“I have a CSF leak.”
When Jon came home from an Ear-Nose-Throat specialist one afternoon in July 2009 and said those words, I didn’t fully grasp the severity. At the time of his diagnosis, I knew nothing about cerebro-spinal fluid leaks; in fact, I didn’t even know that CSF stood for cerebro-spinal fluid. All I knew (because Jon told me) was that he needed surgery, and the sooner, the better.
After a very long and miserable surgery that August, I started researching CSF leaks to learn what, exactly, it was that Jon had. Evidently, the brain and spinal chord are normally surrounded by a thick layer called the dura that protects these vital organs. In addition to keeping the cushioning cerebro-spinal fluid around the nervous system where it belongs, it also creates a perfect pressurized chamber that the brain needs in order to function well. For people like Jon, a hole develops somewhere along the dura, releasing spinal fluid and breaking the pressurized vacuum. It also allows bacteria direct access to the brain or spinal chord and can result in meningitis and other serious health complications.
For years before his diagnosis, Jon had suffered from what we wrongly assumed was horrible allergies. He already knew that antihistamines didn’t help at all, and he didn’t seem to get better or worse depending on the changing seasons. Every few days, he would be wracked with headaches, burning eyes, and nasal congestion. In 2009 after the birth of Little Princess, we met our out-of-pocket maximum with our health insurance, and Jon decided to get help with his “allergies.”
We were shocked to learn that, after three rounds of intense testing, he was allergic to nothing. The allergist wrote him off as having “non-allergic rhinitis” and sent him home. Unsatisfied with this non-answer to a very major issue, I got him an appointment with an ENT for a second opinion. It was during this appointment that he first heard the term CSF leak, and a week later a CT scan confirmed his diagnosis of a spontaneous cranial cerebro-spinal fluid leak.
Jon’s CSF leak has caused him migraine-level headaches, breathing difficulty, and numerous other side effects. Although his first surgery was successful in repairing the leak, the repair only lasted 18 months before it ruptured again. He’s had more surgery and seen more doctors, but nothing has yielded a permanent fix yet. We’re hopeful that someday he might be healed, but for now, it’s simply his “thorn sent to buffet him” that we have to live with.
Even so, simply knowing what it is that is causing his bizarre symptoms has in itself been a help. We’ve connected with other CSF sufferers who not only sympathize with the often-debilitating effects but who are also a wealth of knowledge about specialists, procedures, education relating to CSF leaks.
This will be an ongoing journey for us, but we know that the Lord will use it for our good and His glory.