Revival - Concussion, not-Hernia, and CSF Leaks

Since I last wrote a blog post, the world feels as though it has gone into a total meltdown. COVID-19 continues to rage around the globe, even as the first batch of vaccines is rolled out to healthcare workers on the front lines. Party tensions run high in the US government and trickle down to the public daily. Global climate change brought another year of extreme storms and draughts across the world. And inequality continues to rage through even the reportedly "civilized" corners of the world.

Meanwhile, I have gone into a physical meltdown. Family and my therapist maintain that I have not been the same since I sustained a concussion at work in November 2019. This was my third concussion, and I was out of work recovering for 6 months. I finally returned to work in May 2020 during the chaos of a global pandemic and spent 1 month treating through telehealth followed by another 3 months treating a full caseload primarily in person wearing full personal protective equipment. 

The first month back to treating my patients in person, I developed mysterious severe abdominal pain with a bulge that my doctors and I believed to be a hernia. Unexpectedly, an ultrasound did not show a hernia. The radiologist suggested it presented as a nerve impingement syndrome, and weeks later I returned to him for an abdominal nerve block. After my pain did not seem to change, my pelvic physical therapist and I agreed it was something else. Rather, the most likely explanation for those months of sharp abdominal pain is an abdominal ligament that has stretched out to double its original length, as observed during my ultrasound.

In July, my fatigue increased and my previously controlled dysautonomia went off the rails. We attributed it to the stress of my caseload, my ongoing abdominal pain, buying a house and moving into it, and my heat intolerance during the hot summer months. My dysautonomia specialist's new medication he added made no difference, and I was nearly passing out at work at least weekly. 

By late August, my cognitive function declined. I had difficulty with word finding, frequently switching words or unable to come up with any word at all. My brain began going blank, and I noticed it beginning to affect my patient care. My concentration failed me, and my brain fog made me feel like I was wading through feet of mud when I tried to converse with anyone. My fatigue throughout the day was completely uncontrollable, no matter how much sleep I managed. I was getting dizzy daily, and frequently losing balance backwards even with my eyes open. My memory began lapsing, to the point that I forgot my own birthday.

By this point I was extremely alarmed. The only time I felt like I could mentally function was when I was laying down. I visited my neurologist, who ordered imaging. By this point I was laying down flat at work at every opportunity I could. If I was not with a patient, I was dragging my laptop around looking for an empty room with a mat to lay down in while I wrote my patient documentation. Driving became terrifying, and I had to have friends and family talk to me on the phone to keep me alert on my daily commute. The effort of getting through my day often left me in tears by the time I got home.

With the help of friends in my chronic illness circle, a friend currently in fellowship at a headache clinic, and my incredible neurologist, we determined that I was likely experiencing a spontaneous spinal cerebrospinal fluid leak (CSF leak). The brain and spinal cord are encased in a connective tissue sac called the dura. Cerebrospinal fluid (CSF) is the liquid in which the brain and spinal cord are suspended to prevent inappropriate pressure, and fills the dura around the brain and spinal cord. In a spinal CSF leak, there is a tear in the dura that allows CSF to leave the central nervous system, causing decreased fluid pressure surrounding the brain. This is called spontaneous intracranial hypotension (SIH), and is medically  used synonymously with a spontaneous spinal CSF leak. The change in fluid pressure in the brain causes the brain to sag in the cranium, and leads to various symptoms of neurological dysfunction. 

CSF leaks most commonly occur as a direct result of a procedure involving a lumbar puncture, but are known to occur spontaneously on rare occasion, particularly in individuals with hereditary connective tissue disorders, such as my ever-companion EDS. The hallmark sign is typically a positional headache that is present when upright but improves when laying down, and all of the other neurological symptoms follow a similar positional pattern.

By the time I went to the Emergency Department on Labor Day, I knew I was leaking but was desperate for help. My upright tolerance had decreased to no more than 20 minutes upright a couple times a day. I spent the month being shuttled back and forth between my regular neurologist, an interventional pain neurologist, and more MRIs of my brain and full spine, in an attempt to locate the leak. By the end of September I was no longer capable of complex thought, even when laying down, and my upright tolerance had dwindled to 5-10 minutes.

At the end of September, my neurologist performed a blind epidural blood patch. This is the first line of treatment for a CSF leak. During an epidural blood patch, the doctor removes blood from the patient and injects it directly into the epidural space, which is the space in the spinal canal directly outside the dura. "Blind," in this case, refers to not knowing where the leak is and thereby performing the procedure in a random, low-risk location (usually the upper lumbar spine). The idea of an epidural blood patch is that the blood causes an inflammatory response in the dura and creates a scab over the leak to plug it. Regardless of whether or not it achieves the plug, there is typically an increase in intracranial pressure as a result of the increased volume surrounding the dura, as well as potentially through temporary tightening of the dura tissue as part of the inflammatory response.

When I walked out of my first blood patch, my balance was noticeably improved. After following the recommendation for a few days of bed rest, I slowly began increasing my upright tolerance. I made it to 4-5 hours upright at a time, before I began declining once more.

At the end of October, my neurologist once again stayed late at his office to perform a second blind epidural blood patch, this time with a higher volume of blood. This time I had 3 full weeks of relief before the sinking feeling of neurological decline hit me again. By this point I had gotten in with a local CSF leak specialist, who referred me to an interventional neuro-radiologist.

In the beginning of December 2020, I went in for a CT myelogram with the interventional neuro-radiologist. This test involves a lumbar puncture to inject contrast dye into the dura in order to better visualize any potential leak sites. A week later, I learned that the doctor had located 4 leaks in my dura. The leaks included cervical, thoracic, and lumbar locations. Though the CSF leak specialist had already informed me she suspected multiple leaks due to my history and connective tissue disorder (EDS), I was shocked. My inability to function upright over the previous few months finally made sense, but the incidence of multiple leaks meant I would always be on the lookout for leaks, even after healing from the current 4.

On December 17, 2020, I went in for my first targeted blood patch, in which the doctor uses imaging during the procedure to target specific locations along the dura. After a long day in the hospital including severe dehydration and a blown vein, I laid on my belly in a CT machine while the interventional neuro-radiologist performed all 4 blood patches over the course of an hour. By the time he removed the needles I was experiencing presyncope, in which my body is preparing to pass out, but after a few minutes of hyperventilation and a cold sweat, face down in the CT machine, I was done. 

At this point, I am slowly, carefully, gradually trying to build back my upright tolerance. I am not permitted to bend, lift, twist, or strain for the next few months, and exercise is high on the list of things I am not supposed to do in order to protect my dura while I recover. Exercise is an integral part of my regular treatment for both my dysautonomia and my pain due to my hypermobile joints, and I have a long road of recovery and physical rehabilitation ahead of me.

We hope the targeted blood patch will hold, but in many cases people require repeated targeted blood patches before healing. My health and career future has a lot of question marks right now, but I am taking it day by day, putting one foot in front of the other, and doing everything I can to allow my body to heal.