A Glimpse into the Life of a CSF Leaker

Connie Rim

I became ill with a cerebrospinal (CSF) leak, and it has taken years of waiting while neurosurgeons from all over the country have been consulted to find answers. During a routine cervical laminectomy and fusion, my dura (outermost layer which holds the fluid which cushions your brain and spinal cord) was no longer stabilizing my pressure and causing a host of physical, neurological and cognitive dysfunctions  

My leak is rare but many of my symptoms are rare as well. Typical symptoms are head and neck pain, tinnitus, positional head pain, dizziness, inability to withstand sound or light, and nausea. My atypical symptoms are  my inability to walk, stuttering/slurring, confusion, aphasia, constant head pain, myoclonic jerks, visual disturbances, neurological and cognitive dysfunction and so much more.

At the time I was diagnosed with a CSF leak, a Google search only rendered results on what appeared to be “best case scenario“ spinal leaks. These leaks are typically self-healed or repaired via 1-3 epidural blood patches (a procedure whereby your own blood is injected into the spinal canal in hopes that your blood will coagulate and “patch” the tear).  Discouraged by the lack of information as a patient and even more frightened of what was being taught (or not taught) in the medical profession, I took it upon myself to raise awareness.

Knowing I was not the “best case scenario leaker”,  I remained positive but was always in utter disbelief at the horrific pain I was forced to endure practically all day, and every day. THIS WAS UNIMAGINABLE. This had to be a nightmare. No person can sanely live with this pain …  pain which, at times, makes me want to end it if no one else can.

Nearing four years later, I traveled everywhere to see neurosurgeons, neurologists, neuro-radiologists and headache specialists. I endured 16 blood/fibrin multilevel patches, over a dozen miscellaneous procedures and 4 spine surgeries (ACDF C5-7, laminectomy L3-4, posterior cervical laminectomy and a cervical corpectomy at C7 with a fusion C5-T1). I am left feeling distraught, confused, in pain and fighting with myself to keep going.

Currently, I spend less than an hour upright each day, unless my pain is too severe. I must spend it wisely and take into consideration the total time required to perform daily activities such as using the restroom, changing ice packs, sitting propped in bed to eat, opening the door to let my dog come in/out, warming food in the microwave, etc. Having to plan my upright time brings a previously dismissed and otherwise taken for granted experience to the forefront of my life.

Many times I feel I am watching a 4th consecutive season of a “world show”, where everyone is going about their typical day of work, meeting family and friends, running errands and you know, living their lives. Meanwhile, I’m in the same seat, with the same view, and not at all moving forward, but watching as everyone does. It’s a unique place because I am aging, yet am still frozen somehow in my own time.

If I could do one thing, I would let anyone who is willing to listen, to understand what it truly means to have a cerebrospinal fluid leak. It can be an inconvenience to those with a mild leak, or it can shackle you to your bed for LIFE with a severe one.

I always hope that better technology and well-trained doctors in this field will emerge, and they will help the voiceless “leakers” find their part in this world again.