Transcript
Hello, and thank you to the Spinal CSF Leak Foundation for having me speak at this conference. As stated in my bio, my name is Tasha, and I am an ER physician from Canada. I hope we all walk away from today with a greater understanding of spinal CSF leaks, both from the patient and healthcare provider perspectives. I’m sorry I cannot attend in person.
I’ve been asked to speak about my own experience with the CSF leak and the challenges I faced with diagnosis and treatment. I will discuss my perspective as a patient and a physician and how this has informed my personal and professional life. I will also touch on what I think medical education is missing in regards to CSF leaks. I will also have a few slides midway through my talk – documenting my journey as well as talking about things I use to self-heal.
What I hope patients take away from my talk today is how beneficial perseverance is, whether it’s persevering to live the best life you can with the symptoms you have or persevering to get a diagnosis and treatment. I believe you can achieve a better quality of life. What I hope healthcare providers take away from my talk is how important humility is in listening to your patients. I believe this is sometimes a missing key when dealing with difficult and rare diagnoses.
So, my story. Prior to June 2019, I was an active and adventurous person. I worked as a full-time ER physician. I had a 21-month-old daughter, and I was pregnant with my second child – my son. I traveled multiple times per year. I enjoyed activity in life to the fullest – free time spent skiing, biking, surfing, kiteboarding, running, and doing yoga.
In June of 2019, my life took a turn. Two weeks after the birth of my son, I developed bilateral sciatica – so, pain down both of my legs. I did have a C-section and a spinal with that birth. This was worrisome. I had always had symptoms on my right, and I attributed that to tight muscles, but when it developed on the left and became severe, I had an urgent MRI.
The MRI revealed a benign tumor called a schwannoma on my S1 nerve root, and it had been growing for quite some time based on the MRI findings. The tumor on the right explained my right-sided symptoms, but it did not, however, explain my left. In addition to the pain, I had other weird associated symptoms such as burning feet, nerve fasciculations down both legs, which is constant twitching, and pain that was much more severe when I was upright.
After some research, I found my symptoms fit with a rare condition called adhesive arachnoiditis – that I will refer to as AA. I had never heard of this before, and it is a devastating, painful condition characterized by inflammation of the arachnoid meningeal layer, which can lead to intrathecal scarring and adhesions. At its most severe, people can lose function of their arms, legs, bowel, and bladder.
When I met with my neurosurgeon to discuss tumor removal, I told him I wondered if I had AA secondary to this spinal of the C-section and my tumor. And he said, “No, it’s an arachnoid cyst. That condition is far too rare.” That condition is far too rare. In hindsight, I did have the findings on my MRI of AA.
My tumor removal surgery was four months after the birth of my son and the discovery of my tumor. Immediately after, I was quite happy. I had preserved function in my right leg, which they weren’t sure they could preserve.
However, they did confirm I did indeed have AA, likely caused by my spinal and tumor. Subsequent MRIs confirmed this diagnosis, as well as tethering of my distal cord and cauda equina. I figured I could deal with the AA diagnosis, but little did I know I would have a much more difficult road ahead than just dealing with the AA.
I lay flat for the first 24 hours post-surgery. But anytime I got up, I had a horrible headache. After a few days of bed rest, despite still having the upright headache, I was sent home, 4 hours away, to try to self-heal. After 2 weeks of still having the headache, an MRI confirmed I did have a post-op spinal leak. I returned back to the same hospital and had another surgery by the same neurosurgeon, with a resident, to repair my dura. They opened me up and saw that my dura was thin and weeping. They tried their best to repair it and placed a lumbar drain above it to divert the fluid, and that stayed in for 5 days while I lay flat.
Unfortunately, despite that, I did not heal my CSF leak. A week or so later, they did a large volume blood patch. I had intense head pressure while that blood patch was happening, and in the days following, I unfortunately had chemical meningitis from the blood entering into my thin dura. I couldn’t sleep at all due to the inflammation. I saw intense flashing lights around my eyes when I closed them, and I had severe burning pain from my head down through my back no matter which position I was in. The blood entering the intrathecal space subsequently led to AA throughout my whole spine.
I want to mention I experienced significant medical trauma over the weeks I was at the hospital. I cannot detail it right now, but I just want those of you who have also experienced this to know I see you, I relate to you, and it took me years of personal work to overcome that.
Following my failed blood patch, I was sent home with a referral to a headache specialist. In the weeks and months following, I was a shell of a human being. I had insomnia due to all the neuroinflammation. I couldn’t stand up or sit down without a severe headache, nerve pain, back or buttocks pain. I remember feeling as though my case was impossible to heal. I had too much scar tissue in some areas and not enough in others. The inflammation and scarring were eating away at my spinal tissues, including my dura.
It was more difficult than I can even put into words. To have young children that I was unable to care for or partake in many aspects of their lives was heartbreaking. I had never really struggled with my mental health except for the normal ups and downs, and I remember feeling utterly broken and hopeless. Many days and nights I cried myself to sleep, and there were nights I wished I wouldn’t wake up, and that was devastating to me and my family.
I spent the first few years post-surgery flat. I did a lot of research about self-healing. I meditated, and I tried to be involved in my family’s life in whichever way I could. During my journey, I was lucky I had amazing support from my husband, family, and friends. My husband tried at every moment he could to include me in what he and my children were doing.
These years of my journey highlight just how hard it is for us leak patients to get a clear diagnosis and treatment and how important it is to persevere. I reached out to many leak specialists and did as much research as I could. After a few months, my repeat MRI showed no signs of a CSF leak despite the clear leak symptoms, so it made the path forward much more difficult. I was offered a CT myelogram, but I hesitated as I really did not want to make my AA worse with any further tampering in the spine – it can really flare the disease.
While I sorted out what to do, I connected with fellow CSF leak patients and AA patients, and we supported each other in our pursuit of healing while also managing living with the unknown.
Many leak patients have concurrent diagnoses, and we often have extra difficulty in a condition that’s already difficult to diagnose and treat. This was a big part in me pausing in further diagnosis and treatment. I had AA, a spinal CSF leak, a tethered cord, venous outflow issues from my skull base being pulled down from all the tethering, and I also developed mild histamine intolerance. Getting a diagnosis in Canada is even more difficult, and treatment, as cross-provincial care is hard, and we have few specialists that actually understand spinal CSF leaks.
Getting treatment in the States at specialized leak centers can feel like winning the lottery. Through continued perseverance and trying a plethora of different healing techniques and symptom management, I got to a place where I was able to be upright longer with less CSF leak and AA pain.
A turning point for me was an appointment with a US leak specialist who affirmed how difficult my case was and that I could be leaking from any one of my adhesion points. I felt validated by that doctor as he acknowledged my AA and how it was likely contributing to my persistent leak symptoms. It gave me the courage to tackle my condition in a more aggressive way, and I did go about breaking up scar tissue and adhesions – which did make my leak symptoms worse at some points – but I do feel ultimately it made way for better blood flow, oxygen, and nutrient delivery to my spine, and improved healing and less pain.
So, I just wanted to share a few photos of my journey. This is me pre-leak skiing and just after the birth of my son with my family, an MRI of my tumor, and me during one of my many days flat in the hospital. Here’s my position for a few years, as well as a painting my brother dedicated to me in my healing journey, called “Tasha Tree Heart”.
Here’s a list of some of the things that I tried – and some that I still use. I contemplated whether or not to include this list but decided I wouldn’t be telling my truth if I didn’t, as many of these things helped me in my healing, and I wouldn’t have been successful without them. Some disclaimers: this is not to be taken as medical advice. Please do not try anything on this list without the guidance of a knowledgeable practitioner, as it could have dangerous effects. Some of this has evidence towards its intended use, and some of it does not. And patients, please do not contact me in regards to medical advice for this. I would be happy to talk to practitioners if they do have any questions, and my hope is that some of this would actually be studied as sort of non-invasive ways to help with leaks. I put a star beside the treatments that worked best for me. A lot of these have overlap – but I put them where I felt they’ve worked best. Disclaimers aside, it feels very vulnerable for me to share this, as I know alternative medicine is frowned upon by many in the conventional medical community, and I do understand that. In my practice as an ER doctor, I love evidence-based medicine and study and practice it on a daily basis.
I’m also so appreciative of the research and advances done with CSF leaks. However, because our condition is rare, there is overall much less research compared to other conditions. I also have AA, which means most of the diagnosis and interventions could make me worse, so I took matters into my own hand. I approached my healing from every angle – emotionally, spiritually, functionally, and going for the root cause of issues. I became a lab rat – an N of one – and I tried anything that could help with inflammation, pain, scar tissue, CSF pressure issues, and, most importantly, tissue healing. Daily, I still use healing modalities and take supplements and medications to help with these. I believe in the effectiveness of what I tried, and I feel we in conventional medicine are missing out on many powerful treatments. I don’t have time to go into detail on this and also don’t have time to explain how I know what the effects are of these treatments, but just know that when you lie with your body for years, as well as meditate, you develop quite a close relationship with your body and your symptoms. With all of this, I want to acknowledge that I come from a place of privilege – being able to go on disability while I healed and being able to afford many of these things. In addition, my medical knowledge helped me understand a lot of these treatments.
So that brings me to present day. Over the years, I’ve gotten incrementally better. At just over the 2-year mark post-leaking, I went back to work in a busy ER. I probably wasn’t ready physically, but mentally and emotionally I was, and I didn’t want to lose my career. I also feel returning to work really helped with my healing. With persistence and perseverance, I’ve come to a place where I believe I’m likely an intermittent, fluctuating leaker. I fluctuate between high and low pressure – it seems. Sometimes, it is difficult to tell. Even though I’m in tune with my body, I sometimes also wonder if possibly I have a fistula, and that’s why I haven’t fully been able to heal. But, you know, overall, with the breakdown of adhesions and the buildup of healthy tissue, the CSF leak and AA pain have greatly improved.
I can ski again, mountain bike on an e-bike, lightly jog, and I’ve been able to travel. While I don’t necessarily advocate for patients to push through their symptoms – and I do worry I may be harming myself and causing long-term damage – I also feel so happy to live a full life again, even if I struggle with pain. It is still daily work trying to maintain my health and lower pain levels. And while I do improve, I’m hoping medicine can advance to a place where we have less invasive diagnostic ways as well as treatments.
So, how has my perspective changed as a physician, and how has this experience influenced how I practice medicine? Directly I am better at educating patients on the risks associated with lumbar punctures and spinal procedures. I advocated in my own ER to get longer, non-cutting needles, as we only had short ones. I sent a concerned email to an emergency medicine podcast when their top critical care doctor stated he only uses cutting needles for all patients. I’ve educated those around me regarding chronic CSF leaks and AA. I ask all headache patients about whether or not their headaches are positional, and I have directly helped many patients with probable CSF leaks navigate the healthcare system and doctors who dismiss them. I also try to acknowledge healing in a way that is more holistic, and I acknowledge that medical trauma is real and it needs to be addressed. Above all, I try to incorporate humility into my practice of medicine and my life.
And this is my biggest takeaway for practitioners – the experts here will teach you all about the clinical aspects of CSF leaks. While I wish this was taught better in medical school and residency, what I think would make the most impact is if we did a better job as a profession at practicing humility and with that, listening to our patients. I believe reaching our highest potentials as physicians and healthcare providers is balancing our pride in our craft with acceptance of our fallibility. We must maintain balanced perspectives on our abilities while also staying open to learning and collaboration. If medical school and training could help foster an environment where this balance is amplified, we may produce future generations of healthcare providers with experience in practicing with humility.
And this is not pointed at anyone in particular. I’ve seen so much compassion and humility in the care providers for our population. However, in my experience as a physician, I’ve seen many times patients dismissed by care providers when things just don’t make sense. Many of the leak patients I’ve helped have been working to get help for months and years. I know, as physicians, we have many challenges, including time and systemic constraints, and we’re doing our best. And I recognize that with my team. Though, we can always strive to do better and remain humble and open.
In conclusion, I hope you can see that with perseverance, you hopefully can live a better life. I’m 5 years out and still working hard at my health. For healthcare providers, I hope we are able to maintain an openness and humility within our own practice, as I feel it can serve the leak community and greater patient population as a whole. Thank you again for having me speak at this conference. Though my experience was and is still difficult, I’m grateful for all that I have learned, and I’m happy to have shared some of that with you all. Thank you.