MVD Diary - Gail Ferguson

Surgery performed by:   Dr. Gary Goplen
Surgical Location:          Kelowna General Hospital, Kelowna BC, (Canada)
Surgery Date:                 October 03, 2007

Diary prepared by:         Gail Ferguson
Date diary finalized:       November 24, 2007

In May 2005, I noticed a twitching under my left eye. After a few days, it was driving me absolutely crazy as it wouldn’t go away…oh, how I wish now for those days of the minor little twitch under the eye. I visited my doctor many times over the next few months and we tried many things. After the twitch had progressed to the cheek, he referred me to a neurologist and had a CAT scan done.

The visit to the neurologist in May 2006 was uneventful. He quickly diagnosed me with Hemifacial Spasm (HFS), advised what caused it and that there were three options for treatment (or non-treatment). He said I could learn to live with it, get Botox injections have Microvascular Decompression (MVD) surgery. Well it certainly wasn’t the “miracle drug or cure” that I had been hoping for.

I immediately started research on my Internet and in the first couple of searches came across the Hemifacial Spasm Association (HFSA) website. I quickly decided that for many reasons, Botox treatments were not for me. So, that left living with it or MVD surgery. I researched more and more, the spasms got worse and worse and one year after diagnosis, in 2007, I decided that I couldn’t stand it any more. Living with it was out of the question and that left surgery. I contacted my neurologist, who referred me to Dr. Goplen in Kelowna, British Colombia (Canada). Being in Revelstoke, 6 hours away from Vancouver where Dr. Honey has done great work, this was good news to me, that there was a neurosurgeon in Kelowna who may be able to do the surgery. I knew a few people who had family members who knew or had Dr. Goplen care for family members and had never heard so many have such great things to say about a Doctor.

Within two weeks Dr. Goplen's receptionist arranged my appointment for May 31, 2007. From the moment we met him, my husband and I know that he is the one to do my surgery. His staff is friendly and welcoming and he really cares about his patients and the effects that this nasty condition has on their lives. In our first meeting, he went through everything that needed to be done, and actually answered all the questions that I had before I even had to ask them. We agreed that a MRI was the next step, and then if I wanted to go ahead with the surgery he could do it in August 2007. I was amazed that he could do it so quickly. I told him that August 2007 wouldn’t work though, as we had family commitments that would make it very inconvenient for surgery then. We agreed that September 2007 would be better.

I had the MRI on June 21, 2007 and Dr. Goplen spoke to me via phone on June 28th and said that the MRI had shown a large blood vessel leaning on the nerve and that he felt I was an excellent candidate for surgery and predicted very good results. He asked me if I wanted to think about it more before deciding on surgery and I told him, “Heck no, I’ve been thinking about this for a year, let’s get it done!” He said that he would send the booking in for September 2007, to enjoy my summer and he would see me then.

Beginning toward the end of July 2007, the spasms got worse and the headaches increased and it was so hard to do any computer work because it was like doing everything with one eye closed. The headaches made the spasms worse and the worse the spasms were the worse the headaches got. I had a headache for 3 weeks straight and was so irritated and impatient for a surgery date by August 2007 that I could hardly stand it. I have become so grumpy and don’t want to go anywhere in public as I feel like everyone is looking at me. Being at work is tough enough and I don’t even want to leave the house anymore once I'm home.

On August 23, 2007, I contacted Operating Room Booking to inquire about how much notice in advance of surgery I would get, as I needed to finalize arrangements for work, my husband would need time off work, etc. The booking nurse told me that she was still booking in some of Dr. Goplen’s patients from 2006 and still had all of January to July 2007 to book so unless there was special notations on my booking, it would be quite some time. I began to panic! I explained that Dr. Goplen had told me specifically that he could do my surgery in September and that he had said he was sending the booking in for September 2007. I told her that I already had everything arranged for someone to cover for me at work etc. She told me not to panic, that she would take a look at my paperwork and would call me back. As I was on my lunch hour and had to go back to work, I gave her my cell phone number. On the drive back to work, I almost burst into tears thinking I can’t possibly go through this for another few weeks, let alone months! What will I do? How will I live with the severity of the spasms and constant headache for a while longer? What will we do at work about the person we have arranged to cover my many weeks off work if surgery is not in September like we planned? I felt sick to my stomach. About 30 minutes later my cell phone rang and I answered with my heart in my throat. The Operating Room Booking lady asked me if I had a pen and paper handy because she had a date for me, September 12th! 20 days away! I took all my instructions about going to the pre-operative clinic on September 6th to have all the little duckies put in a row and I will need to call on September 11th to find out what time surgery is and what time I need to be there on the 12th. I hung up the phone and was relieved and scared all at the same time. 20 more sleeps and I would have the surgery that hopefully will make my life so much better. I went into my supervisor’s office to tell her that I had a date for my surgery and our executive director told me that she is sure that afterwards I will feel like I have been released from a prison. I thought that was a fitting description of what this condition is like. It is like being in a prison where you have no control over a portion of your body.

I have a stress headache tonight and it has been a long and eventful day…now the countdown begins…20 days pre-op…

Thursday, September 06, 2007, which was to be 6 days pre-op and my pre-surgical screening at the hospital. This began with an ECG, etc., a trip to the lab, paperwork, and all those other great thing. During the interview with the anesthesiologist, he tells me that my blood pressure is dangerously high (averaging 175/126) in the five times they have taken it in two hours. He says that he wants to start me on a beta-blocker, then I need to go back for reassessment on Monday before Wednesday’s scheduled surgery. If the blood pressure is not improved significantly, they will be delaying my surgery for 2 weeks. I was devastated! Not to mention that I felt awful (that would only get worse with the medications). The next morning, Friday, Dr. Goplen called and left a message that this type of surgery is too dangerous to do with high blood pressure, so he is delaying my surgery for two weeks. He says he has left a message for my family doctor and that I should check in with him. More devastation! I see my family doctor on Monday and the blood pressure is coming down nicely and they reschedule my surgery for September 26th! Once again, I find myself 14 days pre-op.

On September 21, 2007, the Friday prior to what was to be my September 26, 2007 MVD, Operating Room Booking called me at work to inform me that there was a booking issue and that my surgery had once again been delayed, this time to October 3rd. I’ve just about had enough at this point and one week later, I call Operating Room Booking to check and make sure that I am indeed booked for October 3 and there will be no change. I am confirmed!

 

Wednesday, October 03, 2007 – "MVD DAY":

My arrival time at the hospital was 7 am and I arrived in time. After changing into the wonderful wardrobe that is provided, filling out more paperwork and a last blood pressure check, I was sent back to the Operating Room Waiting room to wait for them to be ready for me. At approximately 8:40 am, a gurney with a driver arrives for me outside the door and I am on my way to surgery. I meet the nurses who will help Dr. Goplen and also have a meeting in the hallway with the anesthesiologist, who explains all the IV’s and monitoring that will be used during and after surgery. Within minutes, I am hooked up and off to la la land. I don’t know what time I woke up in recovery, I just know that I was asking for the lights to be turned off and looking for something to vomit in. I suffered from severe nausea and vomiting other times after general anesthetic and this was no exception. Most importantly however, I believed that I was "SPASM FREE"! I hated the things on my legs that kept filling with air and massaging my legs. I was uncomfortable and grumpy and this lasted for several hours. I spent the night in the Surgical Critical Care Unit and then was on the regular floor for a few days. I was discharged from the hospital on October 8th (my 19th Wedding Anniversary), 5 days post-op.

 

1 Week Post-Op.:

I have developed numbness/paralysis on the MVD side of my face. However annoying, I have faith that it is only temporary and I'm marching on through this also. I have severe headaches and pain at night and alternate hours of sleeping between my bed and the recliner chair in the front room. I still have no appetite and at this point, I really am not sure I made the right choice.

 

2 Weeks Post-Op.:

I had the staples out today at my doctor’s office and in spite of being sick, tired and paralyzed on the left side of my face, he gently told me that I should hang in there and that he is sure that there will be a time that I am glad I did it. We had worked together for this for a long time and I just had to be patient with the results. New prescription for pain medications for headaches and pain at night which has made all the difference in the world as I am now able to get a few hours sleep at a time.

 

3 Weeks Post-Op.:

I have much less paralysis on the left side of the face now, It seems as if one day an area of the face is tingling and twitchy, and then by the next day, that area is “awake” again. The “twitchiness” in each area as it is “waking up” is very scary, but thankfully it seems to be minor and temporary.

 

7 Weeks Post-Op.:

I am preparing to go back to work, as I feel capable of getting back to things now. I am slightly headachy in the mornings, but think it is time to get back to life. Recovery was a rough road for me, much rougher it seems than for most people. That was just me and my body and how it reacted to the surgery and trauma. I am grateful to this site and the people here who are so generous with their sharing and helped me to make a huge decision in my life. Thank you very much. I truly didn’t realize the extent of the affects that this condition has had on my life. Until I was "SPASM FREE". I had no realization that HFS had made me a whole different person than the one I really am! This surgery has given my family and myself the real me back again. I am grateful to my surgeon’s skilled hands and the abilities he was blessed with. After it all, am I glad that I did it? WITHOUT A DOUBT! I WOULDN’T CHANGE A THING!

Permission granted the HFSA to post MVD Diary on website.
Gail Ferguson, November 25, 2007

 

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