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Transcript
I am very fortunate to be here today speaking as a patient who has recovered from spontaneous intracranial hypotension on two separate occasions. I feel especially lucky, considering how unusual my latest case was. Several features of my case contradict common assumptions about SIH, but the most peculiar one was my brain MRI. My Bern score – a radiological score assessing the likelihood of locating a spinal CSF leak – was zero. Many physicians would conclude from this that I could not have a spinal CSF leak.
I did not have one spinal CSF leak, though. I had multiple. My story may be uncommon, but it’s not rare. There are spinal CSF patients around the world who suffer debilitating pain every day without a whisper of evidence on their brain MRIs. Many spinal CSF leak patients with negative brain MRIs are even denied care outright. I am very fortunate that I was not one of them, but even with a history of SIH resolved by a blood patch, a diagnosed connective tissue disorder, and textbook symptoms – I battled to access spinal CSF leak care.
Thankfully, I was eventually able to get the help I needed. The neurologist who coordinated my recovery said that my normal brain MRI meant little in the context of my care decisions because my story lined up so perfectly with the spinal CSF leak. This remark made me realize something: had I not told my story well, I likely would have never received the care I needed to recover.
Advocating for myself as a patient with a negative brain MRI taught me how much the effectiveness of our communication can influence our care. The critical task of telling the story of our leak is in our hands. There is more power in that than many realize. Learning how to communicate with our providers using forethought and strategy positions patients to avoid many miscommunications and access the care we need.
In this talk, I will share with you the methods and tools that I have used to try to communicate effectively with my providers while navigating the odyssey of spinal CSF leak care – even when I reached an impasse along the way. The practice of mapping out a plan for each conversation with my physicians has been a game-changer for my care.
In the days before an appointment, I create a communication game plan in the form of notes that I can reference during my appointment while talking to my doctor. I write these notes in a collaborative tool that can be referenced by multiple people across devices, such as iCloud Notes or Google Docs.
Before an appointment, know what you would like to get out of it. We, as patients, pursue spinal CSF leak care in order to one day be sealed, but what results specifically would you like from your next appointment with your provider? Even if your doctor cannot directly treat your spinal CSF leak, there is still much they can do to help. Do you need medication to manage your debilitating nausea? Do you need a new brain MRI? Be mindful of your chosen goal, and be sure to speak up.
Next, ponder your story. This story is a way of thinking about how your medical history and symptoms together paint a picture of your condition. In my opinion, this is the most important thing for us as patients to get right. A study found that doctors were able to correctly diagnose patients solely based on their history 76% of the time. So, our doctors are counting on us to give them a window into what it is like to live in our bodies, past and present. So, think critically about your unique symptoms and history. Spinal CSF leak patients often have a laundry list of symptoms, but focus on your three worst issues and why they are worthy of your doctor’s action. Pay special attention to what improves or worsens your symptoms.
Think back to any notable events that occurred before your leak pain began. Think about the ways that your symptoms are a drastic departure from your normal life. Certain details might raise the suspicion of a spinal CSF leak when a doctor might not consider the diagnosis otherwise.
After determining how to tell the story of your condition, it is important to demonstrate that your story is credible. One way to do this is to bring along any medical records that reinforce your story. A new physician may or may not choose to trust me, but I found that they’re far more likely to believe the notes of an impartial third party – especially if this person is also a physician. Another way to boost your credibility is to bring a support person with you. Your support person can be anyone you trust to advocate with you. Hearing the perspective of someone who believes in your pain and is invested in your recovery may nudge a skeptical doctor into believing you. Communicating effectively with your medical team is also just a lot easier with a teammate on your side. If there’s someone in your life who can fill this role, please ask them for help.
Preparing strategically and bringing a support person along are practices that set our appointments up for success, but they aren’t guarantees. Over my time seeking care for my spinal CSF leaks, I have seen the unexpected happen time and time again and I’ve learned to react to these curveballs. So, what can we do when medical appointments don’t go according to plan? Here are some barriers that I have experienced in pursuing spinal CSF leak care and ways I found to potentially move past them.
One problem that has cropped up multiple times for me is physicians misunderstanding my medical history. Medical history errors can often be minor, but some mistakes can cause longer-term consequences in care. Despite finding multiple possible spinal CSF leaks, a physician once told me that my debilitating head pain started because I was a yoga teacher who did headstands. I’m not a yoga teacher and I’ve never done a headstand in my life. It was an uncomfortable moment, but I had to speak up and tell my physician that they may have been mixing me up with a different patient. My spinal CSF leak care at that institution would have ended right there had I not done so.
Another issue that I, and many other spinal CSF leak patients, unfortunately encounter when pursuing care is receiving misdiagnoses. Many spinal CSF leak patients are first misdiagnosed with conditions like migraine, cervicogenic headache, and depression.
While some of these conditions may be comorbid to spinal CSF leak, in my case, they did not fully account for my symptoms. As a spinal CSF leak patient without visible brain sag, I encountered multiple misdiagnoses. During my first-ever appointment seeking care for a leak, my former neurologist interrupted me mid-sentence to tell me that this was just a migraine. He prescribed me several migraine medications, none of which helped at all. I insisted that the only time I was free of my head pain was when I was lying down. Between the lack of response to typical medications and the unusual nature of my pain, my doctor eventually agreed that this was no migraine. He then referred me for a non-targeted blood patch, which resolved my symptoms for years.
During my second occurrence of SIH, I was misdiagnosed with cervicogenic headache. I asked my physical therapist, who specializes in head and neck pain, to evaluate me for various causes of cervicogenic headache and document her findings. Her evaluation made a strong case against that diagnosis. If your doctor is receptive, an assessment from the right provider can be impactful. If you receive a diagnosis that does not fully explain your symptoms, consider respectfully asking your physician why they think that diagnosis is the source of your symptoms. Based on their answer, you might have the opportunity to address any possible misunderstandings about your symptoms or history.
Advocating for ourselves respectfully is the right thing to do and, if all goes well, can get us the care we need. But what happens when, despite our best efforts, we reach an impasse with a doctor? During my second occurrence of SIH, I made the difficult decision to walk away from a treatment center. I used every tactic I’ve described here, trying my best, in spite of roadblocks, to work with the physician I was assigned to.
A this first institution, the photon-counting CT myelogram you see here was performed. Sadly, no definitive leaks were found. These two suspicious areas seen here were targeted for embolization, one at a time, but my symptoms were overall left unchanged. I had recovered from a spontaneous spinal CSF leak before. I felt I was experiencing one again, but that it just hadn’t been found on imaging yet. My physician seemed to feel otherwise. Determined to recover, I did in-depth research, learning about the range of approaches to myelography even across expert centers, and I wondered if one of these other techniques would yield different results for my case. So, I decided to advocate for myself, and I transitioned my care to a center that used a different technique.
It turned out that there were, in fact, two CSF-venous fistulas that were not visible on imaging conducted at the first institution. Here’s an animated comparison between the myelograms between the T11 and 12 level at these two institutions, and here’s a comparison between myelography at the T3-4 level. I’m extremely thankful that the second center I went to found these two previously unseen CSF-venous fistulas on their first myelogram. I was promptly treated; my recovery was dramatic. My spinal CSF leak symptoms are gone to this day, and I hope that continues.
Despite patients’ best efforts in communication, sometimes there really is just no path forward. Some of us then have to make hard choices to pursue what we believe is the best possible care for our case, as I did. But there are other circumstances where it’s appropriate to part ways. For example, while physicians and patients will not always see eye to eye, if you have a physician who is treating you with disrespect or making you feel unsafe, please seek care elsewhere. If you don’t have other care options, consider pausing treatment until there are safer care options available. In any case, ask yourself if you may have more to gain than to lose by leaving a care center. For me, it was the right decision.
I wouldn’t be here right now without the compassionate physicians who chose to listen to my story in spite of my negative imaging. As we patients find our voices and hone our communication skills, I’ve seen that many physicians are also doing the same. Over time, I hope that fewer patients will be faced with the difficult choice that I was, and that more of us can access the care we need.
I’m encouraged by how much enthusiasm there is here for advancing this field and by how many physicians are presenting newer research here today. I think there’s much for patients and providers alike to be hopeful for.
So, I ask my fellow patients to please bring your most well-prepared selves to the patient – physician relationship. We owe it to ourselves and to the doctors we work with. When we prepare thoughtfully for appointments, communicate strategically, and approach our healthcare providers like respected teammates rather than adversaries, we bring our best to the table. And in doing so, we help our physicians to be their best too. Thank you.