On February 15th, 2020 I went into the hospital for severe head pain.
When I went to the emergency room and they couldn’t get the pain to come down, I was admitted for observation. That turned into what would be a 16 day hospital stay.
They did all the scans (some more than once). They tried a litany of meds, most of which did nothing, or barely made a dent.
When I was finally released, it wasn’t because my head pain went away, it’s because the next test they wanted me to have was on hold until they got some dye in that was on backorder.
After being released from the hospital, I was referred to neurology.
The first neurologist they had me with ended up passing me to her superior because she realized pretty quickly she was out of her depth.
Once I was placed with a new neurologist, we tried more meds, an injection, physical therapy- nothing worked. The only thing that helped was Prednisone- high doses of it. So that’s what she kept me on until, after 8 months and a 25lb weight gain, I couldn’t take it anymore.
I told her at one point that my other doctor suspected I had Ehlers-Danlos Syndrome. Her response was, “I don’t think it’s that.”
Fast forward several months when it was finally time for my appointment- SURPRISE, I have hypermobile Ehlers-Danlos Syndrome (hEDS).
I was searching the internet high and low to try and find an answer for my head pain.
Everything I read pertaining to hEDS, and my other issues, led me to believe I needed to seek out an upright MRI. One article after another said it was the BEST way to rule out certain things- things that felt very familiar to read about.
When I asked my neurologist about ordering an upright MRI, her response was, “You’ve already had so many scans. I don’t think it’s necessary.”
When I had my first appointment with renowned geneticist, Dr. Clair Francomano, she listened to every single issue I was having, and ordered an upright MRI straight away without me having to ask.
When I got the results back- craniocervical instability- I was relieved to have an answer, and all in the same breath, pissed the fuck off at my neurologist.
So, what do we do when doctors drop the ball?
In some instances, if significant and trackable damage was done, you can sue. But I don’t have a case for medical malpractice. Her lack of proper treatment didn’t cause irreversible damage (at least not that I know of yet). I can’t sue her for having me on high dose steroids, causing me to gain an absurd amount of weight. I can’t sue her for my continued pain.
I also couldn’t standby and do nothing.
I don’t enjoy conflict. It gives me anxiety. But I knew I had to confront her.
So, I wrote her a letter, one that I’m posting in this blog for you to read. I share this because I know a lot of my fellow Zebras have been in the same or similar situations, and need help knowing what to say, or how to say it. I don’t want anyone to feel like they’ve been failed by a doctor and can do nothing about it.
Writing and sending this letter helped me mentally and emotionally. Putting everything I had to say in writing was its own kind of therapy.
If reading what I’ve said in this blog feels familiar to you, but you haven’t brought yourself to hold your doctor accountable, I hope this will give you the confidence to do so.
Without further ado…
In June, I drove down to Carmel to get the upright MRI my geneticist ordered. The upright MRI I didn’t even have to ask her for. The one she decided was 100% necessary based on everything I’ve been experiencing and the pain I continue to have every day.
I just received the results of that scan this past Friday.
They showed significant craniocervical instability.
Everything I’ve read over the last year+ has said an upright MRI is the BEST way to identify this kind of thing, as it is regularly missed or difficult to see on regular MRIs or x-rays. And yet, when I asked you to order one, you said you didn’t think it was necessary.
To that end, when I told you they suspected I had EDS and that I was waiting for my appointment with one of the most renowned geneticists in the country, you said, “I don’t think that’s it.”
Instead, I was put on high dose steroids for 8 months, causing me to gain a ridiculous amount of weight and suffer from a host of other side effects, and still, rendered no answers.
I’m being referred to a neurosurgeon for the next phase of care, as he and his team decide what the best plan of action will be, considering how long this has been going on and how badly it infringes upon my quality of life.
I believe you were out of your depth in caring for me. This is not a personal dig, as I think you’re an objectively friendly and nice person, but it’s clear you’ve had very little experience dealing with a patient that has uncommon medical complexities.
I know in medical school there’s the whole saying of “When you hear hoofbeats think horses, not zebras,” but I’m here, a living example of the existence of these zebras they tell you not to look for.
In the future, when you stumble upon another one of us, I hope you’ll think of me, and take a different approach to the care you give them.
Connective tissue disorders are real, and they commonly cause issues with the spine. Upright MRIs are the gold standard for us, and they’re available in 2 locations in Indiana.