Transcript
Good afternoon, everyone. I’m deeply honored to be here today, upright and in person with you all. 2019 was a pretty significant month for a couple of reasons. One, I think, was pretty significant because it was the last summer we all got to experience without dealing with COVID. But then, also on a personal level, it was the last month I was able to be carefree and worry-free in my own body.
August of 2019 was supposed to be an exciting month. Mid-month, I was supposed to start my Pilates teacher training, and then later on that month, I was supposed to be in New Orleans celebrating my little sister’s birthday with my family and friends, enjoying a well-made Sazerac and delicious beignets. However, my dura had other exciting plans for me.
On the 5th of August – it was a Monday, like any other Monday. I went to work at the yoga studio I was managing at the time, and I rounded out my day by going to the gym. Later that evening, I noticed I had a sensation in my back, which felt similar to the type of feeling you get when you need to crack your back. I figured I might have done a little bit too much at the gym. So, I decided I’d go home, take a hot shower, and I would be well by the next morning.
The next morning came, and I felt pretty normal, but I also still had that really annoying middle back pain. Because I worked at the yoga studio at the time, I reached out to my boss and asked her if she could do some stretching for me. So, she had me do child’s pose and gently stretch my back just to see if that would provide me any relief. Later that evening, my trap muscle started to ache. Thinking that maybe it had come from the workout the day before, I decided it would probably feel good to do some foam rolling.
As I was heading home for the day, I felt an onset of a headache. And later, by the time I got home, the headache became so intense that I had to hold my head up by my hands. Confused though at what these symptoms meant, I went to bed, thinking once again tomorrow would be a better day. The next morning came. I woke up, and I noticed that the migraine I was feeling was still there. By this point, I was convinced I had some sort of misalignment in my spine or neck. And don’t judge me, but I thought, “I need to go to the chiropractor.”
Once I arrived at the chiropractor’s office, they had me lie down so they could do their initial assessment. As I was lying on the table, I did notice that the pain went away, but I didn’t really think anything too much about it at the time. As I was lying on the table, the chiro gave me a TENS unit and said that with some stretches, I would feel good in no time.
After I left the appointment, I was even more confused because I was still in pain, and I left the appointment with no answers. I did, in that moment, what anyone would do when they were confused and didn’t know what to do next – I went to go eat.
As I was sitting at the table, trying to enjoy my samosas and my chicken tikka masala, my head began to feel so heavy and painful that all I could do was lay down on the table. By this point, I was starting to feel like this had to be something bigger than a migraine and that I needed to get to the bottom of it immediately.
Thankfully, right across the street was urgent care. So I made an appointment, feeling hopeful that there would be my relief. I got to urgent care, and the doctor called me back and asked me about my activities prior to that day. I told him that I did some semi-heavy lifting, but nothing too crazy. He listened and nodded intently and then said, “Miss Gibson, you have a neck strain. I’ll give you some NSAIDs. You take those for a few days, and you should be fine after that.”
By this point, I explained that not only was my neck hurting, but that the top of my head was also feeling super tight, and it was feeling as if it was being pulled down the back of my neck. He explained, though, that that was nothing more than inflamed muscles and that, again, with time, it would feel better.
The next day came, and I was indeed not feeling better. If anything, I was feeling a lot worse. But I had to go to work, so I pushed through, ultimately having to leave because I just couldn’t stand the pain anymore. When I woke up on Friday – that was the fourth day of pain – I noticed that my ears felt muffled, as if I had water in them.
My PCP called in an MRI to get imaging done on my head and spine at the time. Thankfully, before the day ended, I was able to get those results. On the way home, I was reading through my report and noticed that every section essentially summed up with being unremarkable, except for one little piece of info at the end of the summary that said “possible cerebrospinal fluid leak.”
By the time I got home, my PCP frantically called me and said that I needed to get to the ER because she consulted with a neurosurgeon at the time, and based on my MRI, it looked like I had a hematoma along my spine and that I needed immediate attention. By this point, though, my interest had been piqued, so I went to Google to see what a cerebrospinal fluid leak was. To my shock and dismay, the initial symptoms that popped up were exactly what I was experiencing.
When I was finally brought to the back of the ER, I was told I was going to have another MRI as well as a CT scan to ensure that nothing serious was happening. After all of the exams came back, the ER doctor came to speak to me and my parents to explain his findings. After he concluded that everything checked out fine and that I had an unfortunate neck strain, I brought up what I saw in my last report and went down the symptoms list with him. He was adamant, though, that that wasn’t the case and that, with time and physical therapy, I’d be back to normal.
The following week, I had a follow-up with the neurosurgeon who initially looked at my MRI. We went over the findings from the ER visit, and once again, I brought up the possibility of a CSF leak. He then pulled up the imaging and went along my spine, showing me that the only thing he saw was a collection of fluid, which he assumed was blood on impact, even though I had no real impact to my back. He wrote me an order for physical therapy and told me that I needed to start rehab on my neck and that eventually I would be back to my baseline.
My mom and I immediately went to the PT’s office. As he walked me through the treatment plan, before we left, he decided it would make sense to go through a session before I left. And I must say, that was some of the most excruciating pain I’ve ever felt in my life. Every bend of my neck and every spinal flossing exercise, I felt tears streaming down my face because it was in that moment that I realized no one was listening to me.
I left that appointment feeling defeated, dejected, and a bit hopeless. Even though that was my first time ever being in that position, I had heard of several people before – women, Black people, Black women, those with medical mysteries – being left behind with confused or apathetic providers, leaving them with their own devices or, even worse, giving them a thoughtless prescription or a diagnosis that didn’t lead them any closer to successful treatment or healing.
After I sat with my feelings of doom, I knew I had to learn what I could to better advocate for myself because I made the decision not to give up. Later that day, I decided to do what any 21st-century modern patient would do – I went to Instagram. I went to the search bar and typed in #spinalfluidleak and #CSFleak to see if there were others who might have been going through the same thing that I was. Thankfully, after connecting with a few people who, by that point, were either sealed or functionally leaking, I was led to the Facebook group dedicated to other CSF patients. I was able to be directed to a neurologist who was quite knowledgeable about CSF leaks, but he was about two and a half hours away from me at the time. By the time I had an appointment with him, he was able to confirm that I did indeed have a CSF leak. Which was great, but he said he didn’t recommend anyone in the local area to treat me and that instead, I would have to do some traveling for real treatment.
Knowing what I needed to do, my mom and I started the journey of making sure I had all of my documents and imaging done and in accordance with the requests of the hospitals. By this point, I was in pretty bad shape. I wasn’t upright often. My brain stem felt like it was being dragged down my spine daily. I had worsened brain fog, neck pain, and a burning sensation along the side of my waist. I was losing weight, I had terrible tinnitus, and I was becoming petrified at night to go to sleep, fearing that I wouldn’t wake up the next morning.
As the weeks went on and imaging appointments continued to happen, my symptoms started to change from what was initially low-pressure symptoms to what many described as high-pressure symptoms. I started having intense pressure in my head that made it feel like I was in a constant headstand. Sometimes it would get so bad that I would throw up from the intensity of the pain, and I couldn’t lay down flat anymore, so I had to purchase a wedge pillow to get a fraction of relief. The brain fog and the back pain were still present, but I initially thought that maybe, maybe there was some miraculous self-healing going on.
Unfortunately, during one of the MRVs I had to have done, it was spotted that I had a cerebral venous sinus thrombus, or CVST, extending down into my jugular vein, and it was more than likely the cause of my symptom changes. Thankfully though, not too long after it was discovered, we received confirmation that my imaging did prove that I had a leak.
Prior to my procedure on October 24, 2019, I had a CT myelogram performed, which was done to help find the source of my leak. Fortunately, my leak was found. It was at the T2 – T3 junction, and it was more than likely caused by a very small bone spur. Imaging confirmed that the collection of fluid that we were initially told was a hematoma was, in fact, a collection of cerebrospinal fluid. As the doctor was explaining this to me, I burst into tears because it was in that moment that I realized my journey of doubt and confusion was now inching closer toward sound treatment and healing. The doctor who read my imaging, however, did note that since my leak was a ventral one, caused by a bone spur, eventually I would need surgery, but we decided to go through the non-invasive process first.
I’m happy to stand here today and say that I’m five years post-seal – or, yeah, five years post-seal. Looking back over my journey, I acknowledge that my situation was not as difficult as others’. However, the beginning of my story had so many bouts of either full-on gaslighting or dismissals of what I was experiencing. I would like to acknowledge also that being born a woman in this generation has been a blessing, as well as being a Black woman in this generation has been an even bigger blessing, especially given the history of my ancestors. However, disparities – health disparities in particular – still exist, and understanding how they manifest is important for us as patients but is also incredibly important to our providers.
According to the Kaiser Family Foundation survey on racism, discrimination, and health, one in five Black adults reported being treated unfairly by their medical professionals. Throw in also being a woman and having an invisible illness – the intersections of those lived experiences and identities can further complicate adequate care for deserving patients. I’m fortunate to have had the strength to do my research and the stubbornness to not take an uninformed answer as fact. And, of course, having an incredible support system was tantamount as well.
For me, learning all that I could about CSF leaks from peers suffering through this debilitating condition helped me navigate the questions, imaging, and also the gaslighting that comes with this journey. Understanding the medical language of what I was experiencing helped me advocate for myself in ways I’m not sure I would have had I not done the research on my own.
In closing, collaborating and creating a partnership in the diagnosis and treatment of this condition will only reap positive benefits for all of us. My hope is that further research and education continue to go towards this condition so that others are suffering less and regaining their lives quicker instead. Thank you.
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