Patient stories
Connie Hanlan | Edmonton - AB
My name is Connie Hanlan and I have been dealing with a CSF leak for the last nine years, and my experience has been quite different from most cases.
I was a very active person. I used to race motocross dirt bikes, ride motorcycles, go sledding, ride quads—basically, anything with an engine, I would ride. I loved going skydiving, riding the carnival rides, and spending as much time as I could outdoors.
My leak began at home after finishing work one Friday night. I felt sick and went to bed, not thinking much of it. The next morning, I woke up with a severe headache and intense nausea. I felt so unwell that I had to call in sick to work. By Monday, I tried to return to work but ended up in the hospital, where I was diagnosed with vertigo and sent home.
The next day, still unable to walk, I returned to the hospital. Again, they told me it was vertigo and sent me home. By the third day, I could barely stand. I tried to take a step but collapsed, so I went to Edmonton to see my family doctor, who immediately admitted me to the hospital. Over the next three days, I underwent an MRI, CT scan, lumbar puncture, and even an iron infusion.
The following months were a blur of emergency room visits and doctor appointments, searching for answers. Finally, one day in the emergency room, a neurologist told me, “I think I know what you have.”
He referred me to his colleague, Dr Knash, who has experience treating CSF leaks. Doctor Knash started me on headache medication, and we proceeded with my first blood patch.
At first, the blood patches provided relief, sometimes lasting for 9 months to a year. However, as time went on and the number of blood patches increased, I experienced a few that didn’t work as expected. In fact, some actually worsened my CSF pressure, which I never thought was even possible.
In the meantime, to better understand my spinal fluid pressure, my doctor recommended a procedure to monitor my intracranial pressure. This monitor is inserted into your head to measure your CSF pressure. I was also the first person to ever undergo a blood patch while the intracranial pressure monitor was in place.
After losing my eyesight and hearing on my left side, I became very sick and bedridden. Fortunately, we were able to secure OOCHSC (Out of Country Health Services) funding from Alberta Health, which was a lifesaver. This funding gave, the opportunity to finally seek answers about what was wrong and how to treat it.
In April 2022, I went to Cedars-Sinai in Los Angeles, where specialized tests, targeted blood patches, and fibrin glue patches were performed. I then met with the neurosurgeon, who recommended trying another round of fibrin glue patches in Canada. If that didn’t resolve the leak, the next step would be a laminectomy with a dura reduction. The challenge was that no one in Canada had ever performed this dura reduction surgery before. Fortunately, Dr. DuPlessis in Calgary agreed to take on the procedure.
On February 15, 2023, I underwent surgery performed by Dr. DuPlessis, who skillfully reduced the size of my dura and secured it with aneurysm clips.
Since my surgery, my headaches have completely disappeared. However, I can still experience high pressure and headaches triggered by certain foods and drinks, particularly salt or caffeine. My vision and hearing have returned, though not fully, and I’m grateful to have regained most of it. While I continue to manage some nerve damage, overall, I’m incredibly thankful to have my life back.
I hope that by sharing my story, I can help others who are facing similar challenges. After undergoing over 50 blood patches and enduring countless ups and downs, I want to encourage anyone struggling with unanswered questions to seek medical advice as soon as possible. If my journey can help even one person or contribute to a deeper understanding of this condition, it will have been worth sharing.
Stay strong!
Connie