It was the first school event I missed because of my illness, Muffins with Moms, an annual tradition that I’d been going to since my 4th and 6th grade boys, at the time, were in pre-school. My symptoms had gotten so bad and so unpredictable that I couldn’t risk showing up to my kids’ school unstable. I made it up to them that day with an elaborate breakfast buffet that was filled with not only muffins, but donuts, scones, turkey bacon, eggs, and fruit. We were all happy that morning, although there weren’t always happy mornings…
The pain began in September of 2019, just a few months shy of the Covid-19 outbreak. I began getting headaches after launching my podcast, Time Out with Tinseltown Mom. I dismissed the ache, which felt like tension, to not getting enough sleep prior to my podcast unveiling. I was working a demanding corporate job, while hustling late into the night to get my podcast underway, plus I was getting up early every morning for a week, so I figured my body needed much-needed sleep to get back on track.
Well, after a week of getting what I thought was, “much-needed sleep” I was still having headaches, so I went through the proverbial channels by first seeing my primary doctor, then a neurologist. The neurologist examined me and by all accounts I looked good. Sometimes it takes time for headaches to go away, especially during stressful seasons of life. That philosophy sounded reasonable, so I went home and endured recurrent daily pain for several more weeks. When my left ear became muffled, I saw an Ear Nose Throat doctor, but nothing pointed to my headaches. I eventually had an MRI, which showed nothing wrong. My neurologist and I continued this song and dance for a couple of months until my headaches started getting worse, and positional, as the pain moved to the back of my head.
As moms, sometimes worrying thoughts pop up. “What if I have a brain tumor?” was actual contemplation. My boys were 9 and 11 at the time so the idea of leaving them without a mom terrified me. I had to trust God and quickly get a hold of those negative fears, so I strove to disallow worry from stealing precious moments from my life. That same day, the pain worsened at the back of my head, until one day I laid flat on my back, and the pain almost instantly disappeared. I laid there and found relief for a while, then got back up, and the head pain gradually came back. Again, I laid flat, and the pain disappeared. It was like a pulling tension that painfully weighed my head down the longer I stood up, leaving me no choice but to lay flat to find relief.
My symptoms sounded very familiar to headaches my sister experienced 10 years prior so I conferred with her, and she said I might have what she suffered from, a cerebrospinal fluid (CSF) leak. A CSF leak is normally caused by a leak or tear in the thick membrane of the spine (the dura) and results in loss of CSF volume that bathes the brain and spinal cord. I took this info to my neurologist and was given an MRI specifically for a CSF leak and the tests came back that it appeared a leak was present, but I’d have to be referred to a neurosurgeon to confirm and continue treatment. I remember my sister told me that after years of being misdiagnosed, then delayed with her diagnosis, she reached out to world-renowned neurosurgeon, Dr. Wouter Schievink, at Cedars-Sinai Medical Center who specialized in CSF leaks. He looked at her records and told her he saw something “suspicious” at the T9 level. She took that info back to her doctor; they retested her and found her leak. I shared that info with my neurologist and when he asked if I wanted to be treated by a neurosurgeon at my current facility or Dr. Schievink, my answer was clear.
Some days were better than others and, for whatever reason, drinking coffee eased the pain, so I was literally medicating myself with caffeine because pain meds did nothing. The coffee would help for an hour or two, sometimes three. When it wore off I needed to lay my head back for relief. Most people didn’t know I was just smiling through the pain. Whenever I went anywhere, I loaded up on coffee and, by this time, I had to pick and choose which of my kids’ activities I could safely attend.
Eventually, I received an appointment from Dr. Schievink’s office, had an MRI with contrast and received verification that I had a “spontaneous” spinal fluid leak. My brain scans also showed that I had brain sagging, which happens when the pressure of the fluid is too low, causing the brain to sag downward when upright, resulting in severe back-of-the-head pain. The recommendation was to have an epidural blood patch, a surgical procedure in which a small volume of my blood is injected into the space surrounding my spinal cord. The blood travels along the spinal column, starts to clot, then seals the leak. The soonest appointment was a month out and because I was at the peak of my pain journey, I spent half of the time laying on my back and still doing my wifely, motherly and workly duties. Eventually, I had to go on work disability because it just wasn’t practical, and the pain was becoming too intense, plus coffee wasn’t helping like before.
In February of 2020, at the beginning stages of the US COVID outbreak, I had an epidural blood patch. Since COVID was still in its infancy, I was able to have family stay with me at the hospital for the all-day procedure and recovery. When I was released, the doctor’s orders for a month were no bending, stretching too far, sudden moves, straining, or lifting anything over 10-15 pounds. Thankfully, I didn’t have any toddlers in the house, as I couldn’t imagine not holding them, but I adhered to the doctor’s orders while my family supported me.
The next day, after the procedure, I began experiencing high pressure symptoms, which were worse than the low-pressure headaches. I went from having low-pressure headaches, where I needed to lie down for relief, to high-pressure headaches where lying flat for too long was painful, and when I first stood up, the pain in my head was so powerful that it built to an unbearable crescendo. The first week after my procedure I had to literally sleep sitting up. The high-pressure pain subsided after two weeks. A month later, my brain MRI came back normal, no more brain sagging, however the leak was still present.
I remember the last school event I went to, a musical my oldest son’s class put on. COVID numbers were beginning to increase and even though I still had my leak I was there. All the parents and staff were asking how I was and it was really hard to answer them. I was feeling better, but not yet healed. That would be the last time we’d be at that school. That same day, we had to pack up all my kids’ belongings and begin their remote-school journey. Sadly, because of Covid-19 this small private school couldn’t sustain itself and closed their doors for good at the end of May in 2020. It was bittersweet, my kids had been a part of that school since they were babies and built lifelong friendships, but I was excited for them to experience a bigger school, meet new people and enjoy fresh adventures. The silver lining was that I didn’t have to drive back and forth to school and could continue recovering at home.
In June of 2020, I had a different procedure, a Fibrin Glue injection. This required application of a special glue through an epidural injection to the source of the leak. The glue is intended to create a long-lasting seal. Because COVID numbers were rising, visitors were not allowed at the hospital. Thankfully, all the doctors and nurses made my stay and experience enjoyable. I left with the same month-long protocal as before, no lifting, bending, stretching too far, etc. Again, the next day, after the Fibrin Glue patch I experienced high-pressure symptoms but not as bad as the first time around.
A month later, I had another MRI to see if the leak was gone, but it was still there. I wasn’t surprised since I was still having similar symptoms.
In October of 2020, I had another Fibrin Glue injection, but a day before the procedure I was given a myelogram to determine concretely where the leak was coming from, and specifically where they would inject the glue. They knew the area of the leak, but this was more precise.
The following month, I had another MRI and to my disappointment, the leak was still present. I had 3 procedures in less than a year and it seemed like nothing was working. At this point, Dr. Schievink had recommended surgery.
In December of 2020, I had an invasive surgery to seal this persistent leak. My husband and kids dropped me off at Cedar-Sinai Medical Center in LA for a 3-day hospital stay. COVID numbers were at an all-time high, so I was going to be in the hospital alone, which, honestly, I was getting used to. Dr. Schievink, installed 3 titanium clips in my spine in hopes of sealing the leak, the same procedure used for aneurism patients. Three days later, my husband and kids picked me up from the hospital and again, I had to take it easy for a month with the same directive of no lifting, bending, sudden moves, etc.
As a wife and mom, dealing with a chronic health issue during a global pandemic has been challenging, but I can honestly say that throughout, I remained grateful: grateful that the doctors were able to quickly identify my leak (some people suffer, like my sister, for years without their leak being found); grateful that eventually, my symptoms were better than when first diagnosed; grateful that, although CA had the highest COVID numbers at the time, through all my trips to the doctors’ offices and stays at the hospital I never caught it; grateful that I received treatment from the best doctor in his field; grateful that my husband took the “sickness and health” vows seriously and remained steadfast and supportive throughout; grateful that my kids’ faith have grown tremendously as they devotedly prayed for my healing.
In February of 2021, one year from my first procedure, my latest MRI and doctor’s report showed no signs of the CSF leak. This has been a long, hard fraught, journey, and I still remain grateful. I still remain thankful.
Nakhoal Williams says
Tirralan, my sister, what a beautiful testimony of God’s faithfulness! I’m so grateful and thankful you are healed!
Your story is an encouragement to others that there is hope for this condition and encouragement to me as well as I am still on this “spinal fluid leak” journey!
Robin K says
Tirralan, this is so encouraging for anyone going through a medical trial. As one who has had two brain surgeries within a five year span to remove two tumors, I celebrate God’s glory with you! I am so glad that He guided your steps to your team at Cedars. Blessings to you and your family.