Individuals with a spinal CSF leak are often very disabled by the headache and other symptoms that are much worse when upright. As a relatively uncommon condition, sufferers often endure lengthy delays before a correct diagnosis. That delay may span months, years and even decades. This condition is TREATABLE, so early diagnosis is important. We want to see patients get more timely access to the most appropriate diagnostic testing and treatments. Greater awareness amongst medical care providers as well as the general public will improve the situation.
Diagnostic imaging is highly specialized, yet even in expert centers, a large percentage of imaging studies will be negative. Imaging sensitivity is limited; more research into refining the diagnostic testing is needed.
Long-term outcomes are under study. While it appears that the majority of patients that receive the correct diagnosis do well, a subset suffers with residual symptoms and a few remain quite disabled. More study will help to refine treatment approaches to achieve consistently good outcomes.
WE NEED YOUR HELP.
Help us to make a difference! Spinal CSF leaks are TREATABLE.
Faster diagnosis and treatment can alleviate much suffering and disability!
Raising awareness and providing education is critical.
Research is also needed to refine diagnostic testing and treatments to improve outcomes.
DONATE directly to us through Network for Good (tax-deductible)
If you prefer to mail a donation check, you may make a check payable to “Spinal CSF Leak Foundation”
Remember to include your full name and address so that we can mail you a receipt for income tax purposes.
Spinal CSF Leak Foundation
8840 North 7th Avenue
Phoenix, AZ 85021