Transcript
On August 4th, 2013, I woke up to my body in total chaos – a crippling headache, vertigo, ringing ears, and uncontrollable vomiting. It was terrifying to feel my body go completely haywire, as if it had turned against me overnight. I could not comprehend what was happening.
At Urgent Care, I was told it was benign positional vertigo and that the Epley maneuver should fix it. It did not fix it. So I went to another doctor, who told me it was an ear infection. A month later, I was feeling even worse, so I went to the ER, where they gave me Benadryl, took my blood, and sent me home.
I then saw an ENT who referred me to a neurologist, but I couldn’t see him for another four months. During that time, I found an article on Wikipedia about CSF leaks. I was so excited to finally have a possible explanation for why my symptoms were worse when I was upright. I eagerly awaited my neurologist appointment, convinced I fit the criteria for a leak.
My symptoms hit me within milliseconds of being upright – there was no doubt in my mind that a leak accounted for these positional symptoms. I thought that once I explained this to the doctor, I’d be on my way to treatment. This was far from reality. I would leak for three and a half years before receiving treatment.
During those years, I was treated for chronic migraines and cycled through 18 medications for headaches and nausea. Each appointment followed the same script – I’d say the meds didn’t help, I’d reiterate the positional nature of the symptoms, suggest it might be a leak, get dismissed, and receive more migraine meds. I eventually saw a new doctor who believed me and finally furthered the diagnostic process. Although my subsequent brain and spine MRI showed nothing, a lumbar puncture revealed an opening pressure of 5 cm of water, which was enough to convince doctors to proceed with an epidural blood patch.
My first five blood patches were done at my local hospital. I had improvement, but without proper aftercare, they only lasted days or weeks. Eventually, I found a specialized leak center through a Facebook support group, and that changed everything. Over the next four years, I had two CT myelograms, which didn’t show a leak, but I received five successful fibrin blood patches. The most recent one has held for three years.
After every patch, I experienced rebound intracranial hypertension, leaving me in high pressure for the majority of the last seven years, but it’s finally beginning to stabilize. That’s just a brief overview of my story. Now I’ll cover the difficult emotions I faced and the antidotes that helped. My aim is to show that, while leaks bring inevitable suffering, we can try to reduce it by focusing on what we can control.
Depression: A recent quality of life study conducted by Dr. Friedman and others found that 78% of leak patients reported depression, 64% had suicidal ideation, 15% had a specific plan in mind, and 24% had suicidal behaviors previously. A significant factor is the delay in diagnosis, with patients waiting an average of two years. While these findings are undoubtedly grim, there is cause for hope. Dr. Friedman’s study showed that patients who received successful treatment had mental health outcomes comparable to the general population. Another study done by Dr. Carroll, Dr. Beck, and others confirmed these findings. After six months post-surgery, patients’ health scores nearly doubled, and depression and anxiety rates dropped significantly. Proper treatment can relieve the emotional burdens of a leak, offering real hope for recovery.
Even after 11 years, I still find it difficult to describe what living with a CSF leak is like. It is so wildly consuming. 24 hours a day, I had an excruciating headache, sinus issues, and nausea. Then I had fluctuating symptoms like vertigo, fatigue, facial numbness, sound and light sensitivity, cognitive issues, and double vision. Leaks are often dismissed as “just a headache” when, in reality, they’re a full-body syndrome. Living with a leak is relentless – a constant fight against gravity that no medication can fix. The bed becomes both sanctuary and prison, where you eat, work, maintain relationships, and celebrate birthdays and holidays. It becomes your world, blurring the line between night and day.
You can’t just “Netflix and chill” all day because the noise and lights that once provided distraction now intensify your symptoms. When those escapes aren’t possible, you’re left alone with your thoughts, which can spiral into deep depression and hopelessness. Three years into my journey, depression overwhelmed me. I self-isolated, withdrew from family and friends, and relied heavily on my dogs, Saxby and Cosette, for emotional support. After yet another failed doctor’s appointment, I felt utterly defeated and ready to give up. I began putting my affairs in order, drafting goodbye letters, and planning my exit.
The night I intended to end my life, my dog Cosette locked eyes with me, and I realized that my loved ones might eventually cope with my absence, but losing me would shatter her in a way she would never recover from. Saxby and Cosette’s love gave me the strength to keep going.
After that night, I realized how important it is to have something to care for. Depression traps you in inward focus, but caring for something forces you to look outward, grounding you. Whether it’s a pet, a child, or even a plant, having something to care for reminds you that your presence matters, offering purpose and connection in dark moments.
Finding joy in small moments became my antidote to depression. I discovered a particular passion in creating elaborate Christmas cards. During my second year of the leak, I was especially depressed with the holidays, so I photoshopped an alternate reality where I was married to Jon Stewart. After meeting my husband, who is not actually Jon Stewart, the tradition really took off. Each Christmas, we come up with a theme and an associated project. We’ve made books, albums, a fake MLM, and an app. This process has become my way of coping. If I need a distraction, I come up with a creative project to escape in.
For example, I was anxious in the weeks leading up to one of my blood patches, so I made a 78-page “CSF Leekly” magazine. Sometimes I feel guilty about this time spent – hundreds of hours for something with no external payoff. But my husband often reminds me of a Bertrand Russell quote: “The time you enjoy wasting is not wasted time.” I sometimes grieve the experiences I missed over the last decade. Those are moments I’ll never get back. Lying in bed often feels like you’re wasting away and life is moving on without you. But when I reflect on this quote, I see countless pockets of joy where I truly enjoyed life, even from bed. Those moments were not wasted at all.
There are a few other ways I found to help fight my depression. I don’t have time to go into detail, but wanted to include them briefly. Always have something to look forward to, celebrate the little wins, staying connected with others, daily gratitude, journal, Yoga Nidra, morning sunlight, talk therapy, and books on mindfulness, illness memoirs, or self-help.
Losing control: Ellen Linger and Judith Roden studied how a sense of control impacts well-being in nursing homes. They allowed half their residents to make small choices, such as arranging their own furniture, deciding when to join activities, and caring for a plant, while the other half had these tasks managed by staff. After 18 months, the group with more autonomy was healthier, more active, and had a 50% lower mortality rate, showing that even small decisions can significantly improve quality of life and longevity.
One simple yet powerful way to regain a sense of control is by establishing routines. When life feels dictated by your condition, adding structure can be an anchor amidst the chaos. Establishing a dedicated routine gives a sense of purpose to the day – even if it’s something small. It helps you reclaim control when so much feels uncontrollable. That said, it’s important to show yourself grace. There will be days when even the smallest routine is overwhelming, and that’s okay. What’s key is having a gentle framework to return to when you’re able.
This is where Spoon Theory, a concept created by Christine Miserandino, can be helpful. It uses spoons as a metaphor for units of energy, with each task costing a certain number of spoons. To have a really good day, I might need 12 spoons. But on some days, I only have four – and once they’re used up, they’re gone. What I appreciate about Spoon Theory is that it removes the emotional weight from managing your energy. Instead of feeling guilty for not doing everything, you recognize that your energy is finite. Running out of spoons is not a reflection of your worth – it’s just the reality of living with limited energy. This mindset allows us to set realistic expectations without feeling pressure to push through exhaustion. This concept also encourages mindfulness in how I spend my spoons. With only a few spoons to get through the day, I’ve learned to prioritize what truly matters and avoid wasting spoons on things that don’t.
While you may not be able to control the need to stay in bed, you can influence how your space feels and functions. Making it more accessible can reduce physical strain and mental stress. I highly recommend Jodi Ettenberg’s talk and blog post for great insights on creating a leak-friendly environment.
Self-doubt: As a teenager, I was diagnosed with bipolar 2 disorder, ADHD, depression, GAD, and social phobia. These labels became ingrained in my sense of self from an early age. I’ve started to question the accuracy of these diagnoses, but growing up, I simply accepted that this is who I am, and I believed I was destined to be broken. This mindset carried into my CSF leak journey. An early provider suggested the term “psychosomatic,” and I became fixated on it. I wondered if my brain could create symptoms that felt real. I questioned my motives, wondering if I was subconsciously sabotaging myself and clinging to the identity of a sick person. Having an invisible illness is unbelievably maddening. I have found myself envious of other conditions with a clear cause. Someone with a broken leg doesn’t have an existential crisis questioning why it’s painful to walk, but this condition has no visible culprit.
Living for years without any evidence, it felt like the only logical explanation, leaving me with no choice but to turn the blame inward. That’s where the real damage began, because once you start to believe you are the problem, it erodes you from the inside out. I denied myself any compassion for my suffering, convinced that I deserved it because I was the one causing it. After a year of seeing my neurologist, I got him to agree to do another brain MRI to search for signs of a leak. I was thrilled, knowing this was the first step towards diagnosis. However, the radiology team rejected his request, saying I could not have a spinal CSF leak if I didn’t have nasal drainage. I knew this was false, but I resigned myself because I lacked the confidence to push back. This is just one example where self-doubt delayed my diagnosis because I was not my best advocate. While I was leaking, I didn’t trust my inner voice. That has been a part of my healing. My therapist often reminds me, “You are the expert on you.” There may be no clear evidence for what you’re feeling, but it’s crucial to develop confidence in your inner voice. Don’t let anyone undermine your experience. Trust yourself – your body is trying to tell you something important.
Trusting yourself is hard, especially when your inner voice is your harshest critic. Self-doubt brings unrealistic standards and self-judgment. This is where self-compassion comes in. It helps me to practice the Reverse Golden Rule – treating yourself as you would a loved one. Imagining what I’d say to a close friend in the same situation allows me to offer myself the grace, patience, and love I’d give to them. I’ve often been unkind to myself during recovery, feeling like I have no excuse not to accomplish tasks. Learning that IIH is often called “pseudotumor cerebri” because its symptoms mimic a brain tumor shifted my perspective. I wouldn’t judge someone with a tumor for struggling with the same cognitive issues that I do. Similarly, reframing a CSF leak as a spinal injury can serve as a reminder to offer the same tenderness we would extend to someone with a visible injury.
Meditation has been one of the most effective ways I’ve found to practice self-compassion. While preparing for this talk, I became paralyzed with self-criticism. That’s when I found fellow leaker, Beth Gibney, who hosts weekly meditation classes over Zoom. Nothing has brought me the self-acceptance and peace I’ve felt in her sessions. As a fellow leaker, Beth understands chronic pain, and her sessions foster a sense of connection and healing. Doing it from home is convenient, and the collective energy from the group makes the healing even more profound. You can visit her website at anchoredlife dot com.
Anger: Anger is a complex emotion. We have every right to feel anger towards our bodies, the medical system that fails us, and loved ones that distance themselves. But there’s a paradox: while this anger is valid, holding onto it can prevent us from moving forward and seeking the help we deserve. I hadn’t felt truly heard by any doctor during the diagnostic process, which led to deep resentment towards the entire medical profession. Instead of seeing that this neurologist just wasn’t the right fit and moving on, I assumed all providers would treat me the same, so it just seemed like I’d be wasting my time starting over with someone who also didn’t believe me. My cynicism blinded me to the existence of compassionate and competent doctors. Eventually, I opened up and did find a new provider who believed in my leak. I could have been diagnosed years earlier if I hadn’t let my anger stop me from seeking better care.
It wasn’t until recently that I realized the antidote to my anger was acceptance – a revelation that brought relief I wish I’d found sooner. As Michael J. Fox said, “My happiness grows in direct proportion to my acceptance and in inverse proportion to my expectations.” Acceptance doesn’t mean condoning what happened or dismissing our pain – it means recognizing what’s out of our control. By accepting reality, we free ourselves to seek solutions instead of staying trapped in frustration. Acceptance leads to healing and progress, while anger keeps us stuck. It helps us focus on what we can change instead of what we can’t.
I’ve come to accept that I spent 11 years chronically ill. I can’t say I’m glad it happened, but it did shape who I am. I’m very fortunate that my body responded well to treatment, but many patients remain stuck because modern medicine hasn’t caught up to their complex conditions. The real hope lies in advancing medical understanding and care.
So, I turn to you, the providers. Thank you so much for being here. Your presence shows a commitment to going beyond the norm and improving patient care. I believe that in order to bridge the gap between patients and doctors, we need to have honest conversations about areas where things sometimes fall short.
Over the past seven years, I’ve spoken with dozens of leak patients, and I want to try to voice their challenges to you. Unfortunately, many still face the same roadblocks that delayed my own treatment. Even though we know leaks often don’t appear on imaging, and visible signs on brain MRIs can diminish the longer the leak persists, many doctors still conclude that there can’t be a leak when scans are clear and won’t pursue further investigation.
Many patients I’ve spoken with were dismissed at leak centers, but they didn’t give up. They sought treatment elsewhere, and their leaks were eventually found and sealed. These cases show that relying on positive MRIs can lead to false conclusions. Just because a leak is not visible does not mean it’s not there. For many of us, though, the search stops before it even begins.
I’m especially passionate about this because my negative imaging was repeatedly used to dismiss the possibility of a leak, delaying my treatment for 1,272 days. I understand why doctors were skeptical. Spontaneous leaks often occur in older women, and I was only 23. I had no connective tissue disorders, accidents, surgeries, or injuries. One day, I went to work as a video game tester, came home, went to bed, and woke up with a leak. Despite seeing top neuroradiologists, nothing ever appeared on my imaging. I still have no proof that my leak ever existed, but blood patches saved me. Now I’m fully functional, ready to start a family, and moving on with my life. But countless others remain stuck trying to prove the existence of something invisible.
I want to revisit the findings from the Quality of Life study. These numbers are not just statistics; they reflect lives lived in constant, unimaginable pain. We have tragically lost members of our community to suicide, and many others are on the brink. Some states allow physician-assisted suicide for terminal patients, but many with leaks lament that they don’t qualify because their condition isn’t life-threatening. Sadly, this sentiment is all too common. You would be shocked to know how many of your patients are dangerously close to ending it all. But we don’t voice these thoughts to doctors because we fear it’ll be logged in our charts and dismissed as mental health issues. In fact, 23% of patients in this study were misdiagnosed with a psychiatric condition.
To avoid this, we put on a brave face and hold it together during appointments, meaning doctors may never fully grasp the extent of the suffering their patients endure outside the exam room. Many have reached dead ends and believe this is a life sentence. Leakers are some of the most resilient individuals you will ever meet. They have an astonishing capacity to endure, to adapt to pain, isolation, and the loss of life’s joys. But as one patient said, “I feel like I’m in a torture chamber of my own body.” No amount of mental or physical strength can equip the body to endure relentless suffering year after year.
It’d be different if patients could have confidence that they could eventually see a leak specialist, giving them hope for a cure. But paradoxically, those with the most complex cases can face the greatest barriers to even accessing that care. Despite their tenacious efforts, many are left waiting, unseen, and unheard.
I know this isn’t the outcome you want, and I recognize that you are overworked and stretched beyond capacity, already seeing as many patients as possible. I’m not here to criticize or suggest you’re not doing enough – quite the opposite. You save lives every day, and your work is remarkable. Your expertise is rare, and your skill set allows you to help where others cannot. Taking on these challenging cases can truly be the difference between life and death for these patients with nowhere else to turn. If you don’t take on these cases, no one else will. You are their only hope to get sealed.
Please embrace the challenge of these complex cases. We deeply appreciate your hard work, compassion, and dedication for giving us our lives back. Thank you so much for all you do.