Susan initially diagnosed herself. She went on Google and figured out what she had. Hemifacial spasms (HFS) are caused by a blood vessel impinging on the seventh cranial nerve in the brain stem. Two years ago, at the advice of a neurologist in Baltimore, she tried to control the spasms with Botox. This we found out today is typical, though it is not recommended because it causes further facial nerve issues. It stopped the spasms temporarily, but also froze her face unevenly. She stopped after 3 or 4 treatments about 9 months ago.
To make a very long story short, tomorrow (Wednesday) Dr. Amin Kassam is going to perform surgery to find the nerve and the offending blood vessel, and insert a Teflon sponge in between the two. Dr. Kassam is the Director of the Minimally Invasive endoNeurosurgery Center at the University of Pittsburgh and the Chairman of the Department of Neurological Surgery. He has pioneered a technique where they use a microscope and an endoscope to see what they are doing without having to resect the brain. They monitor her hearing and optical nerves at the same time so they know immediately if they are affecting them. (Elsewhere, they do this surgery without the cameras and without nerve monitoring and occasionally patients lose their hearing.) Either way, as Dr. Kassam said today, it is surgery in the dark recesses of the brain and is not without risk.
Here is a description of the surgery Dr Kassam has pioneered: http://www.neurosurgery.pitt.edu/minc/cranialnerve/disorders/hemifacial_spasm.html
Susan went through a battery of tests today including electrical stimulation of the facial nerves, hearing tests, vision tests, EKG, an anesthesiology consultation, blood typing (she hates needles), and chest x-rays.

We learned today that the nerve is the size of a strand of spaghetti (angel hair pasta, actually) and connects the facial muscles around the eye, cheek and mouth to the brain stem. The blood vessel is fraying the sheath around the nerve causing the nerve to fire repeatedly even though the brain is not sending a signal. It also short-circuits the nerve. One of the tests today demonstrated that an electrical signal applied directly to a muscle near her mouth also caused the muscle near her eye to spasm even though there is no link between the two because it was jumping across the nerve at the point of impingement. The stimulation was through needles, which you can see from the photo she enjoyed.
I will take Susan in at 5:30am tomorrow and the surgery will be at 8am. The surgery will be approximately 2 hours plus post-op, so you may not see this until after the surgery has started.
I will update you all on how it goes after the surgery.
Marty
2 comments:
Marty and Susan,
I send you my best wishes for a quick fix and speedy recovery. Let me know if there is anything I can do (I know a few neurosurgeons myself, though this guy sounds awesome). We love you guys...
Mary Jo
Thinking of you both, with best wishes for completely successful surgery!
Much love to you both, thanks for doing this blog!
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