Join Jamie’s Journey for Awareness and Healing
Help Jamie Beat Her Cerebrospinal Fluid Leak
Living with a Leak: Jamie’s Story of Courage, Community, and Unfinished Healing
Jamie Wilson is a devoted fiancée, mom to a blended family of four amazing kids, Diamond Art enthusiast, and Director of Account Services at StellarWP.
She lives in Hudson, New Hampshire, with her partner Joe, their kids, and their beloved Rottweiler, Reese’s.
In August 2022, Jamie’s life took an unexpected turn when she began experiencing symptoms of a cerebrospinal fluid (CSF) leak—an incredibly rare and complex condition.
What began as a mysterious and frustrating leak led her through a series of surgeries, setbacks, and medical challenges that continue to this day.
Through every twist in her journey, Jamie has leaned on the unwavering support of her family, friends, and work community.
This site is a place to share her story—one of strength, perseverance, and hope—with others walking similar paths.
Support Jamie Wilson: A Personal Journey of Resilience
Join us as we support Jamie through her health challenges.
Updates on Jamie’s Journey
Follow along for real-time updates on Jamie’s journey—including medical milestones, travel details, and moments of hope as she continues her path to healing.
March 2025: Jamie was accepted to the Mayo Clinic!
The journey continues…….
June 13th, 2025: Mayo Clinic Dates Confirmed!
Jamie has officially been scheduled for her consultation at the Mayo Clinic in Rochester on July 7th! Her case is being fast-tracked, and her patient portal already shows 16 appointments and procedures over what may be a 1–2 week stay. While she’s expected to be there for at least 10-14 days, final details are still unfolding.
This marks a major milestone in Jamie’s journey, and we’re all incredibly hopeful as she takes this next step toward healing. Thank you for the continued love, encouragement, and support—it truly means the world.
June 15th, 2025: Mayo Clinic Calls Back!
Jamie received a call back from the Mayo Clinic Friday Evening. Once her medical records were released for scheduling, the Department Head of the CSF Clinic, Dr. Jeremy K. Cutsforth- Gregory, M.D. reached out to the team and will be taking over her case. Dr. Cutsforth-Gregory specializes in abnormal CSF dynamics. The same treatment plan will now be completed by this Dr! Jamie is now going to be heading to Rochester for July 30, to meet with her new team from August 1st through August 8th, with the same 16 appointments and procedures.
Thank you again for the continued love and support!
July- August 2025: Jamie travels to the Mayo Clinic!
At the end of July, Jamie and Ana began their 5 week long travel to the Mayo Clinic! After many Dr visits with Neuro and ENT it was determined and confirmed my leak was in fact Cranial! Jamie over the next 2 weeks had series of tests to prepare for the exploratory surgery.
Jamie wakes up from surgery on August 19th with the most amazing news! Dr Eide and team, FOUND AND SEALED THE LEAK!!! This was the most incredible news to wake up to! As expected, it was an intermittent leak, but it was high up in the base of the skull. The team did reconstruction surgery and was able to build up my cribriform plate as phase one!
Phase two; Jamie began the medication to lower the inter cranial pressure. Once back home there will be some additional procedures and tests, but finding the leak and getting sealed was HUGE!
Jamie fought hard these last 2 1/2 years knowing there was a cranial leak, and there was nothing more justifying than receiving this news! We know our bodies best, and my only advice through all of this is do not give up and continue to fight through and advocate for yourself!
October 2025: Phase 3, finding out opening pressures after the leak has been sealed
For phase 3 of the treatment, Jamie had 2 spinal taps to confirm the opening pressures while on and off the Diamox (medication used to reduce the fluid/pressures in my head) These numbers were extremely elevated at 33.5 (on meds) and 39 (off meds).
The Mayo team has doubled the dose of the Diamox for the time being until we can get treatment for the high pressure.
October, 6th 2025. Spoke with Dr. CG from the Mayo Clinic.
The team has confirmed that Jamie will need another surgery at the Mayo Clinic in Minnesota where the team will place stents in Jamie’s jugular veins. Due to the type of surgery, the team feels it best that the surgery be completed back in Minnesota.
December, 1st 2025 – Jamie and Joe head back to Minnesota for venus stenting
With the help of the amazing team at Angel Flights NE, Jamie and Joe were able to fly directly into Rochester Minnesota. This visit was a much shorter stay. Testing and Surgery was all completed the first week of December. The team was successful in stenting Jamie’s right jugular vein. It will take about 6 weeks recovery for the body to adapt to the stent. During this time, Jamie will be on 2 medications, then in March Jamie will have a follow up venogram to determine if the Stent is open and the blood flow is active. If the stent is doing its job, Jamie drops down to a baby aspirin for life.
January 2026 – Jamies pressure rises again and she develops a new leak…
Jamie met with Dr Eide to discuss the new leak. Dr Eide will meet with Dr CG to discuss next steps. Before the team addresses the new leak, they need to address the continued high pressure…
To be continued…