MVD Diary - Janine Bell
The first step in resolving my HFS began with an appointment with Dr. Joseph Tsui, a neurologist at the University of British Columbia, on November 22, 2004. I went with a referral from my family doctor and accompanied by my mother and sister. The presence of my family was a great comfort since it afforded not only support but three brains to ask questions and remember all the information. Dr. Tsui proved to be a very nice man, with a calm personality and a ready smile. His knowledge about HFS was impressive and he answered all our questions in detail and with great patience.
He explained that the cause of HFS is a vein or an artery resting on a nerve which aggravates it. Since I often had lengthy breaks between spasms (10 to 20 minutes) I asked him why the aggravation wasn’t happening all the time and he explained that it depended on the excitability of the nerve. Dr. Tsui took his time answering our questions and I did not feel rushed with the appointment. His total confidence in Dr. Honey (who would be my surgeon) reinforced all the great reviews I’d heard about him.
At the end of the appointment Dr. Tsui offered to give me a few injections of Botox. He explained that if I accepted the injections, six months would have to elapse for the Botox to leave my system before I could have surgery. I chose the Botox, wanting some relief from the spasms and feeling sure that six months would elapse before I could have surgery anyway. (I had tried Botox in 2000 and it had worked very well. I tried it a second time in 2001 and it didn’t seem to work at all.) Dr. Tsui’s injections took the edge off the spasms.
Having heard so much about Dr. Honey’s surgical skills, substantiated by Dr. Tsui, I felt very comfortable and confident about the surgery and made my decision there to have the surgery.
I met with Dr. Honey on January 27, 2005. He explained the whole surgical procedure and answered all our questions, fully and patiently. After a quick physical exam the steps towards my surgery were started.
I had a MRI on April 29th, 2005 at Vancouver General Hospital. This involves laying very still in a large machine as it makes loud knocking and banging noises around you. The data came back from this MRI claiming I did NOT have a vascular impingement. Dr. Honey reviewed the data and this is what he wrote:
"I had the opportunity to review Ms. Bell’s MRI scan done April 29th 2005 at Vancouver General Hospital. The report came back that there was no evidence of vascular impingement of the 7th cranial nerve. I reviewed the scans myself and the direction of the right AICA vessel (which appears larger than the left side) does come to a right angle bend right at the root entry zone of the 7th cranial nerve. One branch turns to follow the nerve into the internal auditory meatus and another extends more superiorly. With this right angle turn right at the root entry zone of the 7th cranial nerve, this would be in keeping with a vascular impingement of this nerve and would therefore benefit from microvascular decompression. She is on our waiting list for this." Friday, July 8, 2005 – Pre-Admin at Vancouver General Hospital:
Monday, July 11, 2006 – More Pre-Admin at Vancouver General Hospital:
Monday, July 18, 2005 – "MVD-Day":
Dr. Honey came to see me and asked a few questions. A little later another doctor with a troop of students came and asked the same questions: "Where are you? What day is it? What is your name?" At this point I was feeling great, still under the influence of the anesthesia. When the doctor asked that I follow his finger with my eyes, I found it difficult to follow.
At 2:00 PM I went from the recovery ward to Neuro ICU.
My mother and sister were allowed to visit me soon after I was settled in Neuro ICU. I gleefully demonstrated the disappearance of my HFS. I felt very well, laying there propped up and we chatted for about 1 ½ hours. It was then that the anaesthesia began wearing off and I was given morphine, but it didn’t seem to help. The nurse doubled the dose but it still had no effect. Morphine, it turns out, doesn’t work for some people and unfortunately, I was one of them. Demerol causes me to hallucinate and codeine upsets my stomach, which was already nauseous. All the hospital could offer me was regular strength Tylenol. The pain came and went, and the surges of pain were brutal and lasted for up to 2 hours at a time. It was as if someone had taken a baseball bat to the back of my head. I was kept in the hospital an extra day because of the pain. I admit there were a few times, while in the hospital and during the next two weeks at home, when I had serious doubts about having had the operation because of the pain. It was difficult to sleep in the hospital because of the noise and the pain. They woke me every hour to take my vitals and ask the same questions: "Where are you? What day is it? What is your name?"
During the next two weeks at home I had severe pain on and off. Also nausea and an incredibly sensitive sense of smell. My hearing was also very sensitive. Along with all this, I couldn’t sleep - not always because of the pain - I was an insomniac for months of an inexplicable cause. Because of a bad taste in my mouth everything I ate or drank tasted strange and unpleasant and that also took months to go away. After a week, for just a few days, when I touched the right side of my face it hurt like it was bruised. I looked in the mirror and it looked fine. Dr. Honey explained that there may have been some swelling of the nerves making them sensitive. I spoke in whispers because just the force of talking hurt my head - coughing was out of the question. I shuffled about the house or sat outside in the fresh air. My mother and sister took great care of me.
It took two weeks to reach my turning point, when the pain became more manageable. I kept the tensor bandage on my head for two weeks as instructed by Dr. Honey. After ten days I went to my family doctor to have my stitches removed. She was really impressed by the careful stitching that Dr. Honey had done. I wore the tensor another four days but did manage to get my hair washed before I put it back on, finding blobs of airplane glue still stuck to my scalp!
While I pointed out some negative things in my diary I would like to add that the doctors and nurses in OR were awesome, the nursing staff at VGH were very kind and helpful, the hospital was clean and orderly, the whole experience at the hospital was fantastic – I felt very well taken care of and of course – most importantly - I am "SPASM FREE". I would do it all again without a second thought if I had to.
Update as of 05/06/08:


Permission granted the HFSA to post MVD Diary on website.
Janine Bell, May 16, 2006