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Hi, good morning everyone. I want to start out by thanking the Foundation and Dr. Callen for inviting me here to speak about my experience living with a chronic post dural puncture headache. Part of my goal here today is to share my journey – having a unique perspective as a patient as well as a practitioner – and to bring a deeper understanding of the extreme impact chronic post dural puncture headache has caused in my life.
Before I dive into it, I’d like to give you a little background on myself. I graduated from Brandeis University with my Bachelor’s in Biology and from Columbia University with my Bachelor’s in Nursing. From there, I began my nursing career in the cardiothoracic ICU and returned to Columbia to complete my Master’s in Nurse Anesthesia. I’ve been a Certified Registered Nurse Anesthetist, or CRNA, for the last eight years and a registered nurse for the last twelve.
In August of 2022, my husband and I welcomed our first child into the world, and that is when our nightmare began. Overnight, my life stopped, and I abruptly went from being in the best physical, financial, and emotional shape of my life to the worst. I suffered an extremely traumatic labor epidural placement and overall birthing experience. I sustained several dural punctures and multiple intrathecal catheters during the procedure. Immediately following, I had a skull-crushing frontal orbital headache that lasted the duration of labor and subsided following delivery.
Over the next five days, my symptoms dramatically worsened. My vision was so blurred I couldn’t see with my prescription glasses. The neck and interscapular pain were so severe that I actually thought I had broken my neck somehow during labor. I would get thunderclap headaches that came on intensely and seemingly out of nowhere, which transitioned to the classic positional occipital headache.
I was advised that post dural puncture headache is self-limiting, and my best option was conservative measures to try to hold out for seven to ten days, and it should all get better on its own.
Well, here we are 28 months and seven procedures later. I was discharged in poor condition on day four. I lasted one night at home before having grossly decompensated overnight. My symptoms were no longer alleviated while lying flat and only improved from being upright. So that morning, I returned for my first of many blood patches. This headache was unlike anything I had ever experienced. Still to this day, I cringe saying “headache” because describing it solely as a headache isn’t a fair representation for the compilation of symptoms that accompany my leak. I think reducing this condition that affects every cranial nerve to just a headache minimizes the true extent of suffering patients are living with.
In my best attempt at explaining what it feels like, anytime I’m upright, I feel this tugging and squeezing sensation at the back of my head. It’s as if someone inserted a corkscrew into the base of my skull and started applying downward traction in an attempt to pull my brain out – and placed a lead vest on my shoulders, adding another 5 pounds every minute I spent upright until the weight is so unbearable it drags you to the floor.
In addition to the postural headache and neck pain, some of the symptoms I’ve experienced include: autonomic dysfunction, dizziness, blurred vision, tinnitus, muffled hearing and hearing loss, facial and throat numbness, severe cognitive dysfunction – particularly in areas of multitasking and memory – sensitivity to light and sound, violent full-body postural tremors, sleep apnea and breath-holding episodes while awake, and profound motion sickness, not only as a passenger but also while operating a vehicle myself. Almost all of this would resolve immediately upon lying flat.
Overall, I’ve had five blood patching procedures – three with fibrin glue. Each patch has provided immediate relief. But unfortunately, relief has only been temporary. About 36 hours after my second patching attempt, I began experiencing signs of chemical meningitis and severe rebound intracranial hypertension. This earned me a week-long inpatient stay and, unfortunately, forced me to stop breastfeeding. But instead of receiving treatment for the excruciating pain I was in, I was told I had postpartum depression and needed to go on a 30-minute walk every day – no excuses. I was discharged in far worse condition than I came in.
Once I made it to a leak specialist, it was noted that I had some suspicious MRI findings at L2-3. After two rounds of temporary improvement with fibrin, we performed a CT myelogram. While it did not show a leak, it did show a small dural outpouching and suspected arachnoid bleb at L1-2. To share how subtle a finding this was, here are two images from my CT myelogram in the sagittal and axial views. The dural outpouching is indicated by the red arrows – easily something that could have been overlooked. Ultimately, I had an exploratory laminectomy in May of 2024, which confirmed the radiological findings at L1-2 – a transparent leak and another area of dural compromise at L2-3 that were repaired.
After surgery, I felt incredible. The first morning I woke up after surgery was the first morning in 680 days that I did not feel like someone had cracked me upside the head with a bat. I was doing very well for about four weeks and, while laughing, felt two pops in my lower back. Slowly but surely, all of my symptoms came back over the next six weeks, and I’m still undergoing treatment at this time.
I want to go back and discuss some important reflections and considerations I’ve noted during my journey. When should follow-up occur in postpartum patients after a blood patch? From my own experience, after my first patch, my symptoms took about six weeks to become clear that they were not the normal postpartum changes doctors were claiming them to be. I wasn’t shocked to learn that the process of uterine involution also takes six weeks. I believe part of what attributed to the slow return of symptoms was my enlarged postpartum uterus acting as a sort of internal abdominal binder before shrinking back to its pre-pregnancy size. I would love to see more research with follow-up in postpartum women who have experienced dural punctures with follow-up in this time period.
When my symptoms returned after that first patch, they were so severe I could not be upright for any reasonable length of time. I couldn’t get through a 5-minute shower without lying on the floor. I couldn’t change a diaper, cook a meal, drive, or tolerate making calls to organize my own care. Most days, I was lucky to get dressed, and my husband thought I was dead on a daily basis every time he found me on the floor in different rooms around the house. Truth be told, I have wished I was dead many times throughout this journey. The constant and unrelenting pain is all you could focus on 24 hours a day. What should have been the happiest time in our lives was instead filled with such profound sadness, hopelessness, unimaginable pain, and guilt that I might not be strong enough to get through this.
After my first round of circumferential fibrin patching, I was able to be upright for longer stretches of time. We chose that approach because my doctors believed that a through and through puncture to the ventral side of the dura was highly likely. Because of the tremendous improvement that I had, I believe that assumption was correct. That, plus the surgical findings, meant I had a minimum of three dural punctures and quite possibly more.
We’ve learned in school and from publications about CSF leaks that they are financially, physically, emotionally, and psychologically devastating. But what we didn’t learn is what that looks like, and I want to add a little substance to those words and share what that looks like within our family.
Financially, I was a sole provider in our household, as my husband was getting ready to stay at home with our daughter. I went from being debt-free and having a six-figure income to losses that are approaching seven figures, and I’m not fixed yet.
Physically, I’ve watched myself deteriorate from being mostly bedridden for over two years. I used to run, bike, or strength train several times a week. I prided myself on my athletic physique, and now I can’t lift a gallon of milk without getting a headache. I’ll never be able to enjoy the activities I loved without fear, since something as benign as laughing was enough to cause me to start re-leaking.
Emotionally and psychologically – that alone could have taken my entire lecture. I suffered from severe PTSD after the birth trauma. I would wake up nightly, having night terrors at 2 a.m., reliving the entire miserable labor and subsequent hospitalization. I still have flashbacks most nights, but particularly on high pain days.
My husband does everything – caring for me and my daughter – which makes me feel useless and unequal in our relationship, despite him never making me feel guilty about my limitations. Because of those limitations, I could not lift my daughter for most of the time she’s been alive, and our bonding has significantly suffered. Everything has to be daddy. Every time she wants praise or every boo-boo, she runs to daddy. As you can imagine, for any mother, this is utterly devastating.
I also had to grieve what my life was versus what it is now and what it may never be again. I lost my identity, all my hobbies, and everything that I built before my epidural happened. I had to cope with not being able to live up to what my expectations were, bringing this beautiful little girl into the world, and that everything I had hoped to give her was no longer possible.
I want to stress that every single day living with the leak is agonizing. It’s Groundhog Day. You’re destined to wake up, stand up, and live on a clock, never knowing just how long you’ll be able to get through things before the pain sets in. Planning anything at all is incredibly difficult because every day, every hour is different and unpredictable.
My quality of life has suffered immensely, and it’s so incredibly important that healthcare professionals are aware of how taxing this condition is and how profound the consequences of misdiagnosis and delayed treatment are. Throughout the most difficult parts of this journey, I’m extremely grateful to have had as much knowledge on the matter as I’ve had. I’ve never witnessed or experienced another condition that is surrounded by so much skepticism. Before making it to leak-knowledgeable providers, I’ve had to defend, reason, and advocate my way into getting further treatment while I was irrefutably the sickest I’ve ever been and now responsible for taking care of a newborn. When dealing with a condition as severe and disabling as this one, if there is a reasonable suspicion of ongoing symptoms, it needs to be taken seriously and addressed swiftly. I can vouch for just how quickly months turn into years.
“The good physician treats the disease; the great physician treats the patient who has the disease.” This quote has always resonated with me, and I think practitioners should be reminded of this when evaluating patients with CSF leaks. Despite knowing our imaging technology limitations – specifically that iatrogenic leaks frequently don’t show up – I think it’s important to recognize that we’ve become so reliant on it to diagnose leaks that patients are often left suffering until they find a provider who understands this. It took seeing many physicians before finding one who is not only knowledgeable but who wouldn’t just hear my story, empathize, and write a referral. Instead, we’ve tried to improve my day-to-day life and hold me over while in between procedures by ordering things like IV infusions, various nerve blocks, having me wear an abdominal binder, and even applying for a handicapped parking pass. While relief from these treatments were expected to be short-lived, every bit of relief was needed.
So, for practitioners, what I think is important is to remember what’s at stake here. We are quite literally fighting for our lives. And no, not in the ICU acutely ill kind of way, but for everything else that comes with it – for my family and our livelihood, for my marriage and our friendships, for my health and my job. We are desperately fighting to keep it all together.
To the other patients who are suffering with leaks, try to remind yourselves that this is temporary. Keep fighting, find a purpose, and be kind to yourself as you adjust to your new normal throughout this horrible journey. Having experienced a leak feels like a rite of passage because you know that every day living with a leak is torture. I must commend the leak community, and I want to thank you for your ongoing support over the last two years. You truly are the strongest and most resilient people I’ve ever known.
I hope I’ve been able to shed some new light on post dural puncture headache in a way you may not have thought about it before and that my journey living with it comes to an end soon. Thank you.