MVD Diary - Katherine Hughes
I started typing this some five weeks after the actual MVD, but the timeline should be mostly accurate. MVD is a journey on its own… but so is the process of actually getting to the surgery.
Summer, 2002:
After going through over three years of doctors, I finally decided to go online to look for more information. I knew that this was more than “just a twitch,” I knew that I needed more than to “try to relax,” and I didn’t want to just “learn to live with it,” as one doctor so kindly suggested. I went to Google, typed in the words “facial twitch” – and within half an hour I had my diagnosis. I sat in front of the computer and cried, knowing that it wasn’t just me.That same day I found references to MVD, although it took me longer to find out what the letters stood for. I found the name of Dr. Gail Rosseau here in Chicago, and through some other searching I was able to find a way to contact her through email. I sent her a brief note telling her my symptoms and asked if she would be able to give me any further information. She shocked the life out of me by calling my house and leaving a message. And when I rang the number she left, I got her on the phone – not a nurse, not a receptionist, but a real live neurosurgeon. She told me that I wasn’t out of my mind, that my symptoms were real, and she had seen them before. What a relief to hear someone say, “It isn’t in your mind… even though it is in your head.” She described MVD to me, and suddenly it sounded a little more intimidating than I had imagined, especially when she told me it would take four to six weeks to recover. I put the idea on the back burner and decided to try some alternative medicine. Homeopathy, magnets taped to my ears, and several visits involving an electrical device that made some interesting noises when it touched my ear – all designed to detoxify and rebalance my system. And maybe they did, but the spasms were as strong as ever.
February, 2003:
I sing with Bel Canto Chorus of Milwaukee, and for the first two months of the year we were in intense rehearsals with Bach’s Mass in B Minor. I spent a lot of extra time working on the music, but the spasms were getting to the place where my right eye would almost shut while I was singing. I’m short. I’m on the front row. And one night of performance I found myself almost wishing that I hadn’t decided to sing this glorious piece, because my face was so solidly in spasm. After the concerts were over, I called Dr. Rosseau again and scheduled an appointment.March 18, 2003:
I gathered up my old MRI films and went to see the neurosurgeon with my husband Charles. This small blonde woman walked into the exam room and introduced herself as Gail Rosseau. She sat down and asked me what my symptoms had been like and how they affected my life, and then understood why talking about it was so emotional for me. She offered me alternatives, such as Botox® administration, which I didn’t want to try. We then decided on trying Baclofen, which is an anti-spastic drug. I filled the prescription that night and started taking it. I also came home with orders for the testing I would need prior to surgery, if I decided I wanted to go that way.March 20, 2003:
I called Dr. Rosseau back and asked her when I could schedule the surgery. I called my mother and told her what I was planning. Mothers don’t take well to hearing that their children are having brain surgery. I called Dr. Rosseau again and told her that my mother wasn’t doing well with the news. Dr. Rosseau called my mother and calmed her down.March 21, 2003:
Everything was in place. Surgery was scheduled for April 14, 2003, at the Neurologic and Orthopedic Institute of Chicago. Now to schedule the pre-surgical testing… MRI on the 24th, Audiogram on the 31st.March 31, 2003 - Audiogram:
Audiogram day. It turned out that I had fabulous hearing, in spite of all those rock concerts in my younger days. Who knew?April 01, 2003:
Another meeting with Dr. Rosseau, this time with my mother and my teenaged son Christopher, mostly to increase their comfort level. Dr. Rosseau brought in a model of a human head and showed everyone where the incision would be and where the actual decompression would occur. Then she drew a line on my head to show how big the incision would be.Friday, April 11, 2003:
The tension was getting to me. Anticipation of surgery and all sorts of dramatic and unpleasant consequences, sort of like the things you see on made-for-TV movies. I thought that if I could just get through the couple of hours of waiting on the morning of the surgery, I could handle everything else. That afternoon I got a call from a scheduling nurse at the hospital, who told me that I was one of two patients scheduled for surgery on April 14, so I might not be the first one in. This was not happy news for me. I was instructed to not eat anything after midnight the day before the surgery, and to be at the hospital at 6:00 a.m.Saturday, April 12, 2003:
Colored my hair… who knew how soon I’d be able to do it again.Sunday, April 13, 2003 - Day before MVD:
My pastor formed a prayer circle after church and prayed specifically for my hearing and my full recovery from surgery.Monday, April 14, 2003 - "MVD-Day":
We – my mother, Charles, Christopher and I left our house at 4:30 a.m., and arrived at the hospital at about 5:40.a.m. It amazed me to see people cruising around the surgical admitting area like this was a normal hour to be awake. They gave me a gown and a bed, and told me that I was the second surgery of the day. By this time I had reached my Zen calm point and was ready to deal with almost anything, which is unusual for me. My family wandered between the waiting area and my room, and I got periodic updates on the surgery in front of me. Her case was much tougher than mine was, something involving pressure on the brainstem because the entire brain was shifting. My situation seemed comparatively simple. 12:30 p.m.: The orderly arrived and said it was time for me to go to surgery. My family hugged me before I left and my mother burst into tears, which of course triggered my own. The orderly talked to me about all sorts of things on the way into the preparation area, where the IV was started. I was laying on a gurney with tears running into my ears, so a nurse went to find me tissues. When she came back, she handed me the tissues and said sympathetically, “It’s really time to get this surgery done, isn’t it?” Sometime around 2:00 p.m., I went into surgery. The procedure was finished somewhere around 5:30 p.m. I don’t know what time I woke up in recovery, but I felt queasy and my head hurt. Someone put a button in my hand and told me that was my morphine for pain control. I felt rotten and hit the button as frequently as I could. I don’t know when it was that a nurse said, “Let me see your eyes… yep, pinpoint pupils, let’s just be turning down that morphine dose….” My family said they got to see me about 8:00 p.m., and I remember them being there, but I was still really drowsy and didn’t have much of a voice after several hours of intubation. They came back a little later and my mother said I already sounded a lot better. I asked my husband to dig out the little soft pillow I had packed for the stay. The family was finally able to leave the hospital at about 10:30 p.m. April 14 into the 15th: I was in intensive care, so that meant visits from nurses at least every hour. They took blood pressure and reassured me that I was doing fine, stroked my forehead and fed me ice chips. I stopped hitting the morphine button at 10:30 p.m. because I was aware enough to feel the stuff hit my system, and I hated that feeling worse than I feared any pain. My face was spasm free. I hadn’t had a quiet face in four years.Tuesday, April 15, 2003 – 1 Day Post-Op:
Somewhere around 4:00 a.m., a woman arrived to give me a bath. She scrubbed all my limbs and kept me warm at the same time. Then she rolled me over so that she could do my back, and said, “Oh, honey, you’ve been sleeping on wrinkly sheets.” Then she gave me probably the best back scrub of my entire life. A bath that early in the morning sounds appalling – but this woman was so lovely and so motherly, that I felt entirely loved and nurtured.I also still felt queasy, and dizzy on top of it. The nausea wasn’t enough to make me throw up, and I hadn’t eaten in 36 hours anyway, but it made the prospect of getting out of bed daunting. The catheter was pulled out in the morning, which meant I would have to use a bedpan or a commode – there were no bathrooms in the ICU rooms. I tried the bedpan, I really did, but that meant overcoming a lifetime of conditioning, and I flat could not make myself urinate while still in bed. So it was the commode for me. First time out of bed, I had an occupational therapist and a nurse teaching me how to get out of bed and stand up. The occupational therapist was maybe all of 90 pounds… but one feel of her grip and I had complete trust in her ability to help me do what I needed to do.
When breakfast arrived, I could not have been less interested. Absolutely zero appetite, and there wasn’t much on that tray that interested me anyway, given that I was on orders for liquids only. Broth, Jell-O, a juice bar. I tried anyway – broth too salty, juice bar too sweet, Jell-O too jiggly. I gave up. The nurses were concerned that I wasn’t eating, and gave me anti-nausea drugs. I took those, but turned down any offers for painkillers because I hadn’t eaten. A couple of years ago I had a really rough experience taking Vicodin on an empty stomach, and I wasn’t looking for a repeat. The pain was minimal, so the painkillers weren’t essential anyway. They tried three different nausea medications that day, and it felt like none of them even touched it. Although I perceived it as nausea, I think the real problem was the post-surgical dizziness. Dizziness veers into nausea pretty easily.
My family was in for visits through the day, although I slept through a lot of their time there. I couldn’t wear my glasses for the first part of the day because of the bandages around my head, so watching television or reading were out. As tired and dizzy as I was, I wouldn’t have been able to focus on anything even if I had my glasses on. The big bandages came off that afternoon and the incision itself was covered. My hair was up in a highly attractive matted knot on the top of my head, and Charles observed that I looked like a demented Pebbles from the Flintstones.
That night, I woke up to a blistering headache, the worst pain I had since the surgery. It felt like someone had clamped a circle of pain around the top of my head. The area around the incision was fine… and as I thought about it, it occurred to me that I hadn’t had any caffeine in over two days. I was having a caffeine withdrawal headache. I lay in bed and felt like an idiot for having worse pain from caffeine withdrawal than I ever had from brain surgery. But at least my face was quiet.
Wednesday, April 16, 2003 – 2 Days Post-Op:
The physical therapist showed up that day to get me walking. As I rolled over to talk to him, I felt severe spasms start up on the right side of my face. It was a horrible feeling, to have gone through a couple of hard days and feel like it was for nothing… I tried to remind myself that the surgery didn’t always yield immediate results, that full recovery sometimes took weeks or months. The therapist told me lousy jokes and took my mind off the work I was doing just trying to stay vertical. I managed a short flight of stairs that day. I also had a few periods of just sitting in a chair, which at that point was tougher than it sounded. The dizziness was still with me, and I was starting to notice a sensation of fullness in my right ear. This whole surgery thing was starting to seem like a really bad idea.And I still had no appetite. I was drinking plenty of water and staying hydrated, so the nurses didn’t give me too hard a time. The tray of liquids was still icky. I asked for saltines and a carton of milk, and was able to get down about half of each. It was progress. I was moved into a regular hospital room that afternoon.
Thursday, April 17, 2003 – 3 Days Post-Op:
Face was still in spasm, but I got to have a shower and wash my hair. My tiny occupational therapist set up the shower room for me, so that I could sit and shower. The demented Pebbles topknot finally came down, but it probably took me twenty minutes to untangle my hair. I came back to my room dressed in real clothes for the first time in days and tried to act like everything was normal. The physical therapist came by again, and this time got into a conversation with my husband about Boy Scouts. It was wonderful to not be the center of attention in the room. At lunch that day I was able to eat the juice bar, a whole cracker, and a small cup of iced tea.That afternoon I was discharged and sent home, with instructions that I should expect constipation after the anesthesia and inactivity. I was advised to use the appropriate medications and eat lots of fruit. I smiled and nodded, but I hadn’t eaten anything of consequence in four days, so it didn’t really concern me. I just wanted to go home and sleep in my own bed. I was still wobbly on my feet, but the dizziness seemed to be a little less. The perception of fullness in my ear seemed to be merely a perception, as I could still hear quiet noises. It was some comfort.
Friday, April 18, 2003 – 4 Days Post-Op:
Family headed back to normal life, and I got out of bed just in time for my morning nap on the couch. Crackers tasted pretty good, but all I wanted to drink was water. Face still in spasm.
Saturday, April 19, 2003 – 5 Days Post-Op:
Family at home, watching me nap… big fun all around. My mother brought over chicken soup with homemade noodles for dinner. And yes, there was my appetite at long last. It just wanted "mom food" instead of "hospital food".
One-week Post-Op:
I discover that I’m up to doing one thing a day…. Easter Sunday I got dressed and went to church for the breakfast before the service and then sang the Hallelujah Chorus with the choir at the end of the service, in spite of my voice being at about a quarter its normal strength. My mother fussed and fretted about my overdoing it, but I felt mostly okay and thought she was over-reacting. Next day, turns out my mother was right. I was exhausted. I was flattened. I wanted nothing more than to lie around the house. Tuesday was the day for the stitches to come out. And my bowels had awakened, but there was nothing making its way out. The pain was spectacular. When I called Dr. Rosseau, she encouraged me to go ahead and try coming to get the stitches out. I made the trip with the car seat fully reclined, anything to take the pressure off of my lower intestines. I limped into the hospital, and for some reason things finally started moving in there. The sutures were removed with a minimum of pain and I went home with a prescription for laxatives. The next day I realized that there is nothing like a nearly daylong struggle with your bowels to knock you flat for a while. I’m timing the spasms in my face at night, and they’re going about 30 seconds each. I still want my little soft pillow, even at night in my own bed, just to cushion the incision. I’m taking Bextra and Flexeril to relieve some of the discomfort around the incision itself.
Two-weeks Post-Op:
Up from one thing a day to two things a day. But I’m driving again, so now at least one of those things can be a trip to the grocery store. I shop with Christopher so that I don’t have to lift anything heavy. I’m cooking for the family at least a little bit, and my mother volunteers to come and clean my house. The spasms are subsiding at night to being only a few seconds long. By the end of the week I’m out in the back yard planting my new seedlings. Yeah, I’m sitting on the ground… but I’m doing yard work, by golly. And I’m up to walking about a mile by the end of the week. I don’t need to take anything for neck discomfort this week.
Three-weeks Post-Op:
The spasms that used to afflict me last thing at night and first thing in the morning are gone. I can go to sleep at night without the movement or the drumming in my ear. Eating and singing still trigger the spasms, but not as bad as they were. I increase my walking distance up to three miles. And I discover that there is such a thing as enough sitting around the house… enough television, enough knitting, enough of all of it. I’m getting restless, even though I know my energy level still isn’t fully up, so I make lunch dates. Charles and I do a long walk toward the end of the week and end up out in the back yard again, this time putting in seedlings of native plant species.
Four-weeks Post-Op:
I get the blessing from Dr. Rosseau to go back to work next week. I’m able to walk four miles and could probably go farther, except that I’m getting bored with walking for that length of time. I have my repeat Audiogram, which could be a photocopy of the one I had before the surgery; my hearing is completely unaffected by the surgery and the sensation of fullness is less every week. The spasms are still diminishing, at least until I get some highly unpleasant news from people I work with. I spend the last weekend before returning to work emotionally distraught, with my face in motion, and have to remind myself that it’s still better than it was. Now I can actually cry without pulling the entire side of my face into a grimace.
Five-weeks Post-Op:
I’m back at work on Monday and feeling good, but I’m not as strong as I think I am. I run from floor to floor and building to building all morning, and realize at lunch that it feels far better than it should to sit down. On Tuesday I have a whole series of surgical follow-up appointments. Physical therapy declares that I don’t need them for anything, since my mobility and balance are fine. Dr. Rosseau looks at the new MRI and says everything looks as it should. She also reassures me that it can take six months or more for the spasms to disappear entirely. I have one question about a sensation I’m having in the back of my head, where it feels like the bone is shifting around a little bit… Dr. Rosseau tells me that it takes about three months for a full fibrous connection to form after the surgery, so the movement is nothing to worry about. It doesn’t bother me all that much, but completely heebs out my husband and my coworkers.
Seven-weeks Post-Op:
Seven weeks to the day after my surgery, I'm in Santa Fe NM, singing with the Berkshire Choral Festival. The spasms seem somewhat more irritating right now, but I don't know if it's the altitude (7,000 feet) or the stress of working hard on new music (Handel Coronation Anthems and Mozart Vespers). Outside of the spasms I feel good and I can hear everyone around me. I think the spasms must be worse to me than they look to other people, because the few people I tell about my HFS are surprised to hear of it. And they're shocked/impressed/appalled that I had BRAIN SURGERY seven weeks ago.
Ten-weeks Post-Op:
Not quite ten weeks after the surgery, I'm in a kayak in Lake Superior, contemplating the wisdom of throwing myself out of a boat into the icy waters. I'm attending the Inland Sea Kayaking Symposium, after getting some wild idea that kayaking looked like fun and I should learn how to do it. Paddling around the harbor in Bayfield, WI certainly IS fun, but then we get to the section on wet exits and self-rescue, and suddenly the fun is draining away. No way around it, though - if I want to spend any time in a kayak, I have to plan on falling out at some point, and I'd better be ready for it when it happens. I throw myself out of the boat and do a perfect wet exit - gravity is on your side getting out of a boat. Then I discover the hard way that the personal flotation device should be well-adjusted before you hit the water, as my PFD attempts to head to the surface of Lake Superior without me. Getting back into the boat... let's just say that gravity is no longer on your side. I'm still having spasms but not caring. I paddle around the sea caves that afternoon, attend a fish boil that night, and work myself into utter exhaustion. And I feel really REALLY good - alive and part of the world and fully engaged again. That odd bone-shifting sensation at the back of my head is gone.
Three months Post-Op:
I attend the HFSA meeting in Pittsburgh in July. I'm finally able to see what HFS looks like on a face other than mine. And I realize that even though I'm still feeling spasms, they're not nearly as apparent to other people as they are to me. Several people say to me, "But I thought you said you weren't spasm-free" and tell me that they can't see any movement. I know it's still there. But after listening to all of the talks from all of the surgeons at this meeting, I realize that I'm probably 75% improved over where I started before the surgery. I'm reassured and taking the long view... and confident that the spasms will continue to decrease over the next few months.