My spinal CSF leak is finally fixed

I’ve been wanting to share my story for a long time, but there was so much uncertainty for months that I honestly didn’t even know how to explain what was happening.

Everything started on November 8th. I knew something was seriously wrong, but it took until December 10th for me to finally be admitted and get the MRI that revealed what was going on. I received a blood patch and was discharged about a week later, but deep down I knew it wasn’t going to work — and it didn’t, because the bone spur causing my leak was completely submerged.

By December 17th, I was back in the hospital because my brain had started hemorrhaging from prolonged low CSF pressure caused by a spinal CSF leak.

I was presented with two options for treatment: Duke University Hospital or Cedars-Sinai Medical Center. Thanks to guidance and kindness from previous CSF leak patients, I chose Cedars.

My leak was located at T1-T2 and was caused by a bone spur puncturing my dura. I initially underwent the endoscopic repair route. Within about a month, my brain imaging improved almost completely, which felt incredible after everything that had happened. But one thing never improved: the fluid collections in my spine.

After the endoscopic surgery, I also developed a neurological complication called Horner’s syndrome. It caused severe pain in my arm along with facial drooping, eye drooping, numbness, and nerve-related symptoms throughout the entire right side of my face and upper body. It was terrifying and added another layer of pain and uncertainty to an already overwhelming situation.

For four months, I was getting MRIs almost every month, waiting for answers. Even though there was no improvement in the spinal fluid collections, my doctors still couldn’t confidently tell me whether I was actively leaking or not. Living in that uncertainty was mentally exhausting.

Around that same time, I began experiencing severe pain and ended up rushing back to Cedars. A couple of days later, I underwent a laminectomy — and for the first time, they were finally able to tell me with certainty that the leak is fixed.

I’m currently day 4 post-op still at the hospital. The pain has honestly been unbearable at times. I’ve dealt with fevers, fear, setbacks, exhaustion, neurological complications, and months of physical, emotional, and financial stress that completely changed my life.

One of the hardest parts about CSF leaks is how invisible they can be. People see a picture or a brief moment online, but they don’t see the endless scans, hospital stays, uncertainty, complications, isolation, or the mental toll of not knowing if your body is healing. Not to mention few people and many drs don’t know what it is.

CSF leaks are rare, serious, and incredibly misunderstood. I’m sharing this because I know how desperate I was to hear stories from other people when this first started happening to me. The kindness and guidance from other leakers truly helped direct me toward the care that ultimately saved me.

I also really want to help other people going through this. If you have questions about CSF leaks, treatment, symptoms, surgery, recovery, or if you just need someone to talk to who understands how isolating and terrifying this can be, please feel free to reach out to me. I know how overwhelming this journey is, and no one should have to go through it alone.

Right now I’m just trying to focus on healing and taking things one day at a time. I still have a long recovery ahead of me, but after months of uncertainty, finally hearing “we know it’s fixed” meant everything 🤍