My CSF Leak Story- The Hidden World Of Spinal Leaks

It's funny the twists and turns your life and your career can take. As a digestive and cardiovascular health specialist, my research and consulting calls for a particular focus on intestinal and endothelial permeability. 

Excessive intestinal permeability is sometimes called, "leaky gut".   Back in 1999 my body had a different kind of leakiness going on. I keep my csf leak story out there because I receive many emails from people around the world grateful for raising awareness and I suspect just knowing that they are not alone. 

In part, my story is about instincts and knowing that you know your body best—regardless of the condition. In 1999, I developed a chronic CSF leak after two epidural lumbar steroid shots, which brought my motion meter to a grinding halt and in bed for three years with a condition called intracranial hypotension, which can ultimately lead to your brain sagging.  Your brain is heavy—believe me! My two boys were three and five at the time. Those three years were followed by two years of slow improvement before I more fully had my function and life back.

A chronically protruded lumbar disc that was resistant to physical therapy, along with the urging of my physician and physical therapist, I reluctantly conceded to having two epidural steroid shots in my back. 

In theory, the shots would reduce the inflammation, and allow my disc to heal.  My instincts were very leary about this procedure, but compared to surgery, an epidural shot seemed easy. Ultimately, my pain made the decision.

The procedure takes about 15 minutes, several doctors told me that they give these shots, “all the time”, and with a little luck my back would be feeling better.  

Every day, hundreds of doctors poke needles into the sacred spinal canal for various reasons and more often than not, the procedure goes flawlessly and the purpose of the test is achieved. 

But more often than perhaps many physicians realize, a spinal headache can develop that does not always heal in the timely manner that the medical establishment believes. 

 The disclaimer lists many horrible conditions that may occur from this seemingly benign procedure. I distinctly remember my doctor saying, “Don’t worry about the headache, it almost never happens”. 

I received two shots, five weeks apart (they are usually given in a series of three). And truthfully, the actual shot is a piece of cake. The first shot helped my back pain, but within a week I started developing headaches. Not debilitating headaches, but for someone with minimal headache history—they were attention getting. 

Since my back was feeling better, I cautiously started light exercise. But the headache thing worried me.  I even began to believe I had a brain tumor because my right foot also became somewhat floppy….better known as “foot drop” (a hallmark sign that a nerve has been brushed).   Walking required a conscious effort to lift my foot.  

Most physicians have never heard of spinal headaches lasting longer than a few weeks and as it turns out the “almost never” statement by my doctor regarding their existence is not quite accurate.

Though the numbers vary, up to as much as 30- 40 % of people experience a spinal headache after a lumbar puncture—pregnant woman after childbirth being among the most frequent victims.  

Sitting on the exam table at 9:00 am, waiting to receive my second shot, I asked the doc and his nurse if my first shot was the cause of my headache. 

And herein lies my greatest concern with this condition. My physician, who was working at one of the three most prestigious hospitals in Boston said to me, “Spinal headaches never last five weeks and it would be the worst headache of your life—not to worry”. 

My doctor was absolutely convinced my headaches were unrelated to the shots….so, before I could say, “spinal leak”, I was agreeing to have another one, which proved to be the proverbial last straw to my already existing spinal headache’s back.

Though hindsight frequently looks different, had my doctor been up-to-date on the literature, and recognized the range and degree of symptoms, I would never have received the second shot.  Yes, I made the choice to have the shot, but he was not informed enough to make his medical choice.  Had I followed my own instincts, I would have never had the shot.

Soon after the second shot my headaches took an obvious turn for the worst.  They became pressure-like and standing became a great feat. My husband compared it to having “a baby grand” on my head, and I sort of likened it to G-forces, pulling my head down.  

A csf leak truly makes you believe that your brain is being sucked right down your neck—it is not your garden variety headache. I then entered a world of spinal leaks that would have physicians doubting my symptoms but also scratching their heads as to why a seemingly healthy, active, young woman could no longer stand up.

I spent the next three years in bed with multiple cranial neuropathies, tremendous nausea, double vision, arm weakness and pain, ear fullness and the cardiovascular changes that still linger—arrhythmias and low blood pressure.  I couldn’t get out of my own way.  Needless-to say, spinal headaches can flip families upside down—my two sons were three and five at the time. Emotionally, it was the worst part of the whole experience.

Csf fluid literally protects your brain from hitting your skull with even the slightest movement. Picture a ball in a bucket of water. When a hole punctures the dura, csf leaks out.  Since the spinal canal is an open system to the brain, the brain is acutely affected by this leaking. 

Unfortunately, it doesn’t take much csf leakage to start a headache. Standing for any length of time is impossible.  Depending on how large the leak and how long it lasts, the brain actually begins to sink in the skull—simple physics. Talk about the ultimate body part you do not want sagging.  At its worst, this sagging brain phenomenon can cause a subarachnoid bleed, put you into a coma, or kill you.  If a spinal leak hole doesn’t heal, it transitions into a condition called, intracranial hypotension…a broader term but still implying too little csf for the brain.

 

YIKES--G-FORCE TYPE FEELING WHEN YOUR BRAIN HAS TOO LITTLE CSF.

Throughout this time I had the recommended blood patches —three of them, all unsuccessful.  A blood patch takes your own blood and inserts it like an epidural shot into the level of back that has the leak, temporarily clotting the hole and hopefully jump-starting healing. Except for lying in the back of our car to medical appointments, traveling was nearly impossible.

By year three I could tolerate sitting in the car to make it to a neurologist in NYC, who to this day I hold so much gratitude. In a matter of thirty seconds after looking at my MRIs and confirming my “brain sag”, she validated my whole condition—something no one else seemed to be able to do. 

I wasn’t crazy.

I’ve decided reading an MRI is as much a speciality as any medical discipline.  Her advice  was to forgo any more needle poking in my back and wait it out.  I did, and eventually, I healed—mostly.   

Over twenty years later, I am much better-still 24/7 head pressure and limitations with exercise but no comparison to the life I was living. 

In part, my experience is what accelerated my interest in functional medicine and a more whole biology approach to our health. Regarding csf leaks, my hope is that with better imaging small leaks will be more easily detected—even just to validate the condition.  Csf leaks can also occur spontaneously for a variety of reasons.  Epidural steroid shots should not be encouraged for back pain because they are a short term bandaid. 

Before receiving any kind of lumbar puncture, to minimize leaking, be sure your doctor is savvy regarding techniques and needle sizes. Perhaps, most importantly, for the medical community to recognize the signs of a csf leak. They don't always start out as the worst headache of your life.

As a former athlete and also someone who naturally likes to move, I look at the daily movement in my life now in a much different light.  Prior to my leak, I would have thought only my more rigorous physical exercise was beneficial—despite being otherwise active. But as drastic events in life often do shake you to the core—I love my daily walk or swim and hold much gratitude for every step my body allows me to take.  We each travel our own medical road in life. I tell my clients, don't be afraid to listen to your instincts.

You, the owner of your body know it best!