Transcript
Good morning, everyone. Well, this is super meaningful to be here, I can tell you that. I was fine until I realized I had to follow Dr. Gray, so now there’s a little bit of pressure here. I’m going to share a little bit about my tangled pathway to diagnosis, a bit of my leak story, and touch on my approach to living with a spinal CSF leak, in which I use the acronym ADAPT.
But before I do this, I want to give special recognition to the neurologist embedded somewhere in the nation’s Corn Belt, who was responsible for the traction I finally received for a diagnosis. This person recognized subtle clinical signs and that what I carried with me was agonizing in terms of the neurological symptoms but threatened to upend my career. He also believed in me, and he told me so. And he recognized that my symptoms undermined my coping. That person is still central to my story in that he heard me the way we leak patients are desperate to be heard. Now, I think this kind of care embodies not only clinical acumen but patience and flexibility, and the ability to hold hope for the patient.
An example of holding hope came for me during one visit when he said, “I will figure this out. It will just take a little time.” I’ll never forget that. Now this assurance allowed me to focus on what my role was: that was being a patient, taking care of myself. Frankly, I felt a lot less compelled to stay up really late at night researching neurological diseases online, so I was able to move on from that a little bit.
Now, hearing someone can mean hearing them in terms of collecting data, right? But it can also be something so much more – hearing the patient struggle with those symptoms, but also drilling down on the sometimes perplexing story of how the patient got sick, or how the patient has no idea how they got sick.
At the time of my leak onset, I lived on a farm in Texas and had just accepted a job out of state. So excited, I was physically fit, confident, and looking to the future. Then, on one ill-fated day, I lifted a much-too-heavy chair and felt a soft, painless pop in my back. Of course, I continued moving boxes, and I even drove my load myself out of state. It wasn’t long before I started to feel very strange. My face grew numb. I suddenly became really anxious, and I had no reason to be anxious. My arms were electric, and when I finally got back to the hospital, I could hardly type on the keyboard because my fingers were so clumsy. I tell you what, I really started to worry.
That same day, I went to the local doctor. He said, “Jodi, common things are common. I’m sure it’s anxiety. After all, you’re leaving your beloved farm.” Sadly, though, during this difficult time, my mama cat died, and the vet said it appeared as though she was poisoned. When I got home from that appointment, I found a dead barn owl dead in my yard. Now, I don’t cry very easily. People that know me would say that’s true. But on that day, I really let loose. And in that cry, I heard a tone followed by a really creepy sense of derealization. It was very scary. It felt like my environment was at a distance from myself, and this lasted weeks. It was hard to explain to people.
Now, I knew that whatever happened to me was really dang serious, and I considered that maybe I was poisoned. I got a little hung up on that idea, and I thought maybe I’d die. So, it didn’t take long before I popped up at the local ER, of course. The story I unpacked was quite desperate and it was overly detailed, filled with all the details of my stress, grief, and symptoms. Many labs were ordered, they gave me an IV, I suppose, to freshen me up, and I was sent home.
At my first neurology appointment, I was lucky enough to get in about a week later, and I could not write a check for the appointment. I really began to worry about what was going on up here, in my head, and whether or not I could even make good decisions at the hospital where I worked. Could I drive?
Now, us patients that are sitting in your offices, when we’re going through these disturbing symptoms and pain, sometimes the only thing we can think is, “Can you just make this stop?” And when it gets to be weeks and months later, some of us ask, “Do you even believe me?” Looking back, I know my leak onset story and my misdiagnosis, which I’m going to tell you about, were really a perfect storm of factors: lifting a heavy chair, failure to recognize my injury, an over-focus on details that were emotionally relevant to me but really not medically relevant, and days later, a point of Valsalva. Now, this is the heavy clue, right? And get this – I didn’t mention this initially at my appointments, looking back, I think, out of a little bit of shame, but I will also tell you that nobody asked me about whether I had a moment of Valsalva or even explained what that could be.
Now, from the first points of contact to the many specialists I’d see, I verbally laid down like a trail of breadcrumbs as best I could. My core symptom was “trampoline walk,” which is a spongy, funky type of way of the world moving as you walk. It was horrible. Pressure behind my eye, double vision, light sensitivity that got worse and worse as each week went on, and abrupt nausea with hearing changes.
Now, to complicate matters, I did not have an orthostatic headache – not at all, not in those first months – just pressure and a weird sensation in my eye. And my first few brain MRIs were read as normal. The headache when upright, trust me, became quite clear many months later.
Now, I saw eight different specialties over nine months in three states, and there they are – they’re actually in the proper order. And here are some of the diagnoses. Now, the anxiety diagnosis was, one clinician said if I would just get some counseling for my stress, my headache would probably be alleviated. It was about at that point that I located that neurologist I mentioned, and he was a headache specialist. He was right where I’d settled. That’s not him, by the way, fortunately. But I want to say, I unwittingly became the center of a power struggle at the local hospital. I’d gotten so sick that I was admitted by my neurologist directly onto a really busy neuro floor. But the head of the service, in the dead of the night while on call, reviewed my record. He came to my bedside and said, “Jodi, you have medication overuse headache,” and he discharged me. I left before the sun came up, in a state of confusion, disgrace, and with dwindling hope.
Well, as my medical file expanded, I wondered when it would occur – the dreaded suggestion that all of this was actually psychogenic. I remember the reference to seek counseling all too clearly. At that critical point, the neurologist I referenced began to see me with greater frequency. He burned through a variety of office-based tests, ordered up labs, and then on one Friday, he sent me home for that 48-hour flat test. Now, I thought that was kind of kooky. I wondered where we were going with this, but I followed the directions to a T. And when I returned, I reported that I felt much better when consistently flat. He explained what a spinal CSF leak is, and he personally saw that those referral faxes were sent to the centers across the country. I will never forget that.
Now, I’m going to segue a little bit here. I believe there are certain points along the leak journey that are risk zones for anxiety and depression. And we know a little bit about the depth to which patients’ quality of life is greatly compromised, thanks to the research of Dr. Friedman and her folks, and even more research recently. I think this pre-diagnosis phase is as stressful as it gets with an undetermined illness. And for those who encounter even additional stressors, like financial strains, insurance blocks, or losses along the way, then even more so. Now, as I look back over the last six years of my leak journey, I’ve had the privilege, really, of undergoing many different types of imaging and treatments across the country.
I didn’t realize that was going to be so blown up, but okay. Why did I choose that slide? In 2023, a venous fistula was found with photon-counting CT, and it was embolized. I experienced great improvement immediately in my life. Unfortunately, in my zest for living this summer, while pulling my kayak up the riverbank, it seems a new leak has manifested.
During this journey, though, I recognized, looking back, my mental health was compromised. I suppose, as a psychologist, I kind of thought I had a coat of armor. However, during this leak journey, a few key concepts then would later become ideas for ADAPT, and I was asked to touch on this just briefly. So, research tells us that chronic pain is isolating, right? For those whose leak is not addressed or when treatments fail, life with daily pain turns into psychological distress. This form of suffering has been linked to what they call a “loss of self.” Researcher Sharma described a “crumbling away” of former self-images.
Now, in this predicament, it’s not uncommon for patients to dwell on their losses and to mind-wander into negative thoughts, which cycle and create that depressed mood, which then pervades. We know depression with medical illness is linked to negative outcome. I think there’s probably some room for research for someone, I’m sure.
Now, this flower is actually really close to my house. It’s still there all summer into the fall, it’s growing literally out of the cement, and I thought that’s a wonderful symbol of resilience. I imagined a mental scaffolding for daily living with the leak, and I can only touch on a few statements, of course, this morning. Here’s ADAPT broken down:
Acceptance: Acceptance is not throwing in the towel. It’s really an active stance. Here, we stop battling what has happened to us, the trauma that has happened to us. We acknowledge reality, and we take a rest from it. There, we open ourselves up to what we can change.
Diagnosis: There’s so much I could say here, but I guess I’ll just say that for many patients, diagnosis is an arduous process. Their unique stories and histories, if they can tell it, get lost – especially as time goes on and the file grows. Now, if you’re out there and you have no diagnosis yet, you have normal imaging so far, or you’ve had those failed treatments, keep in mind, please, the fast pace with which technology is improving.
Advocating: To me, is really a big deal, and I think it’s key to ADAPT. This can start from the earliest point of the leak and go all the way through to beyond recovery. Sharing information even at your local clinic – I have found I was very well received, and they love getting articles and, of course, those coffee mugs from the Foundation. There’s also the need to talk about the need for specialty care. I’ve spoken with some clinicians in different areas where I’ve visited, and they had no clue that a spinal fluid leak really needs specialty care. They say, “Well, why don’t you just go to the ER and get a patch, and it’ll be over with?” So the information is really critical.
Planning: I like to think tactical and practical. I try to keep that in mind, and now I’m back to that again. Even if you’re bed-bound, thinking forward is critical and trying not to look back. Plan on combating that deconditioning—that’s a much bigger deal, I found out, than it seems. For me, the big battle was planning and understanding “The New Normal.” I couldn’t figure out what the new normal is. Well, what I finally know about that is that after I was sealed, I didn’t feel the same as I did before the leak, which was kind of a bummer. But I can tell you, I felt pretty fantastic, so the new normal can be wonderful.
Thriving: Keeping it simple sometimes is key. For those of us that have been very, very ill – or still are – enjoying your quiet hobbies. For me, it was books and just organizing them on the shelf when I was unable to read for many weeks. Sometimes just putting my feet in the grass for some texture and tactile experience.
In conclusion, I just want to say adaptation to a spinal CSF leak requires not only those environmental changes, like post-patch or surgery, but perhaps just as important are those purposeful modifications we can make to thinking and behavior. I believe these modifications can protect mental health. Talking here today is part of my advocacy, but it’s also part of my adaptation, and, now again, it’s part of my recovery pathway.
Finally, whether you’re here through your scientific work, or you’re offering up your humanity in clinic, or maybe you’re providing care for a loved one with a leak, I know your work ensures a more hopeful future. It does. This is a future where a leak is part of the early differential diagnoses and where patients who must live with a leak can look forward to a cure. Thank you.