The Sarah Taylor Story – A Chiari Warrior’s Journey
When I first started getting hit with symptoms, I was a divorced, single mother of three amazing kids; responsible not only to provide for them but to see them through life, unscathed by life’s situations, and showing them that there was nothing that if they worked hard at something, nothing could hold them back. I had just started to expand in my career as a self-taught auto technician. I was a woman making a place for herself in an industry traditionally dominated by males. July 3, 2015, was the day that my life forever changed. I was brought to the hospital with stroke-like symptoms. I was having visual problems. I couldn’t walk or talk. I had no idea who I was or where I was. The whole right side of my body basically stopped working and the right side of my face was droopy. I was brought to the ER and before the doctor would even try to figure out what was wrong with me, he ordered a series of drug tests. I passed every test, so he finally admitted to me. Once on the neurology floor, more testing was done. They performed an MRI, MRA, EKG and told us that all results were normal. I later discovered that was not the case.
One doctor refused to believe that I was not on drugs. She noted in my file that while she has no evidence to support it, she believed that I am on a drug that they hadn’t screened for, based solely on “my age, single mom status, and prior good health.” She also noted that they found a Chiari, but that based on my symptoms, she believed it was irrelevant (an incidental finding). I would love to see her now and show her just how very wrong she was. I firmly believe that what she put in my medical chart is why I have had such a difficult time getting the care that I need and deserve.
At this point, I switched my neurology care to another hospital. They went over my history with me and ordered a lumbar puncture to rule out Multiple Sclerosis, which showed banding in my spinal fluid. On September 14, 2015, I was officially diagnosed with Multiple Sclerosis and opted to begin treatment and was to start on Plegridy. As I started the full doses I started breaking out into hives. The docs didn’t seem to think I should worry, so I called the drug manufacturer and they said it should be considered an allergic reaction to the Plegridy, and to discontinue using it and advise my doctor.
After this experience, I switched care back to the first hospital for neurology to get a second opinion. The new neurologist ordered a new brain MRI and one of my cervical spine. There were no changes to my brain MRI, but my cervical imaging showed a syrinx. They weren’t sure if the syrinx was of any significance. So, she referred me to the only MS specialist in North Dakota whom I would meet with, in May. The MS specialist took a complete history on me and ran a bunch of blood work to rule out other illnesses. When those illnesses were all ruled out, she diagnosed me with Radiologic Isolated Syndrome (which means that they saw similar characteristics to MS in my imaging, without MS symptoms). While in her care I continued to get worse, with symptoms progressed to include pins and needles feeling in my hands and feet, occipital headaches that drop me to the ground, cognitive decline, fatigue, weakness, some random numbness, and muscle spasms. She ordered a new MRI and once again no changes were indicated. She began to question if my Chiari was behind my growing number of symptoms. She tried to refer me to Mayo, but my insurance declined her referral.
Eventually, I started having issues walking and my gait was becoming increasingly unsteady, so I return to a local neurology clinic. They did an MRI on my brain, cervical and thoracic spine. They found a syrinx in my thoracic spine and once again they doubted the significance, along with a slight scoliosis convex. When asked what a syrinx was, they told me that it was “an old MS lesion.” I later learned that a syrinx is a cyst inside of the spinal cord caused by a blockage of cerebrospinal fluid and it damages the spinal cord from the inside out – often associated with Chiari Malformation.
I made an appointment with yet another neurologist. I met with him on March 2019 and he immediately pulled my MS diagnosis. He instead decides that I have migraines and anxiety. He believes that anxiety is why I am completely numb all over my body. He disregards the Chiari and the syrinxes when asked about them stating that they do not cause any symptoms that aren’t of any significance. I left this appointment more frustrated than I was before and began losing hope that I was ever going to be able to figure out what was going on with me. How am I ever going to get the proper treatment when I am consistently blown off whenever I ask about a condition that was noted from day one?
I began working more closely with my PCP. I went over the last three years of my medical journey with her and told her that I felt that we really needed to dig into this Chiari Malformation that has been called out in my imaging since July of 2015, especially since I had many symptoms that may be from it. I told her about a neurosurgeon that I had been told about in Sioux Falls, SD, who specializes in Chiari. We also talk about a connective tissue disorder known as Ehlers-Danlos Syndrome and start comparing my symptoms (of which I had several). My PCP sends in referrals to the neurosurgeon, a genetic counselor, and a rheumatologist. (Because with Chiari you will more than likely have several comorbidities.)
In June we traveled down to the specialist. He went over my MRI images and stated that my herniation was 19mm (which was almost quadruple the amount that they get concerned about). That coupled with my symptoms led to discussing the need for me to have decompression surgery. Finally, after four years we know the true culprit of what was wrong with me, my brain is literally falling out of my skull. We leave with a bunch of literature for the surgery and I call his office back Friday and tell them my decision to go forward with the surgery and we started planning for me to have surgery in early September. Just as we thought everything was on the right course, my insurance drops a bombshell on me. I received a call from the specialist office, and they tell me that my insurance has declined my surgery stating that I can have it done locally by the same incompetent neurosurgeon that I met who couldn’t even measure my Chiari correctly. I have appealed this decision twice and both times I was denied. I am now pushing for a State Fair Hearing.
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