TASHA H. MD - East Kootenays, BC
My CSF (Cerebrospinal fluid) leak story dates back to October 24, 2019, when I had a surgery to remove a benign spinal tumour, and my life was turned upside down. Prior to the tumour diagnosis, I was a happy mother of two young children, an ER doctor, and an enthusiastic adventurer. I lived for skiing, surfing, mountain biking, yoga and more. I went from living a full, joyful life, to being mostly couch-bound and in pain for over one and a half years. While trying to heal, I have avoided most activities that stress my dura, including all sports, and simple things such as tying my shoes or loading the dishwasher. The most heartbreaking thing for me has been not lifting my children over the last few years.
To understand why I developed a chronic leak, my tumour backstory is significant. At the age of eleven, I developed sciatica down my right leg, which persisted throughout my life. I attributed it to a tobogganing accident at that age, and since it was always managed with yoga and massage, I never pursued imaging for it. In June of 2019, I had a c-section for my second child, and with that I had a spinal anesthetic. A few weeks after the birth of my son, my unilateral sciatica turned bilateral. I knew this was a “red flag” sign, so I had an MRI which revealed a tumour on my S1 nerve root. The tumour was benign, a Schwannoma, and had likely been growing for over twenty years based on how it was remodelling the bone in my sacrum. My theory is the tumour started as an inflammatory process from my initial injury.
Once I found out about the tumour, I still wondered what was causing my bilateral symptoms. The tumour was on the S1 nerve root as it exited the spinal canal (extra-dural but pushed up against the dura), and I now had pain on the left. I also had major burning in my feet, and back pain and pressure that was okay when I was lying flat, but was awful upon standing. Upon further research, I found a diagnosis called Adhesive Arachnoiditis (AA) that fit my symptoms exactly. When I asked the neurosurgery team if this could be what I had, I was told “No that is super rare”. When I told the neurosurgery team that I had developed headaches, neck pain and tinnitus prior to surgery, it was dismissed. I was told I had an arachnoid cyst that was causing my bilateral nerve pain. I trusted the team so decided to stop researching as it was only causing me worry. In hindsight I had the classic findings of AA on my MRI, and that “cyst” was a pseudocyst that can form due to adhesions within the spinal canal (1). My headaches, neck pain, and tinnitus were from blocked CSF flow, a common symptom in those with AA (1). The AA had started either from the spinal anesthetic, or the tumour pushing on my dura as my ligaments tightened around it in the postpartum period.
On the day of my surgery, they took out my tumour successfully. They also opened up my dura to explore the “arachnoid cyst”, however once in there it was noted I did have adhesions and scarring in keeping with AA. They then lysed some of the adhesions, which I learned later isn’t great when you are still in the inflammatory phase of AA as I was (1). AA was a devastating diagnosis to receive. It causes inflammation and scarring of the nerves, and is deemed incurable. The nerves adhere to each other and the dura, acting like sticky spaghetti, wreaking havoc in your spine. If adhesions are lysed in the inflammatory phase, they often come back worse than before (1). AA is also often accompanied by a break down of the arachnoid-dural lining, and CSF leaks are not uncommon in AA (1). I didn’t know all of this at the time.
Post operatively I did as they told me to do the first day and stayed flat, however as I slowly came upright I told them I had a headache. At first they told me to go back to flat, but after multiple attempts to be upright and repeatedly telling them I had a headache upon standing, I was told it was a normal post-op headache and that it would get better. I had severe head pain on the four hour ride home, but I had hopes that if I laid flat for a few weeks it would get better. When it didn’t resolve I had another MRI which showed a pseudomeningocele (a contained collection of CSF outside of the dura). The team advised me it wouldn’t heal on it’s own and I would need more surgery.
Two weeks after my first surgery I headed back to the city where I had my first operation, and had a dural repair done. It was done with a resident assisting, as an add-on case at the end of the day. They opened me up and saw that my dura was thin, fragile, and weeping CSF. When they tried to place sutures, my dura just tore, so they decided to place a fibrin patch. When the fibrin patch still had oozing around it they placed a lumbar drain at my L3/L4 space to divert fluid in hopes of helping me heal, and had me lie flat for five days.
That hospitalization was a nightmare for me. The first night I was drenching the sheets with CSF. In addition to a horrific headache, I truly feared for my life. Was I going to develop subdural bleeding because of so much fluid loss? Was I going to develop infectious meningitis? After pleading with the nurses multiple times that I needed physician attention, I finally saw the neurosurgery fellow six hours after I first noted the abundant leaking. That was the longest six hours of my life. I required two different purse string sutures, to stop my drain from bypassing. They couldn’t understand why I was bypassing the drain, and behaving like someone with high pressure. From what I’ve come to understand with AA, there is blocked CSF flow from the scar tissue, and often high pressure and excess intra-spinal CSF fluid occurs (1). At that time I wasn’t fully aware of that and neither was my team.
After the five days of lying flat, with the drain now removed, I still had headaches upon being upright. I went to our rental place for about a week and when the symptoms persisted we decided to do a blood patch. I was readmitted to the hospital for five days and had a high volume (30 CC) blood patch, non image guided. The anesthesiologist tried a patch at L3/L4, because the thought was I was possibly leaking from the drain site. He encountered a large hematoma at that site, so he put the blood in at L4/L5. It was a rapid injection and I had the worst head pressure and right leg twitching upon blood entry. The following days I experienced what I believe were high pressure and inflammatory headaches, as I had headaches both when flat and upright. I had flashing lights appearing around my eyes, and I had burning pain and stiffness up my neck. Unfortunately, blood had entered my intrathecal space and I had symptoms of chemical meningitis. Since then I have had AA symptoms up my whole spine, likely caused by that blood. In addition to that I still had worse headaches when upright. An MRI done at the end of that hospitalization showed a persistent pseudomeningocele/CSF leak.
We decided after all of that, it was time I headed home to try an attempt at self-healing. The first few months home I felt truly broken. I had never really dealt with any sort of mental health issues, and at that time I felt depressed, traumatized, scared, helpless, and weak. As hard as it is for me to admit, there were many nights I would have been okay not waking up. Having young children and experiencing those thoughts, was truly devastating. I spent the first few months totally flat, except for showers and the occasional meal. My headaches were debilitating for a long time and included other bothersome symptoms such as blurred vision, a hoarse voice, tinnitus, and neck and arm pain. I reached out to the expert CSF leak centres in the U.S., and it took many months to hear back, which only added to my hopelessness. Add a pandemic to the mix, and more difficult access to care, and I felt so discouraged. But as the days and months passed, I put in a lot of work towards my mental health and healing, and I slowly got better. I meditated daily, and changed my mindset to one of healing and gratitude.
During the one and a half years I have been self-healing, there have been a lot of ups and downs. It was confusing knowing which direction to take, as self-healing isn’t really something that is studied or discussed. I have been fortunate to be under the care of the headache specialist in Calgary, Dr. Amoozegar, however I also reached out to the U.S. expert leak centres Duke, and Cedars-Sinai, and the advice from all three was different regarding further intervention. To add to the confusion my repeat MRI in January 2020 showed a persistent fluid collection near my surgical site, but a repeat MR Myelogram in May 2020 did not show the leak. I also have never shown signs of intracranial hypotension on my imaging. It isn’t uncommon to have a leak and it not be seen on MRI, but that meant I either required a CT myelogram to identify it, and/or a blood patch or surgical treatment, which both could really aggravate my AA. Any further irritation to my spinal canal could potentially leave me in a really bad place. There have been cases of people developing AA from the investigations or treatments for CSF leaks.
With all of the uncertainty, I have stayed the course on my self-healing journey, while never fully writing off further intervention. Between different types of counselling, healers, herbs, supplements, peptides, stem cells, and functional medicine, I have tried a huge variety of things (for the AA and CSF leak), and spent a lot of our savings along the way. After all of that, I am not where I want to be, but I am sure better than I was right after my surgeries. I am now able to spend larger amounts of time upright. My head still hurts with pressure changes, and I experience high pressure and low pressure symptoms daily. I also deal with pain from the AA at all hours of the day. But I am still hopeful I will return to work, and I am thankful I am able to experience more of the joys of life with my family. I am also hopeful that I will be able to return to some of my beloved activities eventually. I plan on continuing my self-healing trial until the fall of 2021, and if not better by then, I will pursue further invasive imaging and treatment.
The diagnosis of the tumour started my journey of truly understanding what it is like to be a patient. As a physician I have experienced some perks along the way, but I have also experienced what it is like to be dismissed and have details overlooked or ignored to my detriment. I love conventional medicine, but the system is deeply flawed, and there are many blind spots we aren’t aware of as practitioners, unless we ourselves or a loved one experience them. This has indeed been a learning experience for me on so many levels.
My story is from my perspective, and I know what it is like to be a physician making the decisions you feel are best at the time. Many of the decisions made in my case were shared. I also note I am not a CSF leak or AA specialist, though I have done a huge amount of learning on both since my diagnoses. With those things acknowledged, I want to highlight certain aspects of my care that I have wondered if done differently, perhaps would have led to better outcomes for me. Firstly, I wonder if my team would have recognized the appearance and implications of AA, perhaps my fragile dura would never have been opened in the first place, and my inflammation and adhesions may not have worsened. I wonder if I would have tried to self-heal after the first surgery, instead of taking the advice to have a second surgery, perhaps my AA and leak would already be better. I think about if they would have used Diamox, a CSF pressure lowering medication, instead of drain in my second surgery, I wouldn’t have experienced that traumatic CSF drain experience and worsening of my AA. I wonder if my second surgery was done with another attending neurosurgeon assisting instead of a resident, perhaps my repair would have been done more effectively. I not only wonder but know, if I had not had that blood patch post op, that sent blood intrathecally and up my spine, I likely wouldn’t have AA symptoms up my whole spine. Finally I wonder if I would have had more immediate medical attention when my drain was bypassing all over the bed, perhaps I wouldn’t be so apprehensive about further medical care. Of course decisions were made by all parties to the best of our abilities at those times, and one can only try to look forward. I do hope by questioning some of these decisions, and by making them public, this may provide patients and practitioners extra pause when confronted with a similar situation.
My heart goes out to anyone experiencing the suffering that comes with having a chronic CSF leak. There is an immense grief experienced daily, around the loss of so much and the unknown of when and how much you will get back. This is truly much harder than many other injuries I’ve had in the past where physical hard work and rehab got me to my healing goal. The mental strength it takes to lie flat for hours on end, is so much more difficult. I am hopeful sharing my story as well as what I tried for self-healing, can help others. Though I haven’t fully healed using my strategies, I feel my case is complex, and I think there is the possibility something I tried could help fellow CSF leakers heal with non-invasive measures. I plan to share my list of strategies on the Facebook CSF leak group soon. My hope for the future for those with CSF leaks, is better access to multidisciplinary care, and better non-invasive imaging for leak detection and treatments. Also, it would be amazing if Canada were to have a specialized centre, just as the U.S. does.
A huge thank you to my amazing husband and family, I wouldn’t be making it through this if not for you. And to the friends that have been by my side whether literally or figuratively, I send you love for your compassion and support. Thank you to the health care professionals who have shown me empathy and kindness in my time of need. Finally thank you to the Spinal CSF Leak of Canada Foundation, for encouraging me to share my story, and for all you do to raise awareness for this rare and debilitating condition. To those still suffering, please continue to advocate for yourselves, as I’ve learned over and over again through this process, patients really are their best own advocates.
Reference: Aldrete, Antonio. Arachnoiditis: The Evidence Revealed. San Rafeal, Editorial Alfil, 2010.
