PATIENT STORIES
“Audrey (name is a pseudonym)” | Toronto - ON
I am a 53 year old female from Toronto, Canada and I am a CSF leak survivor.
My journey began while I was away on vacation in the Bahamas in March 2024. I was otherwise a healthy, active individual. During our week away in the Bahamas I played paddleball for the first time and also had a deep tissue massage, either one of which may have contributed to my spontaneous CSF leak. There was no obvious moment of trauma or pain that triggered it.
A day after my last paddle ball session and the massage, I developed what felt like a tension headache when we were at dinner. I took some Tylenol before bed and didn't think much of it. The next morning I woke up with the headache, which felt a bit worse and I also had interscapular pain deep in my left shoulder blade and up the left side of my neck. I assumed I must have pulled a muscle playing paddleball. Throughout the day my heachache progressively got worse, and by that evening I could barely function. I felt nauseated and the pain in my shoulder blade, up the left side of my neck and into the top of my skull was crushing. I could not sit through dinner or eat and ended up taking more Advil and going to bed early. I had some relief once I lay down.
The following day I had to fly with my daughter to her Grade 12 grad trip in Mexico. When I woke up my headache felt a bit better but worsened throughout the day, and I noticed my hearing becoming muffled. I suffered through a long travel day with a connecting flight to Mexico and went straight to bed once we arrived at the hotel. The next morning my headache was worse. The pain was debilitating and the interscapular pain in my left shoulder blade and up the left side of my neck, together with the pressure in my ears, was enough to bring me to tears. At this point I was panicking knowing something was seriously wrong as I couldn't sit upright for more than about 10 minutes before I had to lie down again to try to reduce the pressure and pain in my head, but it was agony to lie down with my shoulder blade pain. I continued to take headache pills to no avail and tried to lie with ice packs on my head, ears and shoulder blade to try to reduce the pain. I saw the hotel doctor who noted my eardrums were very inflamed when she looked in my ears, but she had no answers.
At this point I was very afraid to get on another plane given the pressure in my head and ears, but knew I had to get home to seek medical help. I somehow managed to get myself on a flight home to Toronto a day later and suffered through the flight with an ice pack on the back of my neck. I felt like I was ready to collapse from the intense pain in my head and ear pressure by the time I landed. I had to lie down in the backseat of the car on the ride home and immediately crawled into bed. Again, lying down gave me some relief.
In retrospect, I should have gone straight to the emergency room as soon as I arrived home. The next day, I went to see a doctor at a medical clinic in Toronto that I belong to and explained my symptoms, including the ear pressure and distorted hearing at this point, as though people were speaking to me through a tube. The doctor thought that it was likely Eustacian tube disfunction and sent me home with a nasal spray to try. I continued to remain in bed most of the day other than to sit up or get up for five to ten minutes at a time before it became unbearable. At this point, I was also suffering from some dizzy spells and an intermittent intense electric shock sensation wrapping from my left shoulder blade to under my left armpit into my chest, in addition to the crushing headache on top of my head and intense ear pressure with muffled and distorted hearing.
I managed to get a referral for a spine and brain MRI and was fortunate enough to have a neuroradiologist review the results who recognized what they were seeing and concluded a likely ventral or lateral dural tear and CSF leak. The MRI showed epidural fluid (or a spinal longitudinal epidural collection) in my thoracic spine region stretching down to the top of my lumbar spine, evidence of brain sag and subdural hygromas. I was suffering from spontaneous intracranial hypotension. Following my MRI results, I met with an orthopedic surgeon who advised that the condition was very rare and recommended conservative treatment first before undergoing any invasive interventional treatment. I was put on bed rest and told to stay hydrated and increase my caffeine intake to see if leak would heal itself, as some do based on the research. I remained on bedrest for almost two months.
I did a lot of online research about my results and CSF leaks, reading medical studies and published papers, mostly from the United States, as I had not heard of the condition before my diagnosis. I also found other CSF leak patient stories online that spoke of many different outcomes and journeys. I focussed on meditation to try to manage my pain and work on self-healing, becoming hyperfocused on everything that was happening in my body. While the positional orthostatic headache and interscapular pain improved somewhat over the course of my bedrest, the ear pressure, distorted hearing and sporadic dizzy spells continued.
I did some further investigation and eventually met with Dr. Phillip Peng at Toronto Western Hospital, who has years of experience treating CSF leaks. During my consult with Dr. Peng he noted that spontaneous leaks such as mine don't typically fully heal on their own and he recommended that I undergo a non-directed blood patch procedure to try to repair the leak. He was pretty confident from reviewing my MRI results that he could reach the area in my thorasic spine where he suspected the leak was. Dr. Peng was very knowledgeable about CSF leaks and gave me great comfort and hope that he could help me. I had a non-directed epidural blood patch procedure done by Dr. Peng in May 2024 and it was successful. Dr. Peng had noted before the procedure that I may experience a rebound hypertension headache for a period of time after the procedure, as a result of the volume of CSF filling up in my head again once the leak is sealed. Throughout the procedure I communicated with Dr. Peng to let him know how and what I was feeling. I noted feeling intense pressure again on the top of my skull; this was a good sign as it meant the procedure had worked to seal the leak. I had to lay flat for the next 24 hours to allow the blood patch to clot, and then slowly over the following 48 hours gradually started to start to sit up and stand up. Given I was now suffering from a bad hypertension headache when lying down, all I wanted to do was sit up to relieve the pressure in my head. They managed my hypertension headache with medication and monitoring while I was in the hospital, and I continued taking the meds for the hypertension for less than a week after I was released before it improved and I was able to lay flat without the intense headache. I was still having issues regulating my ear pressure and constantly had to yawn to try to "pop" my ears. I had a follow-up with Dr. Peng 3 weeks later and noted that I was feeling well with no further headache or interscapular or neck pain since the blood patch procedure; however, I was still having trouble regulating my ear pressure. He noted that this was not uncommon and that it could take between three to nine months to improve.
I have slowly been getting back to my daily life again. I started with light physical activity such as walking, and am now undertaking a more moderate level of physical activity, listening closely to my body. I am just taking things day by day.
I am still on my healing journey. I am still having issues with ear pressure regulation and hear low base tone frequencies more intensely than before my CSF leak. I also notice a bit of tinnitus - like an electrical power line sound in my ears at night when I lie in a silent room. Given these symptoms seem to have improved over time, I am hopeful they will fully resolve at some point....but time will tell. I have a follow-up MRI booked for six months post-procedure to check that all CSF leak-related findings from my original MRI have resolved.
I am so very grateful to all who have helped me in my CSF leak journey and the quick diagnosis that I received, as I know from reading others’ stories that this isn’t often the case. I consider myself very lucky! My heart breaks for those who continue to suffer from this debilitating condition, as well as for their loved ones whose lives are also profoundly impacted. I pray I never have to experience it again. I wanted to share my story to provide others with information and hopefully help spread further awareness about this condition. I found any information helpful when I was going through my CSF leak in trying to understand symptoms and what treatment others had tried.
Although very few, there are some doctors in Toronto who are knowledgeable about CSF leaks and who are noted on the Spinal CSF Leak Canada website. We need more doctors in Canada to become knowledgeable about the symptoms and treatment of CSF leaks, and expertise needs to be developed on an interdisciplinary basis, including neurology, otolaryngology and ophthalmology.