MVD Diary - Danna W. Caraway
Tuesday, December 03, 2002 - Date of Departure/Arrival:
My husband and I left the Birmingham, Alabama airport at 8:35 AM – the plane was late leaving but the pilot made up most of the time and we arrived in Pittsburgh at 11:00 AM. We had made plans to stay at the Hawthorn Suites which is about 14 miles from the airport and, as instructed, called for their shuttle to pick us up. We were worried about getting to Dr. Jannetta’s office on time for my 1:00 PM appointment since the shuttle took us to the Hawthorn Suites first, where we left our luggage with the desk, and then another shuttle took us to Dr. Jannetta’s office. We were on time, if a bit breathless, and as soon as I registered at the desk Kathy Evans called us into a small room, offered us coffee and said the doctors would be in shortly. I had called this office so many times and talked to Kathy prior to my surgery that I felt as if she were an old friend. Kathy is a small dynamo and seems to keep the office and patients all running according to schedule. I was excited about getting to meet Dr. Jannetta at last. Dr. Casey came in first and I gave him an account of my HFS history and he had the records and tests with him, which I had sent ahead. I had an idea these neurosurgeons would be a bit intimidating but from the moment I went in and met them I felt totally at ease and at peace. Later Dr. Jannetta came in and I felt his warmth and knew for sure I was in the right hands. They explained the procedure to me and demonstrated with a model of the brain where they would be working, what to expect post-op, and possible complications (as all surgeons are required to do). I was now ready to get the surgery over with and I felt free of fear for the first time in months. I had to have the hearing tests I had sent redone and I went to an office in the same building and the tests were done quickly. By now, it was 4:30 PM and we had not eaten lunch; all we had was a small bag of pretzels on the plane, so we went to the hospital cafeteria at an hour too late for lunch and too early for dinner. It was apparently an entrée left from lunch and rather tasteless. My advice would be to order a hamburger from the Grill if it is an off-hour. The excitement of the day had tired us and we called the shuttle and returned to our hotel with which we were pleased.
Wednesday, December 04, 2002 - Day before MVD:
We enjoyed a complimentary breakfast at the Hawthorn Inn – cold cereals, hot cereals, bagels, English muffins, blueberry pancakes, juices and coffee – something for everyone. Since my hearing tests had been redone on Tuesday we had most of Wednesday free. A group from our Inn was taking the shuttle to Robinson Mall and we decided to go as well since I had done very little Christmas shopping prior to going to Pittsburgh. Our shuttle driver asked if three hours would be time enough and he would return for us. There was a large food court where we had lunch and then explored the stores on both levels of the mall. I bought two gifts that were easy to pack from the Gap Kids. The stores were decorated for Christmas and we sat and watched shoppers loaded down with packages. All malls are basically alike in Alabama as well as Pennsylvania. As the Christmas music played the thought of where I would be on Thursday kept flitting through my mind and I tried to concentrate on the sights and sounds in the mall. Our shuttle appeared on time and we returned to the Inn where the driver offered to take us to a grocery store. We bought coffee, frozen entrées and sandwich makings for my husband and daughter-in-law. I lost my appetite both before and after the surgery. I called Marcia Licata about 6:00 p.m. when we finally got to our suite. I realized by then that we would not be able to meet her so I left a message on her machine. I was sorry our connection could not be made. I called the Ambulatory Care Center to find out when I was scheduled for surgery and was told 10:15 to 10:30 AM but had to arrive at 8:30 AM for pre-op preparations. The rest of the evening was spent double checking my bag for the hospital, shampooing my hair and rolling it to give it some control. I realized what a great thing hair spray is when my hair was brushed and so full of static electricity it had a mind of its own and hair spray was not to be used. I could not believe that sleep would come this night, but it came rather quickly and I slept soundly all night.
Thursday, December 05, 2002 - "MVD-Day":
We awoke to a “winter wonderland”. Snow had not been predicted but 4 inches fell and slowed down things a bit in the rush hour traffic jams. Our shuttle driver knew all the by-roads and we arrived at the hospital on time. I was immediately taken to a room and “dressed” for surgery – gown, elastic stockings and slipper-socks. A nurse took my vitals and several people were in and out of the room asking questions and taking yet another long history of my HFS. A young man (I assumed another doctor) gave me a questionnaire to fill out that took 45 minutes – my diet, medical history, exercise history – almost everything you always wanted to know but didn’t ask! All of this took place while I was waiting to go down to the OR – needless to say my mind was a bit befuddled – and stressed out. The nurses kept asking me what the questionnaire was and who gave it to me. Later I did learn from Dr. Casey it was a graduate student doing research for a project. The nurses knew nothing about it. Finally, about 10:40 AM I was taken to the surgical holding area which seemed full. Dr. Martin came by and introduced himself as the anesthesiologist. A young man from Louisiana began putting IV’s in my hands – I’m not sure what they were for but it was almost painless. He asked me if I was from “the South” and I laughed and said, “How did you guess?” He said, “I’m from Louisiana and it is good to hear that ‘sound’”. When Dr. Jannetta and Dr. Casey came by and checked on me I told Dr. Jannetta that the young man was from Louisiana – he laughed and said “another one” obviously referring to his own days there. The holding room is a noisy, bustling place which I suppose is a good distraction from the OR ahead. I asked a passer-by what time it was since I had been in this room a long time and he said 12:35 PM. Not long afterward I was wheeled into the OR “saying” to myself all the while breathe deeply and stay calm and I did. The OR nurse introduced herself and went to work placing small discs on my upper body – monitors of various kinds. I assumed Dr. Martin was there and asked me to stretch out my left arm, which he attached firmly to a board. The last thing I remember was saying as I put out my arm “OK”. I became conscious in the Recovery Room; someone was asking me my name, what day of the week it was, where I was and thank goodness I passed the test and was asked these questions several times while in Recovery. Dr. Jannetta and Dr. Casey came in and told me to squeeze my eyes shut, smile and show my teeth, etc. and there were NO SPASMS. I had no pain then – perhaps all the drugs that I was unaware of taking. Later the pain that I had seemed to come from the incision and was not nearly as bad as I had imagined. I finally realized I had oxygen in my nose and IV tubes on either side of me in bed. My throat was sore from the breathing tube inserted during surgery. When I first woke up I did not have a tube down my throat or a catheter. I realized how weak I was when I asked for a bedpan and could not lift my head off the pillows or raise my hips on my own. The nurses brought the bedpan, one of the worst inventions ever made. When I “strained” to use it my left ear filled with fluid that ran down my neck. Immediately doctors came in and checked and determined it was spinal fluid. This frightened me because I remembered someone who had to have a spinal tap for the leaking fluid. Thereafter, my ear and nose were checked many times. A tiny hole was seen in my ear that later closed to my relief and there was no more leaking fluid. I asked for pain medication and the nurse put morphine in the drip and I immediately became nauseated and this was the most unpleasant part of my stay in the Recovery Room overnight since there were no rooms available. From the time I went to the OR my husband waited in the surgery waiting room. One glitch here was no one came out to inform him when the surgery was completed until 4:30 PM and he was concerned since I went to the OR at 10:40 AM. He was brought to the Recovery Room at 4:30 PM. My memory of the Recovery Room was wall to wall beds, very bright lights and constant noise.
Friday, December 06, 2002, The Day After:
My daughter-in-law, Charlene, had her flight into Pittsburgh cancelled on Thursday morning because the snow had shut down the Pittsburgh airport. She was able to get in on Friday morning and got to the hospital after I had been moved into a semi-private room. All I wanted was quiet and dark which is impossible when you are sharing a room. I was served lunch which I could not face – a turkey, dressing meal. I tried to eat the Jell-O but could not. They later moved me to a private room when one became available and it felt like heaven. I just could not eat when meals were served although I tried to force myself. I asked for a piece of dry toast and got it all down and later ate strawberry sorbet. Charlene insisted she spend the night and I was glad since I had not been able to walk to the bathroom with all my hookups. I had a headache and asked the nurse for medication and they were very obliging. It seemed that I slept most of the time even with all the IV’s and all the goo on my hair.
Saturday, December 07, 2002, Two Days Post-op:
Everything had a dream-like quality. The nurses checking my vital signs all night and an occasional pain above my incision. I knew today was the big test for my shower and shampoo. The idea was laughable, but it had to be done. A shower chair was placed in the tub and somehow I did a fair job of getting the glue-like mousse out of my hair. Needless to say, I felt human again though somewhat pooped! I walked around the room and felt stronger. When dinner came I tried a few bites but not much luck – bread seemed the one thing I could eat. Charlene spent another night hanging onto two chairs and a pillow.
Sunday, December 08, 2002, Three Days Post-op:
Three days ago I would not have believed I would feel so well. We called for the shuttle and returned to the Hawthorn Inn. I napped a lot the next two days and had no appetite at all but forced myself to eat a little. It was great to take a long shower again.
Tuesday, December 10, 2002 - Day Five Post-Op and Date of Departure for Home:
My appointment with Dr. Jannetta and Dr. Casey was at 10:00 AM. They asked me to squint and make all the faces and I was SPASM FREE. We talked and they said there were two areas of compression. Of course I later thought of questions I should have asked but I was spasm free and excited to be going home. After a hug and kiss from Dr. Jannetta we returned to our suite since our plane did not leave until 8:30 PM. Checkout time at our suite was 11:00 AM. but the manager told us to stay in the room as late as we liked and there was no charge. We arranged for the shuttle to take us to the airport at 6:00 PM. I did as advised and asked for a wheel chair since the concourse for U.S. Airways seemed a mile or two long. It took about 15 minutes to get through security checks and we continued to our concourse. We passed a McDonald’s and I had a sudden craving for a hamburger, which my husband went for after we found our gate. This was the best tasting junk food I had ever had! Our plane was a very small “commuter plane” but since the flight took only about 2 hours we made it in the cramped quarters. I asked the flight attendant to request a wheel chair at the Birmingham airport and it was waiting for me when we arrived. Since this airport is not nearly as large as Pittsburgh I could have walked the distance, but it was nice to quickly be taken to baggage claims. Our two sons were waiting for us and had brought our car, which they kept until we returned. Our drive home was a forty-minute drive from the airport and I felt great to think the surgery was behind me and I was going to sleep in my bed tonight.
Wednesday, December 11, 2002 - Day Six Post-Op - At Home:
Small towns have some advantages and one of them is the good friends who brought more food than we could possibly eat, fruit and meat trays, prepared catfish dinners and Christmas goodies that I had not cooked this December. I learned they got a daily report while we were in Pittsburgh via telephone and email. I told them I knew their prayers were around me as well as Dr. Jannetta since I felt so calm and at peace in his skilled hands.
Monday, December 18, 2002 - Day Eleven Post-Op:
I went to my PCP today and had my staples removed. Dr. Jannetta sent a pair of staple remover's home with me to give my doctor. The removal was totally painless. My doctor said Dr. Jannetta had called him after my surgery and explained what they had done. Earlier, I had copied the computer pages about HSF and the drawing of the surgical procedure for my doctor here – and he was very interested since this is not a common medical problem as we know. The only differences I feel, other than elation at being spasm free, is I tire easily and when I first returned home I napped frequently. I grow stronger everyday and the only pain medication I had was 4 Lortabs taken the two nights we spent in our Pittsburgh suite to assure that I slept before coming home. Aspirin takes care of minor aches. My left ear still feels “full” and my hearing is impaired but the doctors told me I should get 80% of my hearing back, which I can live with. I have resumed walking (not jogging) on a wooded trail nearby. The first walk was a slow mile.
Friday, January 31, 2003 - Eight Week Post-Op - UPDATE:
I’m sorry my diary has been so late in coming, but as soon as the holidays were over I began writing with many stops in between. I remain spasm-free and feel about 95% normal. Taking everyone’s advice, I stop and rest when I feel the need. Pain medication has not been necessary except for a sinus headache, which came with unusually cold weather. I’m walking briskly the two-mile trail now and feel stronger. I can never express my many thanks to the Hemifacial Spasm Association (HFSA) and Drs. Jannetta and Casey. You all are a wonderful support group!