ST. ALBERT, ALBERTA – In the world of medicine, it’s relatively easy to determine if a bone is broken and then fix it with a cast. But what happens when there’s something seriously wrong and the doctors know neither what the problem is nor what to do about it?
Now you can begin to appreciate the misery of the situation Teri Zubick has found herself in over the last year. She has been in severe pain combined with lower extremity numbness and paralysis to the point where she can’t work, function normally, or even sit. On top of all that, her sacrum is being eroded, which will put her health in an even more dire predicament.
The source of all this is rare enough. It took several months for the medical system to even figure out what was causing it all, but the fact that most people with her diagnosis don’t even have symptoms created an extra level of difficulty for the medical system.
“When I got my diagnosis in September, the first thing my doctor said to me was, ‘You've got a giant Tarlov cyst. I've never heard of it. I don't know what to do. We don't see this ever,’” she began.
According to the American patient advocacy organization National Organization for Rare Disorders, a Tarlov cyst is a fluid-filled sac on the spine that can push against the nerve roots. The most common cause is the person falling on their tailbone, which Zubick did several years ago.
Typically, the condition causes no symptoms, and the person carries on with life totally unaware, as if nothing was wrong.
For some reason, the cyst on her spine is large enough to compress five major nerves, including the ones that control her legs, her bowel, and bladder. She experiences sciatica, and indescribable agony of “severe pain ... lightning bolts ... stabbing pain” in her feet and toes, coupled with numbness to the point of paralysis in one foot.
What started as a back spasm a year ago has left the otherwise “super healthy” 35-year-old woman who has a black belt in karate now mostly bedridden and in severe debilitating pain. She can’t work, can’t watch her three kids play sports ... she can’t do anything she would normally do.
This leaves Zubick with a lot of questions, starting with, “how could all of this damage be done without it being immediately identifiable and treatable?”
"The biggest thing I would say was the struggle just to get doctors here to understand and help me. I drastically declined very, very quickly in a matter of months, and they were just at such a loss that it was just appointment to appointment. Each one took weeks to get into and then weeks to hear from them, and then weeks to get back to this person,” she recounted, clearly frustrated with the stress and challenges she faced in getting a diagnosis and finding someone — anyone — who could help.
It’s a rare spinal disease, she confirmed, and the risk of further neurological damage, paralysis, or cerebrospinal fluid leak makes any operation hazardous.
“The biggest issue when diagnosed with a Tarlov cyst is that radiologists are taught that these cysts are incidental findings, and of no medical significance. They are taught they do not cause symptoms or pain. Because of this lack of knowledge and awareness, patients do not get the care that they need and [that] is a large factor for our struggle to get help,” she later explained in an email to The Gazette.
The longer the wait for diagnosis and treatment, she continued, the greater chance of nerve damage and the more the sacrum can erode. A patient's mental state also erodes because of the constant terrible pain, their worsening state, and the delay in obtaining treatment.
Zubick had to do her own research on where she could get any help. Few doctors in Canada have even seen any patient with one of these cysts, and there is no documentation that any have ever operated on one successfully.
She found an American doctor who takes foreign patients a few times a year out of a clinic in Cyprus. That’s the good news.
In 2020, Alberta Health changed its guidelines and now won’t cover any out-of-country surgeries, however. That leaves Zubick and her family on the hook for all of the expenses, which will reach close to $100,000 including the travel costs for her and her husband, Travis.
Add the cost of that treatment to the list of her stressors, too.
Her operation is scheduled for May 9. A GoFundMe campaign has been started to help her raise the money. Right now, she’s still waiting, fighting the pain, and putting all her hopes in the surgeon’s hands. For now, it’s her best and only option.
Beyond all that, what is really important to her is that something in the system changes so people with rare diseases such as this can get diagnosed faster. Her health worsened rapidly because it took so long for any doctor to determine a Tarlov cyst was the source of her ailments.
That means when she finally gets to the surgeon, the operation will be even more precarious.
"They just don't know anything about it. They don't know the symptoms it causes, the pain it causes. They just don't really understand. They didn't understand how bad it could get and how quickly it can progress. That was the biggest, [most] frustrating thing. Had I not done all this research on my own, had I not joined these support groups and sent my stuff to other doctors, I would have been sitting here still waiting for answers."
