“Just fight harder” and other myths about living with a complex spinal CSF leak

The following is an expansion of my talk at this year’s Spinal CSF Leak: Bridging the Gap conference, which took place on November 2-3, 2024 in Aurora, Colorado. As with last year’s presentation, I spoke about the complexity of my case, but this year I was asked to address why I’ve deferred treatment and how I’ve managed to make peace with that decision.

The time allotted was quite short, and there was a lot I did not get to include. I was unable to share quotes submitted by other patients about why they’ve deferred treatment, nor what I’ve done on a day-to-day basis to make it through the last 7.5 years of living with a spinal CSF leak (what I call my “n=1 experimentation” in the talk).

This article is part 1 of what I plan to write, and it includes the quotes from other patients. Readers know my case quite well by now, and I’m grateful to those who submitted their quotes so that I can include the perspectives of other patients with their own complicated facts.

I will be sharing a second piece later on with the details of how I cope with the “onion of conditions” I mention below, including the supplements I take and what I’ve tried to help keep my baseline high enough to live semi-independently with an active spinal CSF leak.

As I note in my presentation, I had the privilege of thinking that medical problems would have simple solutions during the early years of my life. I never broke a limb myself, but for friends who did it seemed like a straightforward fix. I had significant stomach and GI issues when I was younger, which in my early 20s I learned was celiac disease. Again, a pretty conclusive solution, albeit a tough one to adjust to at first.

All the way into late 30s, privileged as I was to have gotten through life thus far mostly unscathed, I remained blissfully unaware of being a canary in a coal mine. I spent a decade travelling, writing, and eating around the world, with hypermobility, paradoxical reactions to medications, and a talent for tearing ligaments as my only clues about what was to come. Sure, I got sick more than most people. And yes, ok it was weird that I had so many injuries. I feel silly to admit that it never occurred to me that they would lead to more.

That is, until I got dengue fever in 2013 and my health began its inexorable decline. It wasn’t until years later that I was able to connect the dots and see how those little clues hinted at fundamental issues with my body and immune system. I put my body through so much during my travels, and had no idea how hard it was working to keep me afloat.

A brief note on acceptance

When I sustained my leak in 2017, from my initial frantic reading, the Internet suggested that solutions would be straightforward as well. I’d need an epidural blood patch, and I’d get better.

But accessing care wasn’t that simple, nor was the outcome.

I was denied patching from the facility that did the LP, and in the process was told that post puncture dural headache (PDPH) was “self-limiting”, meaning that it would get better on its own. The physician said that they’d never heard of a patient who “needed” a patch to get better, and that it just sped up the process. He said I didn’t seem like I was in that much pain.

My mistake there, if you can call it that, was that by that point I was so used to chronic pain, that I was a master at disguising it. They took my lack of outward expressions of pain as indicative of how I actually felt, something I didn’t realize at the time may be construed to my disadvantage.

As I say in the talk, it’s coming up on 8 years of leaking this August, so “self-limiting” it was not. I may have complex underlying conditions I didn’t know existed at the time of my lumbar puncture, but I also wish I could have been told: “for most people this condition is treatable with success, but for some it is not.” Instead, I had to come to that place bit by bit on my own, scrounging around for stories of patients with similar facts to mine, reading everything I could, trying desperately to understand whether that life I worked so hard to build of travel and food was really gone.

As you all know, sadly it was gone. And the process of getting to acceptance about that unfair fact is something I touch upon in the talk and write about elsewhere. It’s not easy to get there, and rushing it isn’t really a solution. Eventually, I landed on framing it all as a choice I can make. If all of my energy is spent raging at the twisted inequity of losing my mobility and the way I lived my life, I won’t have any “brain juice” left to write, to advocate for the condition, or try and support the spinal CSF leak community via my volunteer work.

But as I’ve written prior, acceptance is a process — not a simple choice. Eventually, it becomes a choice you can make on a daily basis, but to get to that place it first takes a lot of processing, a lot of work, a lot of grief therapy. I use the analogy of paving over a pothole when talking about this process. If you just pave over it without filling it in first, it’s going to cave in again. If instead you take the time to ensure there’s support for the layer of pavement, the repair can withstand cars again.

I mention this because often ‘acceptance’ is portrayed online as a simple decision, and that interpretation is simply false. If you try to will yourself to acceptance without the processing, it will not actually get you to a place where you can choose your emotional state, but it will also feel lonelier.

And being chronically ill is lonely enough.

This process of acceptance would be something I needed to do whether I got sealed or not. Regardless of net outcomes, I still had many years of pain, loss of mobility, and dependency to reckon with. For anyone, going from independent to relying on others to get basic needs met is a very tough shift. For leak patients, where some physicians still say (as I was told) that it’s not “possible” to still be leaking, it’s a double whammy of contorting to fit into the box of your current reality and trying to figure out how to be taken seriously for a condition that still has a lot of unknowns.

Fighting harder and the “choice” to get well

Then there’s the constant stream of advice for what you should do to get better. And oh, has society ever made a business out of getting well! There’s an undercurrent of judgment there from some people, too, and also a lot of pressure to make different choices. The implication is, if you wanted it “badly enough” you’d be “doing more” to get well. That’s where the title comes from, people saying to “just fight harder” and I’ll find a solution.

I bristle at this implication because, truly, show me a chronically ill person who isn’t trying at all times to get better. No matter the condition, all I’ve seen in my many years of sharing and reading and talking to patients is a truly dedicated attempt at improving their day-to-day lives. Just because those attempts don’t fit the neat little package of “just get surgery and you’ll be fixed” doesn’t mean that those patients aren’t valiantly working hard to make their lives better.

And as you’ll see below, for some, surgery hasn’t been the answer either.

Over my years of leaking, I’ve been told to “keep fighting”, “keep pushing”, to “be a warrior”. I’ve been told that if I really wanted to get fixed I’d have already [insert something here, from turmeric to procedures, to religious ceremonies, and more]. I’ve been told I’m sharing my story “for attention”, that I am not a reliable narrator because “no one leaks for that long because you’d be dead”. I’ve been told I am deferring treatment because “it’ll give me less to write about if I’m not sick”

That last one stung since I had a decade of award-winning writing about travel and food before I got sick and yeah, I’d be over-the-moon to be able to get back to that life.

There’s a lack of compassion in a lot of these myths and accusations, and I think it stems from a few issues. First, the obsession with talking about being sick as a process you “fight” against. And secondly, that for some people, I think it comes from their own fears — they don’t want to accept that there may not be a solution for me because they fear themselves not getting well were they in my shoes.

These perspectives are only spotlighted by the obsession society has with binary choices we’re told we have to make. We are either giving up on ‘getting better’, or we are sealed and healed. We’re either “fighting” for our survival or we’re “lazy”.

Personally, I don’t like talking about my life and conditions in this way. For me, there’s been peace in acceptance, there’s been joy to be found again in letting go of the antagonistic framing. There’s relief in the space that letting go frees up.

Why don’t you get surgery?

Over the years, many people have also asked me why I don’t get surgery. I understand the genesis of the question, because surgery is generally seen as the answer to many an ailment, an invasive option that — if warranted — will fix the problem. If patching sealed me once for 8 months, why wouldn’t I want treatment again?

Unfortunately, I’m not the average case, and I believe that looking at outcomes for people who have more “normal” facts doesn’t reflect my own probability of a successful seal. The heuristic for me isn’t, “will this procedure work?”, it’s “can I live with myself, mentally and physically, if the procedure lowers my baseline or makes me worse?”

From my talk, here is the list of my “onion of catch-22s, i.e. why my case isn’t “normal”:

With a short talk, I did not have time to go into much depth for each item on this list, but I will list out here what they each mean.

1. My lumbar puncture was performed without guidance (so the exact path of the needle is not visualized or known), was performed with 18g (large) needles on my small frame, local anaesthetic was insufficient and I felt searing pain throughout and had a hard time keeping still, and my records note 4 attempts at accessing my CSF. Do I have more than one leak? I don’t know. As a result of this, and the fact that post dural puncture leaks rarely show on imaging (invasive or otherwise — my CT myelogram did not yield a leak site), and surgery would be exploratory.
   
   For what it’s worth, my successful patching has been multilevel and transforaminal — meaning the blood and glue spread 360 degrees around the spine. This type of patching is for ventral leaks, that is: leaks at the front of the spine. I also have searing pain ventrally when my leak is worse, and re-opening my spinal CSF leak in 2017 and relapsing later (in 2023 and 2025) both involved sliding forward in such a way that I felt a tearing at the suspected ventral site. That said, the tearing is also followed by what I can only describe as an elastic breaking inside my spine, or being shot in the back by a BB gun; this happens a few days after the suspected ventral leak opens. A neurosurgeon I spoke with said that the CSF dripping out of the ventral leak may then soak the scar tissue of the suspected dorsal (back of my spine) leak, causing the scar tissue to “pop” off eventually much like a wet Band-aid eventually falls off. Is this accurate? Not knowing my leak site(s) I do not know. But it’s an interesting theory, and if true then two leak sites make my facts even more complex.
   
   In addition, chronic post puncture patients are increasingly finding out that they have “blebs”, a type of pseudomeningocele that involves the arachnoid lining herniating through the puncture hole. This type of finding requires surgery, and as noted below, for my immune system surgery may be difficult.
   
   
2. A geneticist diagnosed me with a heritable connective tissue disorder, which comes with delayed wound healing and impaired tissue repair, among many other issues.
   
   
3. Lab testing confirmed a mast cell disorder that causes frequent anaphylaxis for me since that 4^th round of patching — and that’s without medical procedures. I am mostly stable, but triggers like pollen, wood smoke, and more have lead to hospital visits in the past few years. I’ve written about MCAS extensively, and will share more about how I manage it in my part 2 of this post. For the purposes of my onion, though: how will it affect treatment? Will my body reject a graft if I get one in surgery? How will dyes, if any, in stitches affect healing of the area especially if they’re permanent? Could those stitches themselves cause new micro-leaks? Will I be able to even tolerate pain medication after the procedure? These are all questions I don’t have answers to, and there’s insufficient data for us in the leak world to answer them either. Given my reaction to dyes and excipients in foods and medications, and to metals, my concern is that this condition may lead to unfavourable healing.
   
   
4. My imaging shows adhesive arachnoiditis, a condition that I haven’t written much about over the year. This means my imaging shows nerve clumping and adhesions in my spine, a condition that further treatment or invasive imaging may worsen.
   
   
5. Outcomes with patients who have my facts are also not very reassuring. Do I know everyone with AA, a heritable connective tissue disorder, and MCAS who has a lumbar puncture leak? No, of course not. But the upside of having a public-facing business is that you hear from anyone who recognizes themselves in your facts. Over the years, that is a significant volume of patients. Unfortunately, what I hear is not comforting. In weighing my decision, that does impact my calculus; I don’t have the hubris to assume my case would simply be different to theirs.
   
   
6. I had rebound intracranial hypertension (RIH) following my last seal, and that was only after a few months of leaking. This condition is a “backwards land” feeling to leaking, where lying down increases your head pain and standing up eases it back somewhat. I was on methazolamide for my RIH when I was sealed, and the pain was so bad at the beginning that I could only curl up in a ball and sob. (Sobbing too raises intracranial pressure; do not recommend). There is some discussion in the literature of how when you leak longer term, your body learns to produce more CSF to compensate for the loss of volume. With so many years of leaking, I worry about maintaining closure of a successful spinal CSF leak seal. Studies are also beginning to explore the link between venous outflow disorders and heritable connective tissue disorders, leading to higher intracranial pressure. I am concerned about managing my CSF pressure if I can get sealed, especially given the other facts on this list.
   
   
7. This catch-all category addresses other factors that I had no room for in the talk. The cost of treatment, who in my life would be able to join me and help take care of me in those early days of being unable to do anything, the fact that while I have a PCP in Canada I do not have any specialists related to this condition — and it took me years to even get a PCP. An example I gave in the talk was that when I was sealed last time, my family had to drive to the United States (several hours drive) to go to a pharmacy there and get the methazolamide I needed, as no physician was willing to prescribe it to me without onerous appointments to confirm what was already done in the US. I understand the reasoning for this reticence, but the net result nonetheless made stayed sealed more complex.

The reality for me is that despite the hard work, dedication, and research from physicians in the field, it’s not simple when you are affected by comorbidities that can impact healing, leak recurrence, and treatment tolerance. This is the situation I find myself in. And while I hope for medicine to evolve so that my “onion of catch-22s” can be handled safely, right now it doesn’t feel sufficiently the case that I can risk moving forward with treatment.

So much progress has happened since I sustained my leak, in research, in knowledge, and in education. And yet I consistently hear from patients who are told, still, that spinal CSF leaks are “self-limiting”, or that negative imaging means you “can’t” have a leak. While I am an outlier to the norm, I hope for a day that all patients, complex or otherwise, are able to obtain a successful seal.

My talk at the Bridging the Gap 2024 conference

For those who prefer hearing you can listen to the presentation, below. It was an honour to be asked to present my story to a room of physicians and patients, especially given that I am not the norm in terms of outcomes.

“Why I deferred treatment”: other patients share their stories

I initially asked other complex patients to share their experiences with spinal CSF leak so that I could include their thoughts in my speech. Unfortunately, I ran out of time and was not able to include these quotes. I really wanted my community to read about other views on this issue, as every patient is different. And I wanted those patients to have a means of sharing their story with a wider audience too, as there is strength and understanding in sharing.

The brutality of this condition is hard to accurately put into words. Not only the pain itself but the uncertainty and uphill battle in getting care. It’s commonly misdiagnosed and under-diagnosed. Again, complex cases are not the norm — many patients do get sealed and healed. But a 2024 study about quality of life in chronic post puncture patients (like me) found substantial mental health challenges with depression, anxiety and stress experienced by 83%, 98%, and 88% of the respondents, respectively.

The quotes below sound very depressing, because life is very tough for people in our shoes. Please do not take their quotes as the average outcomes for this condition. I was asked to speak about my situation as a complex patient, and the other “onion” patients below are also in that category.

Trigger warning: one patient below discusses medically-assisted dying.

A patient in Portugal

After 2 failed bloodpatches, I chose not to pursue any further treatment to fix my spinal CSF leak because the risks of complications are high and the success rate of treatment for chronic lumbar puncture leaks is low .  This is what I have observed in other patients since I developed my iatrogenic CSF leak 6 years ago and this is why I chose to wait until safer , less invasive and more efficient treatments are available. My life has enough (many) limitations already, and I have a child — I cannot risk becoming even more disabled.

A patient in California

For me, it was the fact that treatment made me worse. After 5 patches and a laminectomy that didn’t fix the leak, I now have AA. It made sense to me not to continue down this road of trying to fix the leak when the treatment has made me significantly worse. The AA is progressing and has now made even the laying down pretty painful at times. Before, when it was just the leak, I at least always found relief while flat, and now that’s gone too. It’s been a lot to accept as I’m sure you understand.

A patient in California

I am pausing treatment due to getting adhesive arachnoiditis during treatment and I don’t feel safe moving forward although I need additional treatment. I would love to see testing and imaging progress to a point where it does not need to be invasive and potentially make us worse off than when we started. I’d love to see conditions like connective tissue disorders to not only be considered a likely cause for spontaneous leak, but a requirement for better and less invasive procedures.

A patient in Germany

I have had a total of 3 surgical interventions to repair a recurring iatrogenic arachnoid bleb. Although I still exhibit symptoms, I have decided to wait a few more years before undergoing further surgical treatment. My overall functionality has slowly improved over the past 12 months, and I hope to eventually reach a full recovery. I have learnt that medical science still doesn’t know enough about the dura and dural healing processes, especially in patients like me with comorbidities (MCAS, EDS). Since surgeons suspect I might be leaking from the permanent stitches that were applied to repair the bleb, I am hopeful that with time, the dura will slowly heal itself around these micro-lacerations.”

A patient in Canada

After years of living in a body that has caused great torment I can no longer face more medical intervention for spinal CSF leak. I am currently contemplating medically-assisted dying as I have gotten worse, not better, with treatment.

A patient in the UK

I am, after incredible deliberation, reluctantly delaying treatment because with current treatment options, the risk for me personally of getting even more disabled from treatment is much higher than the probability that treatment will reduce my disability/ pain. And given that my CSF leak, and the life changing conditions that it has caused  on top, have left me already severely disabled, 24/7 bedridden and in intractable pain, plus also completely dependent on others for even the most basic parts of living, being worse than I am already, is simply neither a sustainable or livable option. I need to wait until treatment for chronic iatrogenic leaks advances and the reward vs risk ratio turns positive. I pray for me and for my kids, whose lives have been changed beyond recognition by this cruel condition, for that day.

A patient in Virginia

I am choosing to wait for science to catch up before treating a CVF. I have high pressure regularly and don’t see that we really know how to handle high and low pressure well in hEDS. I don’t think there are enough doctors doing the work yet. I am waiting on treatment for a CSF venous fistula or two because I can’t put myself through treatment that has low odds of helping. I have to step back and look at how the treatment will affect my capacity to function, work/earn income, and the toll it will take on my husband and friends who help me […] Science is not at all ready to figure out what is normal anatomy vs a problem to fix.

A patient in Iowa

My doctor suggested surgery. I am now on hold with this. I feel that I need to breath and think. I am functional. I avoid excess bending. I take Tylenol every six hours. When I cough, I put my hand on top of my head. Sneezing isn’t usually a problem. Sometimes my neck bothers me. And I have hand tremors, here and there. Compared to so many, I am rockin’ it. I can do most of my housekeeping  (note: I’m not a great housekeeper), I can socialize, cook, and drive. I’m afraid that the surgery will make things worse. I think there’s a saying about living with an evil that you’re familiar with. I would like to try another blood patch. I need to discuss this with my doctor.

A patient in the United States

I do have some limitations, but I can still do some chores, cook, homeschool my children, drive, go to the store, I meet my friends for our book club and I can go on simple walks. I feel like I am rockin’ it as well, compared to so many. I feel like I still have a pretty good life, though the pain and symptoms still plague me daily, I have found peace with it, which amazes me, and I still find joy in my life. I am so afraid surgery could take this away from me. I have grown comfortable with the evil that plagues me, and I am afraid of trading it in for a different evil, with the possibility of surgery making me worse. I also feel like I cannot take the risk because I have three small children, and thankfully I currently am able to be a present and involved mom to them.

A patient in the United States

I’ve been leaking for almost 16 years. Had a sphenoid sinus leak that was successfully repaired with brain surgery and an anterior thoracic leak that has not been successfully repaired. Had 7 laminectomies and then a left-sided thoracotomy with a rib removal. That surgery was 10 years ago and after that one failed, I came to the decision that I would no longer pursue treatment. I hit an emotional wall and knew that I would fall into significant depression if I tried again. Instead I chose to focus on living with it instead of fighting it. If something comes along that seems to be very promising, I may reconsider. But otherwise I’m doing the best I can, with a leak. Once I allowed myself to stop, I really experienced peace. Now don’t get me wrong, I still feel very crappy, but I just keep going until I can’t-since I know I’ll feel bad no matter what.

A patient in the United States

I’ve stopped [treatment] and am living with the symptoms and being bedridden and housebound. It’s a different life, but I feel so much peace ever since I stopped. I’m not chasing anything anymore. I know I won’t get better anytime soon, so I’m accepting that reality rather than pretend it doesn’t exist.

Thank you to each of these patients for wanting to share their story with the world.

Abbreviations and glossary

Because this is a talk at a medical conference, I wanted to first put a list of the abbreviations I use within in it, along with some definitions of terms. If there’s a term you’d like added, please let me know.

• AA: Adhesive arachnoiditis, a debilitating condition characterized by persistent arachnoid inflammation leading to intrathecal scars and dural adhesions.
• CBT: Cognitive behavioural therapy, a type of psychotherapy
• Circumferential epidural blood patching: an epidural blood patch (EBP) that is done transforaminally, i.e. with a 360-degree coating of the spine. This means that the blood spreads / ‘gets’ to the front (ventral) part of the spine as well as the back (dorsal). Most EBPs are done using what’s called an interlaminar approach, but for leaks that are toward the front of the spine this can be ineffective as blood doesn’t spread to the leak site.
• CSF: cerebrospinal fluid
• Dura mater: sometimes just called ‘the dura’, is a thick membrane and the outermost of the three layers of the meninges that surround the brain and spinal cord. The dura keeps CSF is responsible for keeping in the CSF. A hole or tear in the dura allows CSF to leak out.
• Epidural blood patch: a procedure that uses autologous blood and sometimes fibrin glue (either alone, or together with blood) in order to close one or more holes or defects in the dura mater. Blood is injected into the epidural space.
• Iatrogenic: An iatrogenic condition is a state of ill health or adverse effect caused by medical treatment. A lumbar puncture is considered an iatrogenic cause of a spinal CSF leaks.
• LP: Lumbar puncture, a diagnostic medical procedure performed with local anaesthetic and aseptic technique. A needle is used to access the subarachnoid space and fluid collected. This is what caused my spinal CSF leak.
• PDPH: Post-puncture dural headache, is a complication of puncturing of the dura mater caused by low CSF volume / spinal CSF leak. While I personally dislike the use of the term ‘headache’ because it feels nothing like traditional migraine or other headaches and is instead a feeling of occipital crushing, medically headache is the term used, and as with other types of spinal CSF leak it is severe, and often involving the area where the head and neck meet, affecting neck and scapula as well as elsewhere in the body. cPDPH is a newer term, one used to delineate chronic PDPH. This is my type of spinal CSF leak.
• Pseudomeningoceles are abnormal collections of cerebrospinal fluid (CSF) that occur due to a defect in the dura surrounding the brain and/or spinal cord. They most commonly occur as a result of trauma or surgery and can result in a variety of local or distant complications.

Part 2 of this series, about the details of how I manage day-to-day, is coming soon. Thank you for reading.