To create a scale that neurosurgeons can use with patients. We hope that the scale will allow doctors to predict surgical outcomes in Chiari patients. If so, it can help determine if surgery or medical management is a better treatment plan for a given patient based on their clinical signs and symptoms.
Only two treatment options currently exist for people with Chiari disorders: surgery or medical management. From past research, we know there are a number of factors that can influence surgical outcomes. These can include age, body mass index, neurological symptoms, syrinx, spinal instability and others.
Right now, there is no way to predict how a person will do after surgery when they are first seen in clinic. Often, even the most experienced neurosurgeons can’t predict how a Chiari patient will do after surgery. This makes the choice to have surgery difficult for many families.
To try and change this, this research study will carefully follow patients who have had Chiari surgery and try to identify different clinical and imaging factors that may predict a successful outcome.
There is very little high-quality, multi-center research on Chiari disorders. To change this, a number of research centers have come together to try and develop the Chiari Surgical Success Scale (CSSS). This will be the first scale that will use symptoms, clinical signs and medical imaging information to identify characteristics that might predict a good surgical outcome.
The ultimate goal is to create an easy-to-use scale that neurosurgeons can use with patients in clinic when they first step through the door. The CSSS should help doctors, patients and loved ones face easier decisions when the time comes to consider surgery.
Your neurosurgeon will choose the best treatment option for you. Your treatment plan will be the same whether or not you choose to participate in this study. If you have any questions about your treatment, don’t be afraid to talk to your doctor!
A medical treatment is only effective if the patient says it is.
This study will collect meaningful information from participants to learn what surgical treatments for Chiari are best according to patients. At the end of the day, the patient alone knows if the treatment was effective at relieving symptoms. This study’s primary outcome comes directly from the patient.
The Bobby Jones Chiari & Syringomyelia Foundation is an important partner in this research. Representatives will contact participants regarding their participation and follow-up. Bobby Jones CSF will also work to ensure this study prioritizes patients along every step of the way– from planning and execution to the sharing of results. If you have questions or want to better understand how to make your voice heard during the study, contact Kaitlyn Esposito.
We encourage you to ask questions! Talk to your doctor, local research coordinator or reach out to Kaitlyn Esposito by phone (718-966-2593) or email.
Revised: 11/2020
