I'm Natalie, 51 years old, and I live in Northern California with my husband and have an adult daughter who lives in Los Angeles. I lived an active healthy lifestyle until one day in 2020, I began having multiple symptoms that disabled my life.

I have been diagnosed with two rare medical conditions with less than 1% diagnosis.

In 2022, I was hospitalized for stroke-like symptoms and was in the hospital for 6 days/5 nights. I underwent MRIs, CT scans, lumbar punctures (to test for MS), and everything came back negative. They did find an artifact in my brain, and I was referred to an oncologist who then referred me to UCSF in San Francisco to a neuro-oncologist in 2023. After several MRIs, I was diagnosed with a rare brain tumor that less than 1% have called MVNT (Multiple Vacuolating Neuronal Tumor). While going through ongoing evaluations, my symptoms of headaches, head pressure, tinnitus, blurry vision, dizziness, neck and back pain, vertigo, brain fog, memory loss, and fatigue have continued. (These symptoms were dismissed by other physicians or downplayed for anxiety and migraines since 2020 and left me bedridden, my life flipped upside down). However, the neurologist did not relate those symptoms to the MVNT (located near my central nervous system). After several 911 calls for my exacerbated symptoms and multiple ER visits, I was referred to receive a second opinion from a headache neurologist specialist, who then referred me to Stanford Medical Center in 2024. This was a 2 and a half hour drive from our home and required us to stay in hotels. I underwent additional MRI brain and total spine images, and it was discovered that I have a Cerebral Spinal Fluid Leak (CSF Leak), another 1% group.

I underwent a blood patch and felt great for about 6 weeks, and symptoms stopped. Until one day, they were all back again. I underwent additional tests and MRIs and was later scheduled for a CT Myelogram, a medical procedure that involves putting a scope in my spine to find a tear or leak in my dura that surrounds my spine, to see where the CSF leak is flowing. It was excruciating, and I underwent a blood patch again. After recovering for 4 weeks, I was diagnosed with a Venous Fistula, which means the CSF is leaking into a vein along my spine. So, I had an embolization surgery to seal the leak on the vein. This was our 2nd visit and staying in a nearby hotel. Again, my symptoms returned after 4 weeks. My last attempt was a 3rd blood patch. That was unsuccessful.

I was referred to Cedar-Sinai Medical Center in Los Angeles to a world-renowned neurosurgeon in 2025. So, in January 2026, we flew to LA and stayed in a nearby hotel. This medical center is in Beverly Hills, and the hotel was very expensive. My new tests included a Digital Subtraction Myelogram (DSM), similar to a CT Myelogram, and multiple MRIs. It was a 4-day process which was very scary and difficult emotionally to get through. Sunday MRI, Monday DSM left side, Tuesday DSM right side, and Wednesday Foraminotomy Spine surgery. It was so tough and very painful. I spent 6 days in the hospital and stayed at a nearby hotel for 10 days before flying home.

The mental and emotional anguish of losing who I was is the toughest battle. The high pressure in my head is sometimes unbearable. I am bedridden, and can not lift, twist, or bend.

I am currently on a leave of absence from work and not scheduled to return till April 2026, if able too. I am 6 weeks post-surgery, and still have my symptoms. But I still live with pain in my spine from the surgery and the titanium clip they placed on the vein. My head pressure is worse, called rebound intracranial hypertension, which is my head filling back up with CSF and my brain sag returning to its normal position. All very painful. I can hardly walk.

I still have a long road of recovery ahead of me, starting with physical therapy. They say it can take up to one year till I feel somewhat normal again. I have been suffering with these symptoms since 2020 and working full-time, getting married, and buying a home, all the while not knowing what was wrong with me.

These donations will go toward helping pay for medical expenses for what insurance didn't cover, travel expenses for treatment, and help support us with day-to-day bills while I am on a leave of absence

Inspire - My CSF Leak Story

Understanding CSF Leak