Saturday, July 30, 2016
APPROX. 4 YRS AGO I HAD AN MRI OF MY BRAIN WHILE LOOKING FOR A REASON FOR A VISUAL DISTURBANCE, WHICH TURNED OUT TO BE A STROKE IN MY OPTIC NERVE. WELL WHILE READING MY MRI THEY FOUND THAT I HAD CHIARI MALFORMATION THAT WAS AN 8, I`M ASSUMING MM. THE NEUROLOGIST THAT FOUND THIS TOLD ME THERE WAS NOTHING TO WORRY ABOUT AND THAT MOST PEOPLE NEVER DEVELOPE SYMPTOMS. FOR AS LONG AS I CAN REMEMBER I HAVE BEEN EXPERIENCING MAJOR HEADACHES, WHICH YRS AGO WERE DIAGNOSED AS CLUSTERS. ALSO SINCE I WAS ABOUT 14 I HAVE ALSO HAD PERIODS WHERE I CANNOT CATCH MY BREATH, IT USED TO BE SO BAD THAT I WOULD AWAKEN IN THE MIDDLE OF THE NIGHT GASPING FOR AIR. I AM JUST NOW HEARING ABOUT SURGERIES TO FIX IT, BUT THE DOCTOR I SAW ALL HE SAID WAS THAT I SHOULD NEVER HAVE A SPINAL DONE AND THAT IS IT. I WOULD LIKE TO KNOW MORE INFO ON THIS DISORDER AND THE SURGERY, RISKS AND ALL WHETHER I OPT FOR SURGERY OR NOT. AND POSSIBLY A GOOD DOCTOR TO SEE IN THE CLEVELAND, OHIO AREA.
This is the Stroke Netwellness site, and thus I am not an expert in the management of Chiari malformations. As such, I would recommend that you seek care from a neurologist and/or neurosurgeon locally who can work with you. It is probably not appropriate for me to recommend a physician for you, but I know that there are excellent neurologists and neurosurgeons throughout the Cleveland area. Both Case Western Reserve and Cleveland Clinic are excellent centers for neuroscience care.
However, I can tell you that optic nerve symptoms are not generally related to Chiari malformations. Headaches can be related, but generally patients have neck pain, problems with eye movements, and/or imbalance. It sounds like you have obstructive sleep apnea, which has been associated with Chiari malformations in children.
It is important to know that headaches and obstructive sleep apnea are both very common in people WITHOUT Chiari malformations too. Chronic headaches can be the result of untreated sleep apnea. Thus, it is not certain that the Chiari malformation is related to your current problems.
Brett Kissela, MD
Assistant Professor of Neurology
Director, Neurology Residency Program
College of Medicine
University of Cincinnati