear there is a gap in a place that should be closed, causing a pressure imbalance which causes the vertigo and nausea. There are some hearing related symptoms too – loud noises make her dizzy, she can hear her pulse inside her head, and sometimes her own voice makes her dizzy. She has tinnitus and a feeling of “fullness” in the ear, and feels like she can’t distinguish words even though her audiograms are good.

The scans showed two places that are possible issues – the bone above the superior semicircular canal, and (hoping I have this part right because it’s a blur in my head) a bone between the craniofacial nerve and the cochlea. Or maybe it’s something else there he saw… I have written possible craniofacial dehiscence in my little notebook.

There’s surgery for all this. Bone putty and plugs, peeling back portions of the brain or going in blind with laparoscopy. I’m not sure how it all works, except that different doctors use different methods, but our doctor is trying a conservative approach first. He’s treating as though it is Ménière’s or perilymph fistula, with diuretics and diet and strict behavioral modifications. One of those modifications is no singing for 6 weeks (and no flute). She is lost and voiceless, wandering through her world like a ghost.

So, TL/DR, it’s ironic that I talked about being silenced metaphorically, and now she literally is.

The fear of being silenced

Many years ago, Sana got sick. I think she had mono. I’ve heard the tests most doctor’s offices use are inaccurate. She was tested, and it was negative, but so was flu and strep. She had fever and sore throat and swollen glands and a god-awful post viral inflammation response.

She was tiny – six when she first got sick, and it came on suddenly. Her teacher was so scared of her fever that she actually snuck her Tylenol at school, against all the rules, since I was half an hour away. It was about 104, and she was in pain. I brought her to urgent care, and they sent me to emergency. They got the fever down to about 100, and it stayed there for almost six months. (Yes, I know that isn’t TECHNICALLY a fever. Yes, the doctor told me to stop taking her temperature. I didn’t stop.)

Her skin was pale, huge dark circles under her eyes, and rashes around her nose and mouth and on her cheeks. Her knee was in pain constantly, and it was red and hot and swollen. She complained of abdominal pain, crying for hours on end. She had mouth ulcers, strange skin reactions to the sun, unexplained rashes, and the constant non-fever slightly elevated body temperature.

Doctor after doctor ran tests. Her ANA titer test was positive (inflammation marker, basically – sometimes auto-immune but sometimes not. Post-viral can cause it but they didn’t tell me that at the time). LDH was high, bilirubin high, white count high, slightly anemic… we took so much blood, and we waited almost a year to see the single rheumatologist available in the city.

During that year, she complained about the knee pain so much, she eventually refused to walk on it. Her doctor suggested crutches, and life sort of normalized. We went into the rheumatologist’s office with her on crutches and a binder full of test results and photos of rashes. The doctor spent three minutes in the room, diagnosed her with a somatoform disorder, and told me to get her mental help. We repeated the ANA test and it was normal, so we packed away the crutches and convinced her that she was fine without them.

I brought her to a psychologist who diagnosed a generalized anxiety disorder and OCD, but they were doubtful about the somatoform diagnosis. It didn’t matter. We were done with doctors. Sana agreed. CBT was good for her, and after two years of working extensively on managing anxiety, she declared herself graduated. Her psychologist agreed, and pulled me aside at the end of her last session. “I think it’s time for you to consider that the Illness caused the anxiety. I don’t believe the anxiety was the source of the Illness.” It didn’t matter. We were done with doctors. Sana agreed.

She’s thirteen now. This school year, she started complaining of dizziness. I’d experienced a lot of fainting as a child. I have a hypermobility spectrum disorder, and nowadays I think they’d call what I had POTS but at the time they just gave me fluids and salt and told me to stand up slowly, so I didn’t stress over her dizziness. I’d gotten better once I had my first child, so I figured it was a normal girl development thing and I blew it off.

She had COVID in December. In January, she had a couple of scary blood pressure drops and unexplained rashes. I was worried about heart complications so I called her doctor. I couldn’t bring her in though; I was still COVID positive myself and pretty ill. The dizziness grew worse, and the blood pressure thing repeated a few times. We kept an eye on fluids and reminded her to stand slowly, but it wasn’t enough.

About three weeks ago, she started vomiting almost every time she stood or moved around. We thought it was a bug, but after several days it became clear that it was related to the dizziness. I did a lying/standing blood pressure and pulse test and it showed a significant rise in pulse and drop in pressure. I made an appointment with cardio to get it checked, but it was about two weeks out. In the meantime, she fell at home and at school on the stairs, and hit her head. I brought her to the ER and they setup appointments with immunology and neuro also, and we scheduled with an ENT who specializes in balance.

Immunology and neuro definitely felt that it was orthostatic. Cardio on the other hand was very wishy-washy. Both Sana and I walked out feeling dismissed. They prescribed meds and recommended “lifestyle changes” but it still just felt like a pacifier.

I don’t know that it’s orthostatic, since they couldn’t recreate the heart spike in the doctor’s office. But on the other hand, the machines weren’t working right. Everything was manual and it was weird and half-assed. Her left ventricle mass is low compared to the rest of the heart. According to the cardiologist that doesn’t matter. I don’t know. I hope the ENT has answers. I hope it is something simple like an ear infection – give her antibiotics and it’s all better.

I think we both have PTSD though. I know people use that term lightly. I’m not. I can’t sleep. I feel sick and scared and have nightmares that we get told it’s all in her head. She’s exhausted and drained. We dread (DREAD) doctor visits. We hate this so very much. I’m crying every day, hating myself for looking for symptoms of psychiatric issues. I don’t see them, honestly. I see a child in distress. She’s walking into walls, stumbling, vomiting, sheet white. And I am questioning my child, who needs me to fight for her.