MVD #2 Diary - Katherine Hughes
I had my first MVD in April 2003 with Gail Rosseau in Chicago who had trained with Dr. Peter Jannetta and was a shining example of what I’ve come to call “the Jannetta Effect”. It seems that every doctor he has personally trained shows an unbeatable combination of world-class surgical skills and deep compassion. I was spasm-free for a day after surgery, and then they came back hard while I was still in the hospital. In spite of the disappointment, I embraced the idea that the actual healing can take some time, and I settled in for the six weeks or so that I thought it would take. The weeks stretched into months, and then a year, and I started thinking about my options if the spasms didn’t go away. At that point I decided to give it two years. In April of 2005 I started looking into having the surgery done again. I had no reason to believe that my first surgeon had done anything less than a first-class job. I went on the assumption that for whatever reason, my case was a problem child that required the most experienced surgeon I could lay my hands on. And for me that was Dr. Peter Jannetta. I called his office and got guidance about what testing would be required. It was the usual MRI, plus an EMG for lateral spread. I received a packet from Ann Wilkinson, Dr. Jannetta's Nurse Coordinator, with the necessary prescriptions and a pile of information about Allegheny Hospital and area hotels. The MRI was simple enough, but the EMG turned out to be a real adventure. I found a neurologist specializing in EMGs about three miles from my workplace and called for an appointment. I asked specifically for the procedure I would need, and read the instructions directly from the prescription, and was assured that yes, the doctor knew exactly what to do. But when I got there, the neurologist had never done this type of EMG before, didn’t know the procedure, and literally sat in the office with a textbook open on his lap looking for information. It wasn’t my most reassuring office visit. He finally snapped the book shut, told me he would try to figure it out, but if he couldn’t, no other doctor in Chicago would be able to either. He said he wouldn’t charge me for this visit (thanks!) and that the office would be in touch with me to schedule another appointment once he figured out what actually needed to be done. Small surprise, the office called me a few days later to say that they wouldn’t be able to help me. At that point I called Dr. Gail Rosseau and enlisted her help in the whole enterprise of getting me to Pittsburgh. She remained supportive of my decision and absolutely adamant that Dr. Jannetta be the only doctor to do the surgery – and she also connected me with Dr. Wang at CINN to do the EMG. The experience with him was entirely positive, outside of the unsettling sensation of having needles placed in my face. During the EMG, he had equipment hooked up so that I could actually hear the spasms happening. And I showed classic lateral spread – if he stimulated the eye muscles, the mouth muscles went nuts; if he stimulated the mouth muscles, the eye muscles went too. He cheerily informed me that yes, I did have lateral spread. And in a way it was kind of a relief, because I thought, what would I do after all this time if the spasms weren’t HFS any more? All of the results went to Dr. Jannetta’s office, and they responded almost immediately that surgery was indicated. After checking the various schedules, I made an appointment for July 14, 2005, coincidentally Bastille Day, but with any luck my own day of liberation. To ease the strain on my family, with various work and social schedules, I asked my mother to come with me to Pittsburgh. We drove out on July 11 and checked into the Greentree Suites that evening. The suite was very comfortable, with a kitchenette, a queen-sized bed, and a foldout bed in the living room area. We went shopping for snacks that evening and had dinner at a South American restaurant in Shadyside, with one of my college friends now living in Pittsburgh. Tuesday morning was our consult with Dr. Jannetta himself. We showed up to a crowded office, and the appointments were running behind. At one point, Dr. Jannetta poked his head out the door into the waiting room and said, “I’m running late, but I’ll take the same extra time when I get to each of you.” And knowing that it was true, those of us in the waiting room were able to wait patiently. When we did get in, Dr. Jannetta assessed my situation and observed that I had some facial weakness because of the HFS. He also told me that the weakness would be permanent. At that point I didn’t care. I just wanted the spasms gone. And while he was answering all my questions, he was also completely charming and reassuring my mother, who was doing her very best to be brave in spite of her baby undergoing brain surgery. Wednesday, I got a phone call from a coworker telling me that my employer had just done a massive layoff in my absence – 700 people walked to the front gate – but that our jobs were still secure. It was good to know that I still had insurance! That afternoon my husband and son arrived… although I had tried to simplify things for them by having my mother come with me, they both decided that they really, REALLY needed to be there for the surgery itself, and they came out anyway. It turned out that I really wanted them there more than I had realized. Thursday… surgery day. I drove us all to the hospital because coping with Pittsburgh traffic would keep me from fidgeting. We left the hotel around 6:30 AM, and by 7:30 I was admitted to the hospital and on my way in. The PA came in and marked the side of my head with an X, just to make sure that the surgery happened in the correct place. I said goodbye to my family and then cried on the way into surgery, just like the first time I did this. Allegheny is a big hospital and there were a lot of us on our way in for various surgeries. Dr. Jannetta came over before I got any of the drugs and smiled and patted my hand and told me that everything was going to be fine. And shortly after that I was knocked out. I understand from my family that Dr. Jannetta essentially kicked them out of the hospital to go find lunch. There’s an Italian place close to the hospital that he recommended, where my family had lunch – and when they told the staff there that Dr. Jannetta had sent them, they were welcomed like long-lost relatives. I came to in recovery and listened to the activity around me, and waited for my face to do something. It didn’t. It was fully quiet for the first time in seven years. I will never forget the sensation of waiting for a spasm to start… and waiting… and waiting. And when I finally saw my family afterwards, I could smile and talk and my face was my own again. I was moved to a regular room in Allegheny, with a roommate who had also had MVD, but hers was for trigeminal neuralgia. She came roaring out of surgery feeling fantastic, while I had the usual post-surgical punies – tired and no interest in food. Once everyone left and the place quieted down, I went off to sleep. I was awakened a few hours later by the sounds of my roommate getting terribly ill – her surgical experience had caught up with her and she was absolutely wretched, too sick to call the nurse. I called the nurse for her and they got everything cleaned up, but my roommate remained weak for the rest of the time we shared a room. I wasn’t interested in any of the hospital food while I was there, other than some crackers and water. My husband and son came to check on me Friday morning before taking off for the drive back to Chicago, and were delighted to see that my face was still behaving normally. My mother sat with me for the rest of my stay on Friday, and turned into the supplemental nurse for our room, taking care of both my roommate and me. I was released from the hospital that afternoon, having spent something less than 33 hours from the time of admission. It still blows me away that brain surgery can be done successfully in that time frame. Friday evening was spent back at the hotel, and I needed only regular Tylenol to manage the pain, which was really just around the incision. I could feel little tremors in my face, but nothing that blossomed into a full spasm. We spent Saturday at the hotel as well, with my mother trying to tempt me to eat. I got down some cottage cheese, a little fruit, and a little yogurt. I was having some problems with swallowing, as my throat was sensitive following intubation – I could eat, but I had to be more aware of it to avoid choking. Stuff with crumbs, like crackers, was pretty much out of the question during that time. Dr. Gail Rosseau called me on Saturday to find out how I was doing. It took some effort to find me – she called my house and got my cell phone number from my son, discovered the hard way that he had given her his phone number instead of mine, and then was finally able to get through on my cell phone. Sunday we went out to a local mall, and explored the Pittsburgh Ikea. And on Monday we went out again with my college friend, although my mother told me sternly on Monday afternoon that I would have to take a nap first because I needed my rest. It was like being four years old again, and I responded with appropriate maturity: “But I’m not tired!” I left out the foot-stomping part – and I did end up taking a nap in spite of myself. Tuesday was the follow-up visit with Dr. Jannetta, and there were smiles all around. It turned out that the muscle weakness that was supposedly going to be permanent had in fact improved. There were NO SPASMS and my face was symmetrical. The entire medical team got huge hugs from both my mother and me. We drove back to Chicago on Wednesday, July 20, with frequent breaks for me to get something to eat and move around a bit. The only lingering after-effects of my surgery were throat sensitivity and an odd taste in my mouth, which were significant enough to send me to the ENT for evaluation. I didn’t sing with my chorus or take voice lessons for three months after the surgery. A number of singers I’ve talked to have told me that throat sensitivity following surgery is very common because of the intubation. Once the ENT told me that there wasn’t any sort of infection causing the odd taste, I dealt with that with gum and breath mints, and it faded in less than two months. As of April 2007, I remain SPASM FREE. I notice the occasional tremble when I’m very fatigued, but I really don’t think that it has anything to do with HFS – these are more the normal twitches of a tired face and mind. There have been enormous stresses in the time since my second MVD – I sent my only child to college in August 2006, and my husband died the following month – but there has been no sign of the spasms returning in spite of the emotional strains of the time.