My leak journey began in August of 2022. One day, I just started leaking! That’s it. Fluid would leak from my right nostril when I tilted my head in any direction. It was more annoying than anything. Doctors for the first couple of months thought that it was just really bad allergies, as my only other symptom was constant headaches on the right side of my face. We tried allergy medication, nasal sprays, and steroids, and nothing was slowing down this annoying leak or helping this horrendous headache. During one of my visits to my Primary Care, Cheryl, who is so AMAZING, and the one who said from the beginning, Jamie, something is not right, explained to me that she believes I am leaking Cerebrospinal Fluid. 

For those who are not familiar with CSF, it is the fluid that surrounds both your brain and spine. There is only one test that can confirm that the fluid is, in fact, CSF. This test is called a BETA-2 Transferrin test. This test checks for a protein, which should NOT be present. Cheryl immediately set me up with an ENT specialist and ordered a CT Scan of my head. 

In late October, I met with my new surgical team, and the results of my CT scan and BETA-2 tests were in. Both were abnormal, and my journey began! In early December, my team scheduled surgery to repair 2 holes in the right region of my Cribriform plate. (This is at the base of my skull.) This was a very intense surgery and had me down and out for about 12 weeks. I did not fully heal correctly, and in February 2023, I needed to have another smaller surgery. 

By March, I was feeling better and still recovering a bit from surgery, as there were so many regulations I had to abide by. But I was not leaking, the pressure was gone from my head, and things felt great!

Fast forward to October 2023, I leaned forward to feed Reese’s, and I immediately knew this feeling 🥹I had developed another leak. This leak presented completely differently from my original leak. From the very first time I felt the leak until today, this leak has been very mild. For doctors to 100% verify CSF is to run the BETA-2 test. With that test, there has to be at least 2 tablespoons of the fluid, it has to remain cold, and it is only viable for a couple of days. Because this leak is so different, it’s been very challenging to collect the fluid for my team to test. 

By February 2024, my symptoms were very different this time around. I could no longer be upright as I was experiencing brain sag caused by IIH (Idiopathic Intracranial Hypertension). This is where there’s increased pressure inside the skull, often caused by a buildup of cerebrospinal fluid around the brain. So, if you can imagine, I have a constant headache, constant tinnitus, brain sag, and high pressure. All of these symptoms followed me daily. I was scheduled to have an exploratory surgery to see if the team was able to locate the leaks. For this surgery, the team injected what’s called Fluoroscein into my spinal fluid. The goal is with this being a fluorescent colored fluid that, if injected into the spinal fluid, would be detected by my team during the surgery and would allow them to locate the pin-sized hole(s). The team located 2 small areas, suctioned the fluid, and attempted to locate the exact location, but were unsuccessful. This surgery caused me to need a spinal drain tube, and I was in excruciating pain. I was at Southern New Hampshire Medical Center for 9 days. The team there was great. While working with so many different teams, the team was trying to decide whether or not to do a craniotomy, or to transfer my case to another hospital, Mass General. My team had several discussions with the head of Neurosurgery at Ma Gen, and the ultimate decision was to transfer me by ambulance to Boston. 

My time in Boston. Over the next 5 weeks, I spent my time on Floor 8 of the Neuro Unit at Mass General, I had a great room, and a beautiful view overlooking the Charles River. The nursing staff and teams there were truly amazing. During my time there, I had some of the most intense testing I could imagine just to try and locate exactly where this pinhole of a leak is coming from. Some of these tests consist of weekly Spinal Taps, MRIs, MRAs, MRVs, CT scans (all with/without contrast), Mylograms of all kinds, and so much more. With all of these tests and the mixed results, the team is unable to identify if my leak is now both Spinal and/or Cranial. 

The team decided, as a last option to give me some relief, was to try a Blind Blood Patch. For this procedure, I need to have a PICC line placed so the team can get a certain amount of blood from me (my veins are tiny). This blood is then mixed with another agent and injected into my spinal fluid. In hopes that the blood will fill any leaks, and once the blood hardens, it acts as a patch. 

Over the next 10 months, my medical team has not given up and has tried 3 different blood patches, both blind, targeted, and using Fibrin glue. Along with additional MRIs, CTs, and Myelograms. In January of 2025, my team suggested that we look into other CSF Specialists as my symptoms are only getting worse. 

The start of my Mayo Clinic Journey! During the month of January, I worked on getting all of my medical records sent to the Mayo Clinic in Minnesota, where they have a well-known CSF Clinic. Now guys, WOW – with the amount of records and tests I had over the last 2 years was insane… Thankfully, with today’s technology, all my records were uploaded into my new Patient Portal at the Mayo Clinic. Over the next 12 weeks, the team at the Mayo Clinic reviewed all of my scans, and in April, I received confirmation that they have accepted me as a  patient!!!!

What does all of this mean? This means that the team has reviewed my scans and both see an issue and believe they can fix the issue!!! There is a bit of a waitlist to get into the Clinic, but I am just happy that I have been accepted! In the next couple of months, I will receive word on when they will be scheduling my appointment. From there, it is typically scheduled within 6-8 weeks. At which time I will be flying out to Minnesota to hopefully put this leaky journey behind me!

My Family and I have been through so much on this journey. We have learned so much, we’ve had every emotion, from anger to sadness, to complete humility at seeing the type of support there is out there. Without my family, friends, and work-family, I would not have been able to get through any of this. 

This journey is far from over, but I am very hopeful for the next stop on the ride! Thank you all for reading this far and following along. Stay tuned for more updates to come!