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Today I’ll be discussing, again, the logistics of care and aftercare. It might seem like some basics, specifically just practical strategies that I found helpful managing a life affected by a spinal CSF leak over many years – both while leaking and in recovery. I’ll include some of my approaches to coping with the challenges we face managing symptoms and the limitations we face navigating care – specifically preparing for procedures and some travel tips.
This has come up already – you don’t know what you don’t know. It’s a straightforward way of saying we’re simply unaware of the information we have yet to receive. When I started this journey, I approached care with an understandable naivety. I thought if I consulted with a specialist, had a definitive test and treatment, I could swiftly put this behind me. I did not realize the significant learning process, the difficulties that could arise when managing and navigating care for a complex illness. I believe there are many other patients that might feel a similar unpreparedness or uncertainty about the unknowns they face. I hope that by sharing some of what I’ve learned, I might encourage a dialogue that helps others navigate their own unique journey more effectively.
Before diving into some practical strategies, I’d like to share a bit about my personal story that’s influenced my perspective. About seven and a half years ago, getting out of bed one morning, I experienced an intense headache along with a wonkiness – you know, that’s a technical term – I just couldn’t put my finger on. Over about six weeks, a collection of odd symptoms arrived and grew in intensity, sidelining me from daily activities. My symptoms included a constant head pain, sensory dysfunction, nausea, brain fog – all that worsened when I moved or exerted myself.
The initial brain MRI showed no signs of the “big and scaries,” as the doctor put it at the time, adding I should be relieved. But desperate for help, I saw numerous physicians. I received diagnoses of migraine, chronic daily headache, medication overuse headache, TMD, and new daily persistent headache – but no treatments directed at those diagnoses provided relief.
Two years after my onset, one doctor suggested, “You might have a spinal CSF leak,” a concept no one had previously considered. I went online, researched extensively, and got referred to a specialist. Also, near this time, I discovered the 48-hour flat test. Eye-opening results provided encouragement I might finally be on the right path.
I accessed my spinal CSF leak care through many out-of-state trips for imaging and patch attempts, but a definitive diagnosis remained elusive as my imaging didn’t show evidence of a leak. Some patch attempts brought limited, short-term symptom improvement – others did nothing.
Finally, one non-targeted blood patch improved many symptoms that none of the prior medication or migraine headache therapies did, and with it, my first experience with rebound high pressure. This was an incredibly confusing time because there wasn’t much relief in the totality of my symptom experience. Rather, my symptoms were different. Most notably, head pain was worse lying flat and improved when upright. Vision was a different kind of blurry, and many foods were suddenly spicy.
We weren’t able to manage the rebound well, as my body did not respond as expected to the common medications typically used. I have since discovered that I have a mast cell disorder, unbeknownst to me at this time, which likely played a role in prohibiting the rebound symptoms to be more effectively managed.
Rebound high pressure lasted eight months, and then leak symptoms returned over the course of a weekend. It was a devastating setback, akin to life being like a board game of Chutes and Ladders – and leaking was that longest slide back to what felt like the beginning.
I immediately pursued leak care again, but the lack of imaging evidence made it hard to know how to proceed. This time leaking, my symptoms were more severe, forcing me to stay flat as much as possible. I could only be upright for the most basic personal care, like using the restroom and eating.
As I shared in my “Recovery Is a Verb” talk last year, I made 11 trips out of state for specialist care. Many of those trips encompassed multiple procedures – like a myelogram followed by a patch attempt a few days later. On the 10th trip, we finally located my leak site and targeted it with a fibrin patch, producing two weeks of symptom improvement.
In early 2023, on my 11th trip, my leak was successfully repaired via surgery. While I’m grateful to be sealed and most of my leak symptoms significantly improved or fully resolved, I’m still in the process of healing from the toll of leaking.
Building on my talk of recovery last year, I’d like to share some insights that only time could provide. First, I’m frequently reminded that patience is required as my body continues to heal from long-term leaking.
Second, having a primary care physician who leads with compassion and is willing to navigate the nuances of my current status is essential. Managing ongoing rebound pain now, with those symptoms along with the complexities related to MCAS, has been challenging. It was just a few months ago, actually, that I discovered my rebound symptoms could be more effectively managed by providing my system with additional MCAS support. I’ve realized that progress is ongoing, although it may be slow. When I reflect three to six months back, it’s evident that I’m still making strides in my recovery.
Now let’s shift to what I hope will be most helpful to you – practical strategies I use for managing a life interrupted by a spinal CSF leak, useful for both when leaking and in recovery. I’ll discuss my approaches to coping with those challenges, navigating care, preparing for procedures, travel, and recovery.
I found the Foundation website specifically helpful in resourcing me to manage the emotional burden of the leak experience. Specifically, the ADAPT series mentioned yesterday deeply resonated with me, as well as connecting with other patients on Inspire. Pursuing mindfulness, learning all I could, and persevering were my cornerstones of daily survival.
Pre-leak, I proudly identified as a physically capable mom, but when that freedom to do is stripped away, the loss of purposeful identity can become problematic. I approached this challenge by establishing new structures and routines that, while different from before, prioritized effective strategies for caring for my current self and finding meaningful ways to contribute to my life despite the leak.
For practical management of day-to-day challenges, I found this framework helpful both while leaking and in recovery – plan ahead. You have to get organized and adjust your responsibilities to whatever your capacity is, setting up my environment to be more convenient and safe – more on this in a bit. Embrace routine, prioritize my symptoms of taking care of myself because every little bit helped. Accept my limitations, try not to push myself, and be willing to accept help and be creative, open-minded, and patient with myself.
Like other patients, I too set up my environment to increase my safety and improve my efficiency of my limited uptime. I made modifications to reduce my risk of falling, having things within easy reach and often waist high, and avoided the BLTs – bend, lift, twist. These modifications were essential in helping me to prevent my symptoms from worsening while leaking but also to protect my movements while I cautiously navigated recovery.
Here are some of my favorite items to help me more comfortably and safely function within my limitations. While leaking, that desk on the left allowed me to lay flat and work on my computer, with a little attachment that held my phone and my puppies laying on my abdomen, which also helped. The rest of these things were helpful both during leaking and recovery, like having an adjustable height table, a mini fridge close to me to change out cold packs – that was a game changer, an over-the-door organizer, an easy storage solution, grabber tools (not pictured but mentioned by a lot of people helpful), a tall broom and dustpan so I didn’t have to stoop, a toilet paper holder so you don’t have to twist, and this pill box. It helped me not only to remember but to limit my uptime in taking them.
Next, I want to share strategies I discovered helpful in navigating medical care, including documenting my personal information, preparing for appointments and procedures, and the travel needed. For me, personal record-keeping was really important. First, because my cognition was seriously compromised but also due to the sheer complexity of this condition. This is the approach I found helpful. Documenting daily trends was the most important. I could more easily recognize patterns to evolving symptoms during leaking, but it was especially valuable during recovery or confusion related to overlapping conditions. I documented my daily symptoms using my phone notes, but apps can be helpful here too. Additionally, I created simple Word documents to maintain organized records for easy reference – all my symptoms, a medication and supplement list, my care team, and a timeline. I also made it a priority to request copies of my after-visit summaries, discharge instructions, and imaging reports – and also the actual images. This might sound like a lot of work, but I found intentional organization provided not only valuable support for me but it sometimes led to meaningful discoveries.
Moving on to diagnostic procedural appointments – after experiencing many myelograms and patches through various specialists, here’s my approach to ensure that I’m adequately informed and prepared for the experience and the subsequent recovery. I ask my doctor to please walk me through the procedure. If it’s a myelogram, I ask what sections of the spine will be done, how many lumbar punctures will I have, and what if my leak symptoms worsen. For myelograms as well as patching, I ask what is typically used for pain and what sedation options are offered. For patching, I want to understand what imaging guidance will be used – will it be targeted or non-targeted, what levels of the spine, and will it be blood or fibrin?
Even though it’s likely we’re all different and unique, I also want to ask about concerns or complications I should be aware of. I ask my doctor what to expect in the immediate recovery time and what the plan is for discharge. After patching, I’ll ask what is the designated flat time. I also make sure we discuss post-procedure guidance before the procedure so that I can ask questions and prepare accordingly. Did I receive the guidance on the time immediately following discharge, to how best to manage my symptom and the other pain and symptoms? For post-treatment, I ask what is the plan if rebound high pressure needs quickly addressed. I also make sure I know who to contact if I have a problem or a really important question.
Next, I want to share a quick helpful checklist I used before any procedure in hopes of making the recovery time a more comfortable experience with a hopeful positive outcome – plan ahead, ask lots of questions, including guidance on when to stop certain medications or supplements before and after, contact patient relations if I needed more logistical assistance on site, and update my care team so they know what’s upcoming so they can support me as needed, prepare my companion advocate as needed, prepare my environment dress accordingly – this is often loose-fitting clothing, slip-on shoes – follow all the instructions, prioritize nutrition and sleep before and after – as others have mentioned – practice the log roll beforehand, have a plan to avoid constipation, and just remember to breathe.
Many of us travel quite a distance seeking care – often by car and by plane – and stay in a hotel near the procedure location. Here are my top tips when traveling: For car rides, I found it helpful to recline the seat, use a supportive neck roll pillow, and have the cool air blowing on my face for nausea. For planes and navigating airports, I tried to book larger seats when I could, or a seat with open seats nearby for more room. And when I just couldn’t manage walking much of a distance, I would request a wheelchair. TSA pre-check is also helpful to speed up the check-in process. It can be helpful to bring a yoga mat or a thin blanket to lay down when you need to lay down. And for when leaking or in recovery, I found it helpful to have small pillows with me, refillable ice packs, a thick eye mask, snacks I liked, and my medications.
For booking a hotel, beware of proximity to your procedure location, compare the amenities – such as free breakfast, access to a mini fridge, parking fees – and definitely ask if they have a patient rate. I always requested a quiet room – for example, not by a busy street, the elevator, stairwell, or over the pool (that happened one time). And remember to bring your personal comfort items to support your care. My must-haves were my pillow from home and cold packs.
In conclusion, I just – I really hope that sharing my experience has provided some insights that might help other patients more effectively navigate their own journey. Thank you.