Celebrate my RECOVERY MILESTONES by supporting my campaign!
I’m thrilled to participate in the 2024 #duradash, an event supporting the Spinal CSF Leak Foundation, now till June 8! Since this awareness and fundraising campaign ends IN 2 DAYS, action is needed NOW! Please let me share more with you, including a brief of my LEAK JOURNEY, my RECOVERY MILESTONES, and WHY your support is so important!
LEAK JOURNEY—
Diagnosis & Treatment
One morning in 2017, I woke with an intense headache and weird neurological symptoms that quickly became debilitating, and never went away. Life as I knew it stopped. I was misdiagnosed and misunderstood. In 2020, I finally received a likely diagnosis of intracranial hypotension due to a spinal CSF leak because the repeated treatment of non-targeted epidural blood patches improved my symptoms. However, relief was partial and short lived. We did repeated imaging, as well as earnestly patching suspect leak sites, trying to locate the exact site of the leak so that treatment could be targeted, durable and long-lasting. As time passed, my symptoms became more severe. In late 2022, my leak site was FINALLY FOUND, and shortly thereafter, durably repaired in a minimally invasive spinal surgery.
Post Treatment
I have been recovering a little over a year now, ever since surgery. I’m incredibly thankful to be out of bed, to move about, once again participating in an upright world. My symptoms have significantly improved, but I’m nowhere near my prior “normal” self. Sometimes I get discouraged with the surprising uncertainties during the process of recovering. There are fears not knowing if complete recovery is even possible, how co-conditions will be impacted, and if a re-occurrence of a spinal leak might happen.
There is little to no published evidence to use as a guide for recovery, so most in our community rely on a combination of suggestions from specialists, anecdotal evidence from our support community, and simply listening to our bodies. Most specialists are out-of-state to us patients, impeding access to effective care, and there are no systems in place to facilitate local comprehensive care.
I was honored to participate at the inaugural Bridging the Gap Conference, at the University of Colorado, in partnership with the Spinal CSF Leak Foundation, speaking on my story and personal recovery experience.
RECOVERY MILESTONES—
Two years ago at 2022 #duradash, before we found my leak, I was effectively bedbound with severe leak symptoms. Last year at 2023 #duradash I was at the beginning of my recovery, mostly upright, participating in many aspects of a very simple daily life. And today, I’m celebrating huge RECOVERY MILESTONES!
-> I’ve been able to start traveling, including road trips of various lengths and some flight destinations
-> A few weeks I was able to get in 5.1 miles of steps in one day, the largest one-day total
-> This week I was able to get behind the wheel to drive for the first time in 7 years!
While I’m still nowhere near the person I was pre-leak - I am significantly improved!
YOUR SUPPORT IS NEEDED—
Celebrate my progress and RECOVERY MILESTONES with me, while also remembering all the work that still needs done to continue advancements to care for all in our community! It’s crucial that our community continues to RAISE FUNDS for more research and education to help all leak patients at whatever stage in their leak journey they are at. Supporting Spinal CSF Leak Foundation in their mission to improve care for those with spinal CSF leak is VERY meaningful to me! I’ve been volunteering for almost 3.5 years, and we personally donate each year.
PLEASE consider supporting my #duradash by sharing this campaign with anyone in your community and/or making a donation to this amazing organization! All kinds of support are greatly appreciated!
Sincerely
Jen
PS my profile pic shows me driving for the first time!
