MVD Diary - Sue Cohen
Surgery performed by: Dr. Chandranath Sen
Surgical Location: St. Luke's Roosevelt Hospital, New York, NY (USA)
Surgery Date: June 29, 2009
Diary prepared by: Sue Cohen
Date diary finalized: November 4, 2009
I first noticed a persistent sensation of middle ear “fluttering” in the late 1990s (I was in my mid-50s), and saw an Otologist. He said he’d heard of such a thing and knew of no treatment for it. (My hearing was. and continues to be. better than average.) A few years later when my eyelid on the same side began persistently fluttering, I saw a Neurologist. He diagnosed early HFS and described treatment options. We agreed that none was called for at that point. A few years later it had spread downward to the cheek and in 2005 the Neurologist briefly tried Baclofen (muscle relaxer) and then Clonozepam (anti-anxiety drug). Neither produced any lasting improvement and both made me feel unpleasantly insulated from life. After that I wore a custom dental appliance on my lower teeth, which provided minimal improvement for just a year or so. Finally, in the last two years, I tried several treatments with Botox. They distorted my face as much as the spasms had, only in a different way, and stole my smile, even when the dose was lessened. At the same time, the improvement to the spasms was minimal.
With the disappointment of failed Botox, I found this website (Hemifacial Spasm Association) and began reading the Diaries. Because I’m also in treatment for advanced chronic cancer, I doubted that I would take on elective MVD surgery. However, by Spring 2009 the spasms were so severe, disfiguring, frequent, lasting and exhausting that I concluded it wasn’t worth living with them.
Dr. Chandranath Sen performed the MVD surgery June 29, 2009 at St. Luke’s Hospital in New York City. Because the offending artery was a “firehose,” he created two slings and fastened them to the dura to hold the artery away from the nerve. He felt that the strength of the pumping of this large artery would have dislodged the conventional pad that is normally used to separate the nerve and artery. I woke up SPASM FREE. My hospital recovery was normal and I went home on the third day post-op.
For most of the next month (July 2009) I was tired but okay enough to resume chemotherapy after a week or two. When I developed fever and headaches at the beginning of August 2009, Chemotherapy was suspended and I had two separate hospitalizations for the diagnosis and treatment of Meningitis. Dr. Sen felt the infection had been introduced at surgery. I came home in September and gave myself two weeks of twice-daily IV antibiotics and more weeks of oral steroids. The side effects of the drugs were a big part of my life---everything was slow and fuzzy, week after week. (Chemotherapy resumed at the end of October 2009 after this unplanned 10-week interruption.)
As I write this on November 4, I’m not yet entirely “myself” but I am more active and independent (reading, gardening, driving, etc.). I have occasional days of frequent middle ear “fluttering, and just this week I've had two small spasms.
Permission granted the HFSA to post MVD Diary on website.
Sue Cohen, November 04, 2009
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