Allison shared her thoughts with us about how and why she’s participating in #duradash, and what she wants people to understand about spinal CSF leak. You can support her #duradash campaign here!
About Allison
I am 51 and my leak began when I was 49. It took 15 months, two spinal taps, multiple misdiagnoses, many MRIs, and finally two DSMs (digital subtraction myelograms) to find my leak. I had surgery to repair a T8-T9 venous fistula in March of 2022, but I continue to struggle finding equilibrium in CSF levels, fluctuating between rebound high pressure and low pressure symptoms. Currently, while I await more imaging to look for another leak, I am choosing to live each day to the fullest as best as I am able.
What are you doing for #duradash2023?
I am planning to participate in aquatics, walking, and painting.
What to you want people to know about spinal CSF leak?
I recently participated in a seminar with a panel of doctors connected to CSF leak and I am really encouraged by the new advancements in research, imaging, procedures and collaboration among specialists. Don’t give up! No matter how long it takes to find the leak, there is HOPE!
What research on spinal CSF leak do you hope to see in future?
Continued research on embolization, venous fistulas, venous congestion, and new forms of imaging like the Photon-Counting CT Scanner