Worst Birthday Ever

The day before my birthday (in early September) I spent 8.5 hours at the emergency after 45 minutes with my usual eye doctor who could not stop my eyes from seeing double, occasionalily triple and more. My optometrist said he was fairly certain it was neurological and told me I should go to emergency at the local hhospital where eye emergencies, surgery and specialist care are handled.

Sure, he isnt an MD. Still, I started to cry. Then I got a ride to ER.

The wildly blurry, nausea and anxiety inducing vision changes started after I caught some virus that made my head hurt so badly I could not get out of bed and took gobsmacking doses of painkillers for several days. I had never had such bad headaches except quitting caffeine and these were way more intense.

The ER doctor of course had no idea what was wrong with me and chastised my optometrist for sending me to Emergency instead of calling an Ophthalmologist. I nodded, not explaining that the optometrist had said if he referred me I’d be waiting weeks at best, even on an urgent referral.

Ah, public health care. Time sensitive it does not do well. (More on that below.)

ER doc made a call and gotvme an appointment the next day with the on call Opthalmologist at the specialist eye clinic in the same hospital.

In the Uber on my way to that appointment the next morning, my driver asked why I was going to hospital, visiting someone? I said no I have to see an eye specialist. He asked why. I said, simply, I have double vision.

He immediately described symptoms that sounded identical to mine after having said that he once had terrible double vision all of a sudden. I asked if he saw a doctor. He had. I asked what had caused it. A stroke, he said, but he had no other symptoms. His double vision cleared up in it’s own a week later.

I’ve had this for about a month now. It got progressively worse over the first week and hasn’t changed much since.

It is neurological, said the Ophthalmologist after many tests and various visits from an Orthoptist and another eye clinic technician whose title I forget.

He referred me for a CT scan of my brain and orbitals (eye sockets), although he has since called me to tell me: (1) I have a CT scheduled for March 2020 that he is trying to get changed to October); and (2) that an MRI would be bbetter but he referred me for CT because the wait for MRI would be even longer. I’ve asked about paying privlately. It is complicated but last week he said we can look at finding a private neural-radiologist if he cannot get an earlier date than March 2020.

Meanwhile… 6 hours into day 2 of my tine spent at hospital earlier this month, I was given (and have to pay for) and still have a fresnel prism in the right lens of my eye. This is a plastic film with dinosaur-like ridges or lines that create a prism to help my brain see one image blurrily but not 2, 3 or more. The Orthoptwist at the eye clinic in the hospital installed it after the Ophthalmologist told me:

(1) I have a partial palsy (paralysis) in one of the six nerves connected to my right eye and mild strabismus, in both eyes but worse in the right one; and

(2) I need to take a low dose aspirin every day until we know why.

I immediately asked if he suggested the low dose aspirin because he thought I’d had a stroke. He said “we can’t rule that out so until we know you should just take it.”

Between the hospital and my regular doctor, Multiple Sclerosis, Myasthenia Gravis, Diabetes, kidney disease and hypertension have been ruled out. Stroke (transient ischemic attack or mini stroke, to be more precise), aneurysm, tumor and other brain injury are still on the table as potential causes. I’ve had no recent blows to the head or other head trauma.

When the lab technician at the hospital who drew my blood after this news was delivered (to check kidney function and rule out kidney disease causing stroke, if I understood the Opthalmologist correctly – I was pretty stunned by then) wished me a happy birthday, I burst into ugly tears. His distress – like my own – was palpable. It had been a really bad day.

I have been struggling. I cant drive safely as I cant see well and my brain gets tired trying to do so. I am scared. I had requested mental health support. It would be an understatement to admit that doing so has not been a good experience.

At one point I considered how great it would be if I could do graduate research and a thesis on how the medical profession in my country and maybe others renders professional, articulate women invisible. If you can explain clearly and haven’t fallen apart completely yet, you must be fine.

I hope to find out this week that I either have a CT scan booked within the month (which may lead to a MRI r down the road) or a referral to a private, competent neural-radiologist for a MRI and report to be paid for at my own expense (I have been told my insurance likely wont cover that cost).

I am trying to stay afloat. That is as good as it gets for now.

3 thoughts on “Worst Birthday Ever

  1. This is utterly insane. I am so sorry you’re going through this. The obstacles must be maddening. Thinking of you. Hope you’ll keep us in the loop. ❤️

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