https://www.infirmiere-canadienne.com/blogs/ic-contenu/2015/11/05/une-autre-forme-de-mentorat
Carolyn Sewell’s life changed because of a cerebrospinal fluid leak
Nov 05, 2015, By: Carolyn Sewell, RN
I have been an RN for more than 25 years. After an accident in 2011, I sensed something was wrong but couldn’t figure out what it was. I had no visible wound, nothing I could relate my symptoms to (headache, back pain and foggy thinking). Thankfully, I had a great family physician and an observant radiologist. While I was having a sacral MRI, the radiologist picked up that I had low-lying cerebellar tonsils and began to suspect a cerebrospinal fluid (CSF) leak. The confirmed diagnosis — a CSF leak in the thoracic spine — was not one I would ever have anticipated.
In the next two years, I had numerous epidural blood patches and a laminectomy and dural patch to seal what turned out to be a tear in the dura. On each visit to a physician’s office or a hospital, I asked questions and learned as much as I could from the experts. However, I discovered that I was not alone in my lack of knowledge; CSF leaks were not always well understood. Little Canadian research had been done, and no clear-cut treatment path was evident.
Our brain floats in a CSF-filled bag, which extends from the skull down the spine. A hole anywhere in the dura around the brain or spinal cord means CSF can escape. With decreased CSF levels, the brain may sag. Leaks can result from trauma or a medical procedure or occur spontaneously for reasons unknown. The technology to detect CSF leaks is improving, but the condition is still relatively uncommon.
The leaks cause a host of symptoms, including headaches (usually positional), neck pain, back pain, dizziness and vertigo, facial numbness or weakness, blurry or double vision, changes in cognition and memory, fatigue, and nausea or vomiting. Initially, in my case, the symptoms changed from hour to hour. The diagnosis left me feeling isolated and alone, but my family and friends were supportive and I tried to stay positive. As time passed, I started searching online for information and trying to assemble the puzzle pieces before me.
The most comfortable position is lying flat on my back because this allows for easier CSF flow around the cerebellar tonsils. I spend hours a day like this, trying to save my upright time for what I need or want to do most or simply recovering from being upright the day before. I operate at a much slower speed and find I’m playing catch-up in many areas of my life. This condition keeps my head spinning, in more than one sense.
Thanks to Facebook, I have found others like me; some have had the condition for years. We share glimpses of our struggles and our small triumphs. Some win the battle, others believe they’ve won — only to find that an epidural blood patch didn’t hold.
My nursing knowledge aided me in understanding my diagnosis; my personal experience made me aware of the destruction left in the wake of a CSF leak. It became important for me to find a way to get the word out about a condition that few nursing colleagues would have experienced or know about. But the task proved too daunting physically, mentally and emotionally. I started and stopped many times.
Last year, a well-known neurosurgeon said to me, “You know, we don’t know everything, right? But I’d like to help.” He asked me to describe my journey and discuss the knowledge I’d gained. That struck a chord. As a continuous learner, I have not been reluctant to say “I don’t know” because the other half of that statement, for me, has always been “…but let’s find out.”
His interest in me brought to mind an article in Canadian Nurse on the importance of mentoring and my earlier attempts to document everything I was going through and to share it with colleagues. It has taken years for me to be able to pull my thoughts together for this article and find workarounds that allow me to use a computer and write.
As for the point I wanted to make about mentoring? Although we are always learning and adding to our skill sets as nurses, we should ensure that we are also passing along to others what we already know. Maybe my knowledge and this story can help someone else.
Recommended resources
- Spinal CSF Leak Foundation
- Amoozegar, F., Guglielmin, D., Hu, W., Chan, D., & Becker, W. J. (2013). Spontaneous intracranial hypotension: Recommendations for management Canadian Journal of Neurological Sciences, 40(2), 144-157.
Carolyn Sewell, RN, has worked in a range of settings, including operating rooms, case management and community nursing. She is on disability leave.
#opinions#patient-experience#nursing-research