Even though we know that spinal CSF leak has a profound impact on physical, mental, and spiritual well-being that is comparable to, or even more severe than, other neurologic disorders producing similar symptoms, the impact of SIH on quality of life has never been systematically investigated or documented in the medical literature. Dr. Deborah Friedman wants to change that.
In our final conversation about her groundbreaking new study on quality of life in people with spinal CSF leak, Dr. Friedman talks about the scales used in her study, and the importance of hope.
More about Dr. Friedman’s study
Dr. Deborah Friedman’s study aims to create a validated quality of life scale that is specific to SIH and spinal CSF leak.
When people with symptoms of spinal CSF leak are evaluated by doctors who want to understand how debilitating our pain is, we might be asked to rate our pain on a 1-10 pain scale. We might be given a questionnaire about migraine severity. Sometimes we’re asked to evaluate our depression or anxiety levels, or even required to take personality tests. But none of those capture the true nature of the experience of SIH and spinal CSF leak.
Having an SIH-specific scale to help evaluate patients would be a welcome data point in the murky diagnostic process. There is no definitive diagnostic test for SIH and spinal CSF leak. While some patients receive a diagnosis soon after the onset of symptoms, others may suffer for months, years, or even decades without a diagnosis or treatment.
Funding Dr. Friedman’s study means that for the first time in medical literature, patients’ voices can be heard in terms of exactly how disabling this condition is. And ultimately, this information can be used to help speed treatment, and to help further research.
Donate today to help make a measurable difference in the lives of people suffering with SIH and spinal CSF leak!
