Michael’s spinal CSF leak story
Many people with spinal cerebrospinal fluid (CSF) leak experience head pain as the first indication that something is wrong. In Michael’s case, his head pain didn’t start until a year after his first symptoms began. Here is Michael’s story.
An unusual beginning
How old were you when your spinal CSF leak symptoms first started, and what was that like?
My symptoms came on suddenly when I was 40 years old. I woke up, tried to get out of bed, and lost my balance, falling to the ground instantly. I tried to stand, but found I couldn’t without holding on to something. My vision was distorted—white fuzz, dark, blotchy—and when I moved my head, everything shook like an earthquake. I was so sensitive to sound, as it felt like I had supersonic hearing. Loud noises, such as the scream of my one year old, would jolt me to the floor, and I would fall regularly. Eventually, I was diagnosed with bilateral vestibular failure, but that wasn’t the whole story.
What was your most compelling symptom?
In the beginning, the total loss of my vestibular system was an onslaught—sensory symptoms, total loss of balance, auditory phenomenon, loss of bladder control. I had fatigue so overwhelming that I couldn’t get out of bed even to brush my teeth. After about a year, I began experiencing head pain so intense it was an 11 out of 10. I pushed on and kept working, but I became so weak, and the pain became so severe and my loss of balance so debilitating, that I had to turn down a promotion and leave my job. At my lowest point, I had no time upright at all. Finally, during the height of COVID, two years since that first day when I woke up with no balance, I flew across the country, flat and alone, to have exploratory surgery.
Finding a diagnosis and treatment
How long did it take to get a correct diagnosis?
In the early days of my symptoms, even the experts seemed to be unaware that vestibular symptoms could be a sign of a CSF leak. I saw multiple neurologists who all told me it was impossible for me to have a spinal CSF leak. Now vestibular impairment is listed as a presenting symptom, and I feel more doctors are aware of it enough to look for it.
How was your spinal CSF leak treated?
I went to a specialist and had an epidural blood patch that instantly relieved my head pain, and even my vestibular symptoms improved dramatically. My fatigue was gone, my eyesight got better. It was this sudden improvement that kept the specialist working on me and ultimately led to my recovery.
Did your spinal CSF leak show up on imaging?
I had every scan in the book multiple times at multiple hospitals, and in 2020 a CT myelogram showed multiple leaking cysts riddling my spine. Once those were identified, the specialist targeted each one with patches over the course of a year to slowly identify the leak site. Although he was never able to definitively point to a specific place, I journaled my symptom improvement and kept detailed, copious notes after each patch. This led us to think T8-9 was the most suspicious place for a leak. That was when I went across the country for surgery. The surgery I had there at T8-9 gave me relief for nine months. Unfortunately, after that, my symptoms came back. But I was able to be evaluated at a center in the midwest, and after a series of patches, I appear to be sealed again.
Living a spinal CSF leak story
What do you wish doctors knew about spinal CSF leak?
Doctors need to know that it is more prevalent than we think, and we need more education around the country and the world on what to look for and how to treat and find them.
What was the most frustrating thing about living with the condition?
Living with a leak is an epic battle. I had to fight to be heard and trusted that my symptoms were real. Because of the lack of understanding of leak symptoms, doctors are unaware what to listen for and look for. It makes me happy that my case was able to help raise awareness about vestibular symptoms as part of the spinal CSF leak symptom list.
What was the most surprising thing about living with a spinal CSF leak?
Through the pain and suffering of my spinal CSF leak, I had to leave my job, I lost my family, my marriage was destroyed, and my identity as I knew it was obliterated. But somehow in the loss, the journey has showed me who I really am. It awakened my spirit, which was sleep-walking for a long time as I trudged through work, life, and starting a family—something many of us do, though unfortunate. Ultimately this journey helped make me a better father, a better listener, and has taught me how to enjoy the beautiful things in life again.
What helped you cope?
Journaling, music, and during the two and a half years I spent bedridden, I listed to 100 audiobooks.
Looking to the future
What are you hopeful about?
Hope is in my soul always. I am lucky I had a mom who taught me to never give up, and so I was never going to lose hope, no matter what.
Many didn’t believe me because the symptoms are invisible. I fought on and thankfully was able to find doctors who believed in me enough to get me upright again. Now i am in the best shape of my life, though I’m still battling vestibular hypofunction, My current specialists have told me they are shocked that I’m not using a walker after all of this. But I keep going. I walk daily, outside in the rain, cold, it doesn’t matter. The way I look at life now is that “I get to ” exercise today—not “I have to.” Once you lose the ability to live your life the way you used to, you learn to appreciate it.
What’s your new “normal”?
I have had to adjust to the new “me.” I’ve worked with a therapist since 2018 to navigate my illness and accept it into my life. It has been a humbling process. As a high-functioning former executive and active, outdoors person (skiing, golfing, etc.), I have accepted the new me, and in a lot of ways, he is a better version of myself. Through the struggle, we learn to see the world and ourselves through a different lens.
Do you have any words of advice for people affected by spinal CSF leak?
Keep going! My journey has been long, arduous, and destructive, but in many ways I wouldn’t take it back. It has helped shape who I am today.
What are your plans for the future?
I am working my way towards operating within my new “limits.” I plan to spend more time with my kids, and not work as much as I have in my former life. I plan to smell the roses more, I plan to live simpler, and I plan to survive.
Further reading:
See our Patient Stories page, where you can watch videos and read narratives of people’s experiences with spinal CSF leak.