This is my personal journey of dealing with a spinal CSF leak, from the initial incident to recovery.
Key Points
Initial Incident: The spinal CSF leak likely resulted from a minor car accident, exacerbated by bone spurs on the spine, leading to severe pain and other symptoms caused by a hole in the dura, leaking cerebrospinal fluid and causing my brain to slump.
Early Symptoms: The initial symptoms included severe neck pain and a migraine-like headache, which worsened over time, limiting the ability be upright.
Misdiagnosis and Worsening Condition: Initial medical consultations led to misdiagnoses and ineffective treatments, including a CT scan that showed no issues, and a treatment by an osteopath that worsened the condition.
Correct Diagnosis: After numerous consultations and an MRI, the correct diagnosis of a spinal CSF leak was made, but it took persistence and further imaging to confirm.
Hospitalisation and Blood Patch: I was eventually hospitalised, undergoing a blood patch procedure and a myelogram, which provided temporary relief but did not fully resolve the issue.
Support Group and Experienced Specialist: Through a Facebook support group, I found an experienced neurosurgeon in Sydney who successfully identified the leak source and performed surgery.
Recovery and Outcome: Post-surgery recovery was challenging, but eventually, I returned to an active lifestyle, with occasional minor symptoms reminding me of the condition.
The Spinal CSF Leak Journey Story
Before
Just prior to my spinal CSF leak I led an active life. I had just finished a 250km charity bike ride whilst training for a triathlon when I was in a fairly unremarkable car incident. A turned head, a car that stopped suddenly and, unbeknownst to me, bone-spurs (osteophytes) on my spine damaged the dura in my thoracic spine which led to cerebrospinal fluid to leak resulting in many months of pain, frustration, medical gaslighting and despair. Not to mention the enormous amount of money and time spent on medical appointments, imaging, flights, accommodation and help at home.
During
Although the initial incident caused my neck to hurt, it wasn’t until the early hours of the morning, about 8 hours later, that I woke with a very severe pain at the base of my skull, like the worst “migraine” I’ve ever had. The pain was dulled with over-the-counter pain medication and an icepack, enough to get back to sleep at least. However, it all went downhill from here. Over the next few days, the pain grew increasingly worse and my ability to stand up for any period of time was limited. With worsening pain and diminishing tolerance to be upright I went to see the first GP I could get into. I couldn’t even sit upright in the waiting room. The GP at this visit suggested that I get a massage. I booked into an osteopath who basically made my situation worse. Tinnitus kicked in, like a pulse beating in my head and my hearing started to go.
My usual GP sent me for an MRI focusing on the neck to locate signs of trauma, looking for a fracture in my neck. Once again nothing was picked up so I resigned myself to the fact that there was nothing that could be done. The severe pain and upright tolerance started to improve, however, the tinnitus and hearing loss worsened. After lots of searching online (as one does when they are unwell and needing answers no physician can give) I found an audiologist who specialises in tinnitus. The audiology room was torturous as it was so quiet, yet to me, so loud. I had significant hearing loss in one ear and moderate hearing loss in the other ear. I was then referred to an ENT.
When All You Have Is a Hammer, All You See Is a Nail.
On reflection, this is the problem when it comes to a reasonably rare condition. Firstly, a spinal CSF leak is not common – although most likely underdiagnosed or misdiagnosed as migraine (and other conditions) – many doctors are unaware of a spinal CSF leak presentation. Secondly, I was at an ENT, so they are looking for conditions that they specialise in and are in their diagnostic toolbox. After a physical examination I was sent for another MRI, this time of the brain. I managed to obtain a copy of the report, which clearly stated “signs of intracranial hypotension”. The report recommended “a full-brain and spine MRI with contrast”. After a bit of research (every patient’s best friend, Dr Google), all the clues started to come together: I had a spinal CSF leak. You would think that this light-bulb moment would be the light-bulb moment for the physician, but no, I was told that the intracranial hypotension wasn’t relevant, and that the imaging company was just “looking for more revenue” and not to bother getting another scan. Not one to back down, and really quite desperate, I said I was more than happy to pay for the scan. This scan confirmed what the first scan had found – signs of intracranial hypotension. No one appeared to know what to do with this information and to say that I was anxious about my health was an understatement. I knew there was something wrong with me, so I took myself off to the local private emergency room in sheer desperation and fear.
Hospital & blood patch
It took hours and hours in the ER gently trying to hint that I could have a spinal CSF leak before the ER doctor consulted with the hospital neurologist. I was fearful that the emergency doctor didn’t know what a spinal CSF leak was, as they doubted that I could have one because I had not had a procedure/surgery or been in a major car accident. After another MRI late that evening I was admitted to hospital and booked in for a epidural blood patch (EBP), a standard treatment for a spinal CSF leak. I felt relief that I was finally going to be fixed. The following day, under the care of a neuroradiologist, blood was taken from my arm and then injected into the epidural space. Although it’s not entirely certain how a blood patch works, this is the standard treatment for a spinal CSF leak. An EBP is often successful when there is a needle injury from an epidural or spinal block. I have now learnt that blood patching is likely to be ineffective for damaged anterior dura in the thoracic spine caused by a bone spur. This fact didn’t reveal itself until months later. When, under the care of a neurosurgeon in a different hospital I got a myelogram and another blood patch. After this procedure I was put on 72 hours bedrest with my head down 10 degrees, known as the Trendelenburg position. This hospital stay and treatment appeared to help, for a while. About a month later I thought I was fully better and started being more active, going for walks and partaking in other activities. It was on a walk up a mountain that I felt something change. I can’t describe this accurately, only to say I knew things were not good. Still trying to pretend that I was ok, I kept going, doing what I could, but it was clear that I was going backwards and that the problem had returned. I was “re-leaking” and felt crushed.
Facebook Support Group – Hope and Information
Through many online searches, I found a group on Facebook called CSF Leakers DownUnder which was like a light at the end of a long dark tunnel. It was here, in a community of people who had experienced a CSF leak or were looking for answers to their symptoms, I discovered there was a neurosurgeon in Sydney who has specific experience with patients with a spinal CSF leak. In Sydney I had another myelogram with an experienced neuroradiologist who, unlike the first neuroradiologist who does about 3 a year, this doctor did at least 3 in any one session. With the clues from the first myelogram he zeroed in on the bone spurs in my thoracic spine and identified the likely source of the CSF leak. The following week I was booked in for surgery. Hearing that a leak had been found and there was treatment was like hearing I had won the lotto. The relief was intoxicating. I couldn’t be more (hesitantly) joyous.
Spinal CSF Leak Surgery
The skill and precision of the surgeon were incredible. Surgery required to “patch” the dura required a bone to be removed from my back, called a laminectomy. Then the dura was sliced open, and the spinal cord moved out of the way to allow the inside of the dura to be lined with muscle fascia and glue. The operation took around 3 hours. However, recovery from surgery, for me, was brutal. I had a reaction to the post-surgical drugs, which has been described to me as something like akathisia. If there were a button next to me that said “Die Now” I wouldn’t have thought twice about hitting it (sorry family 😔). I will never forget those days at the hardest of my life. After 8 days in hospital, I flew back to my home in Brisbane to recover and be reunited with my beautiful children. The impact on them had been profound, thinking that they might lose their mother.
Post Surgery
It took a couple of months to start to feel like the surgery was successful, especially the first few weeks. I learnt about a condition that can happen after surgery called rebound intracranial hypertension (RIH), too much CSF production/retention! Fortuitously, I was given a script to deal with this should it occur and through the Facebook community I learnt other ways of dealing with this potential complication, such as drinking dandelion leaf tea, taking vitamin B1 and avoiding caffeine. The recovery was difficult and confusing, however, day by day I slowly felt better.
Recovered
On the third-month anniversary of my surgery, I took my bike to a flat criterion and rode 20km – one of the most thrilling rides I have ever done. I knew from this point that I was going to be okay! (despite experiencing weird head pressure for at least the next year when I shifted positions, such as sitting down to standing up). Today, several years after the surgery, I continue to live as though I never had a spinal CSF leak, except in the back of my mind there is a niggling thought that it could reoccur one day. But at least now I will know exactly what it is from day one.
I feel privileged every day of my life that I no longer have a CSF leak. I want to improve the pathways for others with this condition, which is why I started the Spinal CSF Leak Australia charity.
