Today is my ONE YEAR ANNIVERSARY of my BRAIN SURGERY that I had at Vanderbilt Medical Center. Amazing how time heals. I had HFS or Hemifacial Spasms which is a rare neuromuscular disease characterized by irregular, involuntary muscle contractions (spasms) on one side (hemi-) of the face (-facial). Also with me I had a constant buzzing in my right ear that would keep me awake at night as would the twitching. In sleep you are in a dream-state that everything is all perfect but then wake up to the buzzing and constant twitching. This is also considered a social disease because it wont kill you but eventually people who have it retreat to their homes due to uncontrollable spasms and constant stares and whispers. There is no cure for this disease. Fortunate for me, very few knew I had HFS because of my long hair I used it to keep the right side of my face covered - the side that had almost continuous spasms. It started out simple around my eye and stress was the first diagnosis but as it spread to my upper lid and down my face to my mouth and into my chin. The neurosurgeon first tried anticonvulsants which is the protocol then tried Botox injections which exchange weakness for cessation of spasms of the treated facial musculature. I choose to ditch the anitconvulsants since all I wanted to do was sleep (Lord knows I dont have time to sleep) and Botox injections and have Microvascular decompression surgery which relieves pressure on the facial nerve. The surgery is a delicate surgical procedure making a dime-size opening behind the ear - mine wasnt that small but think from of top of the ear cut down in the shape of your ear to your neck and it looked rough initially. Through this opening, surgeons insert a 2.7 mm endoscope. They can then identify the problem and perform the procedure - meticulously separating the nerve and blood vessel, and inserting a Teflon disk between them (all I could think of was the teflon sponge from the sink). I was the unusual patient. While the risks for the surgery can be great - swelling, blood vessel of the brain stem blocked, stroke resulting from a disturbance in the blood vessels supplying blood to the brain, blockage of blood flow to the brain, death or hearing loss, for me, it was worth this risks, within 2 hours after surgery in the ICU, I was on my iPad sending work emails and texting on my phone :) The nurse came in the first night in ICU and announced she wasnt coming in on her regular rounds because obviously I didnt need to be in there because she could hear laughter from my friend Leslie and me while she was at the nurses station. I was moved the next day to a regular room and released early the next morning when the surgeon came in I was standing at the sink, dressed in my shorts and t-shirt, brushing my teeth. I gained plenty of weight (for me anyway and looking back to all the pics) from all the steroids I had (IV and two rounds of oral dosages). Since I have started working out late night I have lost almost all that weight and am feeling great. The day I returned from the hospital I spotted a dog running loose in front of my house and I took off trying to catch her in the extreme heat. I recruited friends here at the house (Leslie and Paul) to help me - afterall they wouldnt let me chase her on my own for fear of me falling. We worked for a long time trying to catch her. That really exhausted me only three days after surgery. SIX weeks after surgery I attended a college conference in New York then the next weekend another in Chattanooga and then continued week after week. Was that a smart thing to do, probably not because I really over-did. I see now how unsteady on my feet I was for the first 2 or 3 months and at the 6 month mark how everything was different including no more spasms. I have told very few people the reason for my surgery but I wanted to share in case this could help someone with this disease. If you dont do research the chances of an internist diagnosing this is very rare and even for a neosurgeon that hasnt seen this disease the diagnosis rate is very low. It has been a journey and Im happy I am at the year mark!
Posted on: Thu, 21 Aug 2014 15:49:10 +0000
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