MVD Diary - Maura J. Fulton
Tuesday, July 22, 2003 – Testing Day & Day before MVD:
Today was testing day. Prior to my first appointment, I pre-registered on the first floor of Presbyterian Hospital. They asked me some questions and gave me several labels that I would need for the day’s testing. At 8:00 a.m. I was scheduled for an EMG (electromyogram), but as the person who was to administer the test had not yet arrived, someone arranged for me to have the BSER (brain stem-evoked response) first (which was scheduled for 8:30 a.m.). This was a short and painless test that involved attaching electrodes to my head to obtain a base reading for the surgery. The EMG was a bit painful and uncomfortable. Small needles were placed in about 3-4 places in my forehead, cheek, and chin and measured the electrical impulses fired off by the 7th cranial nerve. This is the test that verifies that the irregular spasms are indeed Hemifacial Spasm. No question about that. The machine was going consistently crazy each time my face moved. I could hear very well the “static” sound that matched the spasms. The technicians also zapped electrical currents through the needles – this was a bit painful but not unbearable. I was most struck at the end of the test when the technician asked me how long I had HFS, and stated that he was asking for “personal, not professional” reasons. When I told him that it was more than 10 years, he expressed a bit of amazement and said something like “anyone who deals with this disorder for that long has to be a strong person to begin with and has to have developed an amazing amount of strength to live with it. I can’t imagine. And the people who have supported you and stuck by you and helped you through this…well, keep those people around you. Don’t lose them; they’re special.” This was one of the best things he could have said, for it served to validate the disorder I have endured for so long, emphasize the strength and tenacity that has allowed me to endure, and reminded me that I did not arrive at this point on my own – I’ve had so much encouragement from family, friends, and the members of HFSA. At 10:30 a.m. I went to the Department of Neurological Surgery for a history and physical. A resident asked me a series of questions and did a few tests and did his best to answer some of my questions, but he mostly deferred to Dr. Kassam. When Dr. Kassam entered the room, I became somewhat overwhelmed that this was becoming such a reality and did my best to suppress the urge to cry! He described briefly the procedure, reviewed possible risks, including percentages related to complications, and talked about the general success rate of the MVDs. He spoke about the intraoperative monitoring of hearing and the stress that is placed on the 8th cranial nerve during the operation. Dr. Kassam said that if he were to reach a ‘danger zone’ in which hearing loss was probable, they would stop the operation and try again in three days. He surprised me a bit by stating that I would look different even with 100% recovery. The affected eye has been so stressed for so long that it was going to go into a state of shock after the constant pressure was relieved! The eye might be wider than the non-affected side and my face may be somewhat asymmetrical. I had done so much research already that, of course, I couldn’t think of too many questions to ask. I just felt ready. Dr. Kassam is young, bright, sharp, very down to earth and open, and those few minutes with him assured me that I had made the right decision. I knew that I would be in terrific hands. During my meeting with him, the Nurse Coordinator, Lois Burkhart, came in and introduced herself. I was so delighted to have finally met her, as she had been SO incredibly supportive and helpful over the past few months with all of my email inquiries and questions and concerns. To have finally met her was terrific. And she hugged me at least three times, which I really needed. I had a hearing test at the Eye and Ear Institute at 12:30 p.m. Nothing strange or startling there. I was informed that I would return for a follow-up test after I get my sutures removed next week. Finally, at 1:30 p.m., I went to Montefiore Hospital for pre-admission testing. This included an interview and medical history, blood tests, urine sample, meeting with an anesthesiologist, chest x-ray, and EKG (electrocardiogram). The staff did a great job moving me swiftly through the tests. The anesthesiologist spent time explaining the process of administering the anesthesia, what I could expect in the recovery room, and the effects that the anesthesia would have on my recovery. I finished by about 3:00 p.m. The whole testing day went smashingly well and I really was so impressed by the UPMC staff. They were friendly, accommodating, and took the time to explain the various tests and their purposes. I ended the day feeling prepared and encouraged. In the evening I packed my bags at the hotel, emailed a few friends, watched TV a bit, and readied myself mentally for the journey. I was instructed to be at the hospital at 6:00 a.m. for the surgery and not to eat or drink anything or to take any aspirin or other medications after 12:00 midnight.
Wednesday, July 23, 2003 - "MVD-Day":
My brother picked me up at the hotel at 5:30 a.m. I checked out and he packed my bags for him to take to his house. We went to the 6th floor registration area at Presbyterian Hospital - I signed in just before 6:00 a.m., was asked a few questions, and was given a hospital bracelet. I was called to change into my hospital gown and was placed in sort of a “holding area” on a bed. A nurse asked me a few questions and gave me a couple more identification bracelets. My brother then came in and stayed with me until I was wheeled to the pre-op waiting area. We said goodbye at the family’s waiting room, my brother giving me a quick kiss and a reminder to “be strong.” I was wheeled into the pre-op area by about 6:40 a.m. Eventually, I met with the anesthesiologist, along with an anesthesiology nurse and student. They again described the process and prepped me with the IV lines in both arms. I also spoke with an MD and one of his students about my HFS. I felt like a specimen being observed, but appreciated that I could be a part of UPMC’s teaching tradition. The med student was going to be observing my surgery, so I think it was good for her to meet me. At 8:00 a.m. they started the anesthesia and I honestly do not even remember being wheeled out of the room; it took effect that fast. I do remember waking up in the recovery room, after about 1:00 p.m. or so. I was very groggy and a bit loopy from the drugs, but I remember feeling remarkably well and spent the next few hours chatting with the nurse as I drifted in and out of sleep. Dr. Kassam came in at one point looking fairly exhausted. He had been called away on an emergency and had several surgeries (5 or 6?), so I think it was a pretty hectic day for him. I recall him saying that he found “a mess” when he operated on me; apparently the offending vessel was looped around and embedded in and among the 7th and 8th cranial nerves. He said that if he tugged on the vessel one way, he pulled the 7th nerve and the other way pulled the 8th nerve. My nerve, he said, was thin and attenuated as well, making the procedure a bit tricky. I did notice, as soon as I was awake enough, that I was SPASM FREE! I had double vision, which lasted most of the day, but I was not at all nauseous. I was extremely parched. The nurse gave me ice chips, then water, then I even requested a diet ginger ale. All was well until I took too big of a gulp and made myself nauseous. I remember reading in someone’s MVD diary that her test of the spasms being gone was the ability to whistle. So in the recovery room, as quietly as I could, I puckered to whistle. I was elated to fine that I could again whistle without my right eye closing. After 4:00 p.m., I was taken to a room on the 8th floor where I would be closely monitored. I passed the family waiting room and was happy to see my brother, who followed me to my room. My brother was amazed that I was in such high spirits and was indeed now without the spasms. I spent the rest of the evening being monitored and put through various tests by the wonderful nurses. I had an IV in, an automatic blood pressure cuff on my right arm, and cuffs on my legs to prevent swelling. I was pretty nauseous and ended up spitting up the ginger ale that I had been so proud to get down. I could not stomach any food. I felt great, my hearing seemed to be in tact, my taste also seemed unaffected, and aside from the headache and obvious pain and discomfort from the incision, I felt as if I had come through the surgery with flying colors. I just vowed to focus on doing whatever I needed to do to get strong and heal. I took Percocet for the pain twice. I think that Dr. Kassam came in again at some point, but I can’t remember when. I know that he again stated that he found a mess when he operated on me, but seemed to be very happy with the results.
Thursday, July 24, 2003, The Day After, in the hospital:
I was having an interrupted, uncomfortable sleep, due to the constant checks by the nurses and the headaches/pain in my incision area. Finally, at 2:00 a.m., I decided to look in the mirror for the first time. I reached for my tray and pulled out the mirror underneath to gaze finally at my wonderfully calm face! This was my visual confirmation that I was truly now a member of the Spasm Free Club. The morning was spent in bed under the close care of the nurses. I had ice chips and ginger ale and a bit of Jell-o and concentrated on moving my neck to prevent stiffness and doing leg exercises. I watched a bit of TV in between naps. In the morning I asked the nurses if I could have my catheter removed, as I felt ready to try to get out of bed. I was able to give myself a sponge bath and then sit in a chair for a bit. At some point in late morning, I was moved to a private room on the 5th floor. I was able to spend part of the day sitting up in the chair. Reading was a bit difficult, so again I watched some TV in between naps. The visits from the resident doctors were quick but all seemed to be well; my hearing seemed to be fine and my dressings were removed. I tried to manage the pain, but ended up again taking two Percocet during the day. I was delightfully surprised by a visit from my sister and two nieces from W. Virginia. It was the best therapy and they spent several hours with me. My nieces got me up for my first slow walk in the hallways. I felt pretty weak and dizzy, but very happy to be moving. My brother and his girlfriend came at lunchtime and brought me a Starbuck’s coffee, which I had no problem finishing. I even ate a bit of the hospital lunch. My brother also brought me a quesadilla from a Mexican restaurant for dinner, which I was able to eat part of. I was surprised at how well I was feeling and am very grateful that I have not been nauseous.
Friday, July 24, 2003, 2 Days Post-op, discharge from the hospital:
The pain today was mostly manageable, but it was still took great effort to slowly turn and lift my head. I had headaches and pain in the incision area, but tried to exercise my neck and legs to prevent stiffness. I bathed myself, took several walks in the hallways, sat up in a chair, tried to do some reading, watched some TV, and managed to speak on the phone with a few family members and friends. I also allowed myself to drift off and take naps as often as I needed. My sister and nieces came to visit before returning home. I asked my sister to take a photo of my incision with her digital camera so that I could see it and when she showed it to me, I lost it and began sobbing. I’m not sure why-maybe because seeing the incision was a bit scary or because that visual made it all so real and made me realize just how far I had gone to get to this point. Actually, the incision was not as long or as frightening as I had expected. It was closed with sutures rather than staples, making it seem somehow less severe. I was visited several times by resident doctors. One of them told me that I could be discharged, but I was feeling a bit weak so she gave me time to think about it. In the meantime, my nurse removed my IV and cuffs and checked on my incision area. All was well, so I arranged with the resident to be discharged after 5:00 p.m. when my brother could pick me up. All in all, I feel as though my recovery is right on track. I am spasm-free, my hearing seems fine - aside from the expected (but slight) feeling of “fullness” – and I am up and able to walk. My nurse told me that I may have won the prize for coming the farthest to have an MVD at UPMC (from Thailand). She went through my discharge instructions and gave me four prescriptions for Percocet, Flexeril, Colace, and Zofran (be warned…I found that the Percocet makes you very constipated and the Colace does not really help much. I did not pay enough attention to the fact that Zofran was for nausea. It is VERY expensive and I never took it, so make sure you only fill prescriptions for those meds that you will need). My brother and his girlfriend picked me up from the hospital and took me back to the hotel. They walked with me to a drug store to get the prescriptions, water, and other items. I felt okay, so we went to a nearby deli for dinner. I held it together, but it was challenging to sit there. Sounds were a bit strange; some louder some distant; I can’t describe it. Back at the hotel, I settled in and went right to bed.
July 26 - 29, 2003, 3-6 Days Post-op:
Over the past few days, I have followed a similar routine. I have not been sleeping very well, as the headaches have been constant, my dreams have been intense, and I am continuously rearranging my pillows to find the most comfortable position for my incision area. I knew that I wanted to be sure to exercise as much as possible and get back to a “normal” routine, so I tried to get up early and shower and dress. I was allowed to first shower on day 4 post-op, and it felt fabulous! I start each day with a walk, usually around the block or to Starbuck’s for a cappuccino, as that is about all I can handle. I am dizzy and a bit unsteady, but feel fairly confident getting out on my own. I have a fear of people coming close to me and accidentally getting near my incision, so I am careful to steer wide paths around everyone! I then go back to the hotel for a nap and have been taking Percocet because my head is very sore and has been hurting. The Percocet allows me to rest and ensures that I spend at least a couple of hours a day getting some necessary sleep. Most of the rest of the day is spent watching bad American afternoon TV or emailing or reading. I can’t spend too much time on the computer or reading a book before tiring. My brother has been visiting me after work and is taking terrific care of me. I’ve had no problem with my appetite but am very constipated from the drugs – it’s pretty uncomfortable! On day 4, two hometown friends came to visit for the afternoon and I did manage to get out with them to go to an Indian restaurant. I was a bit dizzy and had weird sound effects in my ear on the HFS side, but managed to handle it fairly well. I really just felt unsteady and loopy and was fairly knocked out when we returned to the hotel, but it was terrific for my spirits to have them celebrate in my success with me. They were pretty amazed at the immediate results of the surgery.
Wednesday, July 30, 2003 - 7 Days Post-Op, follow-up and suture removal:
Went back in to UPMC for an 8:30 a.m. appointment to have my sutures removed. I still feel a bit woozy when I walk and have learned to just take it slowly and make sure that I am near a railing or a wall! I was lucky that Dr. Kassam happened to be in the office, so he did the suture removal. He was pleased with the results and the progress that I am making and I felt so grateful to him for his remarkable gift and magic hands. Lois Burkhart is the greatest cheerleader and I once again appreciated her enthusiasm and support and delight for my successful surgery and recovery. She is so kind and gives you her full attention – what a gem. Dr. Kassam scheduled me for another follow-up on August 26, 2003 to ensure that all is well and that I can be medically cleared to return to my work in Thailand. I will spend most of my recovery time with friends and family and return to Pittsburgh at the end of August. I went back to the Eye and Ear Institute for a follow-up hearing test. Although my hearing seems to be fine, I was told that it had indeed diminished a bit but was still in the normal range. I will return for another test on August 26 if I feel that it is warranted. After the appointment, I took a short walk and went to a restaurant for lunch. I could only sit for about a half-hour, as the morning took a lot of energy out of me. I went back to the hotel to nap and rest.
July 31 - August 1, 2003 - 8 & 9 Days Post-Op:
I spend one more day of leisure at the hotel, resting, napping, taking short walks, and watching TV. I am feeling great and went for my first venture away from the hotel and hospital area with my brother and his girlfriend to a restaurant. Driving in the car was fine and dinner was also great – though the noise and the dark lighting bothered me a bit. On day 9, I left Pittsburgh with my brother, who drove me to my parents’ house in south central PA. I took a Percocet for the ride and did fairly well the whole way. It was good to see my folks and also see their surprise and delight that the surgery ‘cured’ me of HFS.
August 06, 2003 - 2 Weeks Post-Op:
I am feeling well and my hearing and appetite seem normal, though am still very concerned about developing Bell’s Palsy. I am trying to learn all I can and not dwell on it or jinx myself and am heeding the warning of friends and family to just focus on what I need to do to rest and heal. I have had no spasms; only an occasional flutter but nothing that has me concerned For the first couple of days at my folks, I took it very slowly, rested and napped, and took Percocet for the first two days to help ease the headaches and allow me to sleep. I have been taking walks around the neighborhood but they wear me out pretty quickly. I can handle being out for up to an hour before I need to go back home and get horizontal. My hair is starting to grow back in and my incision area is healing well, though I am still very much conscious of the tightness and numbness that I feel. At the end of the 2nd week, I felt well enough to go out for the first time to meet friends for lunch. I also stopped taking Percocet.
August 13, 2003 - 3 Weeks Post-Op:
I am spending the week with my parents visiting my sisters and their families. I took my first road trip (about 150 miles) and drove the whole distance with no problems. Being with my nieces and nephews has been wonderful but tiring, as they require a lot of energy and attention, so I have been listening to my body and taking naps when necessary. I have taken Motrin or Advil a few times for my headaches, but they have been manageable. I am conscious of the incision area, especially when turning my head, as it is still a bit tight and numb. I am trying not to lift heavy weights, but am feeling stronger and stronger. In a very strange twist of fate, my oldest sister developed Bell’s Palsy a few days ago. I had been SO worried about this and was really hoping every day (especially from days 9-15 when they say that it hits) that it would not affect me. And then she got it. She has a classic case where her eye does not shut and the side of her face has dropped and she is perplexed and frustrated…especially as she is an elementary teacher and returns to school soon. I have no idea if my fears were transferred to her or why, of all things, this would affect her at this point in time. I have done enough research that I am able to talk to her about the condition and the treatment and recovery, but the most I can do is be supportive and encouraging and give her as much love and white light as she has given me.
August 20, 2003 - 4 Weeks Post-Op:
I feel pretty fabulous and am still totally spasm-free (and have been knocking wood accordingly). I drove to Washington, DC for a few days to check in with the State Department about my medevac status, meet with folks at the Peace Corps headquarters, and reconnect with friends from grad school and the various places I have lived around the world. I had no problems driving or getting around and I have had no headaches for about a week. My incision area is healing well, though it is a bit sore at times, and my hair is starting to grow back. I even got a haircut this week and the scar is still completely hidden. I still get a bit tired now and then, but for the most part, I feel super! I allow myself to rest or nap when necessary and have been trying to walk as much as I can for exercise. When I tell people the whole story about my HFS history and the MVD, they really can’t believe that I have had brain surgery and am getting around the way that I am. I have really benefited from having this healing time and being able to reconnect in meaningful ways with family and friends. My focus and perspective on…life…has really shifted. I am conscious of The Process and am doing all I can to be mindful of where I have been, the effects HFS has had on my life, work, relationships, and outlook, and how I want and need to move forward. I am so much more OPEN and positive and energetic and optimistic and I thank God/Buddha/Allah every day for giving me strength and courage. And I am so grateful for the clarity that this whole experience has brought me. Yeah.
August 26, 2003 - 5 Weeks Post-Op, follow-up appointment & exodus from the United States:
Whoo-hoo! I had my final follow-up appointment this morning with Dr. Kassam and all went well. Dr. Kassam was pleased with my progress and the beauty of his handiwork (my incision) and Lois was wonderfully enthusiastic and encouraging as well. Her hugs make it all worthwhile. I am spasm-free and I feel really strong and raring to go. This has been an amazing journey and I already feel the impact that this has had on so many aspects of my life. I am more positive, more open, more optimistic, and filled with love and courage. Lois submitted a report to the State Dept. and they cleared me to return to my post in Bangkok. So…I will depart on a flight from Pittsburgh on August 27, 2003. "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved." -Helen Keller
January 23, 2003 - 6 months post-op and feeling groovy
It has now been 6 months since my MVD surgery at UPMC and I am happy to report that I am still totally SPASM FREE. I have had absolutely no side effects, complications, or problems as a result of the surgery; my incision has healed beautifully; my hair has grown back; and I am reaping the amazing rewards and benefits of a life without HFS. I am so grateful every day that I was led to the HFSA and to Dr. Kassam and I am so glad that I had the strength and courage to go forward with the surgery. It has had the most profound and amazing effect on all aspects of my life. I am more than happy to answer questions from any members contemplating the surgery. Love and light!