MVD Diary - Stacy Caldwell (Denlinger)
Monday, November 15, Date of Departure:
I have an early breakfast out with my parents and grandmother. These days I am consciously paying close attention to the spasms, and when they come I try to remember, "Only a few more days of this!" Eating breakfast and sipping hot coffee this morning, they are going crazy. My mother and I leave Lancaster, PA around 9:30 AM and hit the PA Turnpike headed for Pittsburgh. This is quite an adventure for both of us - - two country gals out for a week and a half in the big city! We arrive in Pittsburgh at around 2:30 PM and find Shadyside Inn with no trouble. Arriving in Pittsburgh, the thought occurs to me: This is it! I've been working towards this surgery for the last 9 months, and finally here we are! And I am even more nervous! My mother and I are renting a two-bedroom suite with a kitchen, dining room, living room, TV/VCR, and even a nice balcony. It is on the same street as the hospital (5th Avenue) and only about a mile and a half away. We could've opted for a more economical stay at one of the Family Houses, but I decided that I'm only going to do this once, and for many reasons felt the expense would be worth the added space and comfort and privacy during our stay here. We arrive too early for check-in and decide to do a little exploring. We head down 5th Avenue to make sure we can find the hospital, and our way back, with no trouble. I am also keeping my eye out for a bookstore, Jay's Bookstall, which I have heard from the Circle of Friends Internetsupport group, always has a supply of the book, "Working in a Very Small Place, the Making of a Neurosurgeon." The book details Dr. Jannetta's work in developing the microvascular decompression procedure. We find the bookstore right across from the hospital, manage to park on the street, and purchase a copy of the book. After checking into our suite, we unload the car and begin moving in. This is no small task since we have to unload groceries along with our other belongings, books, pillows, etc . . . into our second story apartment. Once we are finally in, Mom can't help but wonder how we are going to get out of this place with me not being able to lift more than a few pounds at a time! We spend a nice quiet evening reading (Mom knitting), and head to bed early. Today was a long day of travelling, and tomorrow will be a long day of tests at the hospital.
Tuesday, November 16, Pre-surgery Testing:
Dr. Kassam's office has previously overnighted a schedule for today's tests along with a packet full of information about the hospital, the Pittsburgh area, and the surgery. We are to first report to his office at 7:30 AM. Mom and I decide to take a taxi to the hospital, rather than deal with parking, and arrange for one to pick us up at 6:45 AM (we don't want to be late!) We arrive early enough to stop at the registration/admissions desk to sign in. The worst part about this registration interview is when they ask you if you have a living will, and if you prefer any type of religion, and who is with you that can make critical decisions if you are not able! I have been to Dr. Kassam's office once before for a consultation back in June. This morning the office is not nearly as busy as during my first visit, and there is one other couple waiting. We strike up a conversation and the lady says she noticed that my face does the same thing as her husband's. It turns out they have driven all the way from Kansas and he is scheduled to have surgery for hemifacial spasm tomorrow just like me! They are very nice, and we are not waiting long before the nurse calls me back to an examination room. There I meet with a Nurse Practitioner who asks me a lot of questions and does a brief physical examination - - the typical walk across the room, smile real big, squeeze your eyes shut tight, stick out your tongue, pin pricks all over the face - - this short exam will be performed by nurses and resident doctors every day, several times a day, after the surgery. My mother is called back, and a little while later we meet with Dr. Kassam and Dr. Horowitz. For some reason when Dr. Kassam comes in to greet us, my spasms begin going particularly crazy, and once they start like that, it takes a few minutes for them to calm down. Dr. Kassam mentions that the spasms seem much worse than the last time he saw me and wonders if it is because I am nervous. Well, yes, I am nervous, and yes that usually makes the spasms worse (and how does he remember the last time - - that was back in June!) Anyone who has had hemifacial spasm knows how unpredictable the spasms can be. Sometimes they seem related to stress, nervousness, or fatigue. Other times they seem totally unrelated to any outward circumstances. Sometimes just making eye contact with a stranger in the grocery store will seem to trigger a fit of spasms. Other times, during the most stressful of situations, like a job interview, they will seem amazingly calm. Definite triggers are different uses of the facial muscles: eating, smiling, talking, singing, etc . . . But often they will happen with nothing at all to trigger them, such as while simply watching TV, reading, lying down to go to sleep, or even while sleeping. After a few minutes the spasms calm down, and Dr. Kassam explains the procedure to me again, much like he had in June during my consultation with him. A few points of interest about this conversation: · One thing I appreciate most about Dr. Kassam is that he doesn't sugarcoat anything. He gives you the worst-case scenarios right up front. Dr. Kassam tells me he is concerned that my spasms have become so severe over such a relatively short period of time, 2˝ years. He is afraid this may be an indication of a particularly "heavy" compression and therefore possible damage to the 7th nerve, resulting in permanent facial weakness after the nerve is decompressed. · He makes sure he understands how I feel about the possibility of losing my hearing in my right (spasm side) ear. Since the facial and auditory nerves (7th and 8th CN, respectively) exit the brain stem in a bundle, there is very often a high degree of risk that the auditory nerve will have to be manipulated. Since that nerve is extremely sensitive, there is a great degree of risk of partially or completely losing hearing in one ear. Dr. Kassam wants to know before the surgery what he should do in the instance he must risk my hearing to try to correct the spasms. I have considered this a great deal before now, and I tell him that I am willing to sacrifice my hearing in my right ear to correct the spasms. · Dr. Kassam explains that a significant improvement in the success of the procedure over the last year has been the addition of the endoscope to the surgical microscope as a means of locating the compression. Now they can view the compression from two angles at the same time while they work to correct the problem, and that is partly why both Dr. Kassam and Dr. Horowitz will often work together during a surgery. I am wondering how they can possibly fit two microscopes along with the surgical instruments through an opening in the bone that is only about the size of a quarter! · Pulling a small amount of cotton off of a swab, and rolling it between his thumb and forefinger, Dr. Kassam forms a tiny "pad" that is hardly more than a millimeter wide and about two or three millimeters long. This is considered a "fairly large pad." He explains that this is what they will use to protect the nerve from the offending blood vessel, only it will be made of Teflon instead of cotton. · Dr. Kassam also explains another significant development. They are now finding that most compressions occur within an area which they have unofficially named the "Triangle" which is actually a triangular area around the 7th nerve as it exits the brain stem. He explained what forms the border of this triangle, but I cannot remember the specifics of which cranial nerves or major arteries he mentioned. Many surgeons for some reason avoid this area, and decompressions will often times be unsuccessful if that area has been ignored. Dr. Kassam says when he has "re-done" surgeries by other surgeons, he has often found a compression that was neglected in the "Triangle" area. So now, unless there are indications otherwise, this is the area in which he will most likely begin looking for a compression and very often will find one. Also, when blood vessels in this area are moved off the nerve, the decompression is most often successful. · Dr. Kassam can tell I am very nervous about having surgery tomorrow. I explain that I have never had any kind of surgery before, much less brain surgery. But I assured him that I know I have to do this - - no, I know I will do this - - eventually, and better sooner than later. My next appointment is at 9:00 AM for the EMG (Electromyogram). For some reason, finding our way around this huge complex of hospitals is really not too difficult. We wait out in the hall until at least 9:30 because the neurologist, Dr. Soso, who conducts this test, is nowhere to be found by his technician. Finally, after many apologies from the tech, Dr. Soso arrives and we go into a tiny room, which is filled mostly by a huge machine and a big, leather recliner. The EMG machine looks like something out of the early Star Trek shows with all of its gadgets, gauges, dials and switches. Anyone who has ever met Dr. Soso would probably know what I mean when I say that he is somewhat eccentric! But I found the EMG and the things Dr. Soso talked about fascinating, and Dr. Soso himself very entertaining. He has been at UPMC for about 20 years now, which means he has seen a lot of Dr. Jannetta's work and his patients over the years. He asks me a lot of the normal questions everyone asks: When did the spasms begin? Where on your face did they start? What treatments have you tried? He also asks some curious questions. For instance, he asks if I hear anything when I have spasms, and I tell him about the butterflies fluttering their wings in my ear during a spasm. He asks if I feel my hearing is affected during the spasms, and I say yes, I definitely have more trouble hearing during a spasm. Everyone else I had talked with about this had seemed to dismiss it as no big deal, so I ask if he can tell anything about my particular compression by what I experience in my ear. At this question, he just sits back with a big grin and gives the Groucho Marx eyebrows, as if he is about to disclose some important "inside information." He explains that this helps give him an idea of where on the nerve the compression is located. I also find it interesting when he explains with his cartoon drawings that the cranial nerves, as they exit the brain stem, have a different cell structure as their outer protection than the structure of the myelin further along the nerve. At the transition point between these two cell structures, the nerve is very vulnerable, and this is often where a compression by a blood vessel will affect the performance of the nerve. For the actual test, Dr. Soso directs me to lie comfortably in the large recliner. He places two large pins in the HFS side of my face: one in my upper cheek area, and one in my chin. The pins need to penetrate the muscle just under the skin, but they usually aren't supposed to hurt too badly. The one in my cheek does not hurt at all, and Dr. Soso tapes it securely to my face. The one he places in my chin is a killer, and I tell him so. He asks if I can put up with it for about 8 minutes and I say no, so he tries again. This time he finds an area of the muscle that is not quite as sensitive and I feel much better. Now that the pins are in place, I can actually hear even the very slightest move I make with my facial muscles. Even blinking my eyes creates a quick burst of static from the machine. Now, as a result of all the work around my face placing the pins, I am having some pretty fantastic spasms that won't let up. This is actually good for Dr. Soso, because now he is measuring the spasms for "synchronicity" between the cheek and the chin. One sure sign of a compressed 7th nerve is that the different muscles of the face are completely and exactly in synch with one another during spasms. As I am having spasms, the electric static sounds coming from the machine are pretty loud. We have to wait for them to calm down before Dr. Soso can continue. After my spasms finally let up, Dr. Soso begins working quickly, moving around the machine, flipping switches, calling out strange numbers and codes to his technician who is sitting next to me furiously taking notes. Dr. Soso dabs different areas of my face with a cold, wet cotton ball and then sends a small jolt of electricity into my face with a small electrode. It feels strange and is slightly uncomfortable, but it does not really hurt. Dr. Soso is actually following the current of electricity as it travels along the branches of my facial nerve. He explains later that the current he sent to the chin area should have stayed in the chin area if there was no compression of the facial nerve. Electric currents normally travel only between the nerve branch in the muscle and the brain stem. They do not travel from nerve branch to nerve branch, or in other words, from the chin to the cheek or vice versa. But, he explains the EMG shows that the currents in my face are actually being re-routed somewhere along the facial nerve, so that when he sent a signal into my chin, it showed up a few split seconds later in my cheek. Or when he sent a current to my forehead, it also appeared in my cheek and in my chin. Dr. Soso tells me that he sees no signs of damage to the 7th nerve from this test. He says there's nothing here that a little Teflon can't fix. This is good news, and although I have no idea how he could determine that, I hope he is right, and hopefully Dr. Kassam's fear of possible permanent facial weakness will prove unfounded! Dr. Soso is also very encouraging when he says that after everything he's witnessed over the years, if he had one of these cranial nerve disorders, he'd be getting in line right away to have this surgery. Next we are scheduled for the BSER (Brain Stem Evoked Response) at 10 AM and we are already behind schedule. Thankfully it is right across the hall, so we won't have to walk far this time. I do not understand much about this test other than I believe it graphs your hearing and how much time it takes for a sound to travel from your ear until it is detected by your brain, a term called "latency". Everyone's graph is unique, and the graph they will generate today is one that shows my normal "latency." During the surgery tomorrow, a technician or doctor will be continually monitoring my BSER and will use today's graph as a sort of "baseline". This will let Dr. Kassam and Dr. Horowitz know if my hearing is affected by what they are doing at any given moment while they are working. For this test, the technician is training some young college students how to place the electrodes and work the machine. I feel a bit like a mannequin as they talk around me, smearing a gooey cream and taping electrodes onto my earlobes and forehead, measuring my head and drawing marks on it to find the top center of my cranium. After I am all hooked up, they instruct me to lie down as they try to affix headphones over my ears without tangling all the wires that are attached to me now. The students are a little clumsy about this, and I am just chuckling to myself about all the fuss. They turn out the lights, and I just lay there for a few minutes. I hear some tones in the earphones, the students are whispering to each other, and before I know it, the test is done. The students begin unwrapping me from the wires and cleaning off the goo, and I am on my way. During these tests, my mother has met up with the other couple scheduled for surgery tomorrow. They are waiting in the hallway outside, and they have some very disappointing news. They tell us the doctors are not comfortable performing the surgery for him since he has a spider bite on his leg that appears infected. Now they will have to turn around and go home - - all the way back to Kansas! I am so sorry for them, and can't imagine how hard that would be to have to turn around and go home after all the preparation and anxiety. Now they are getting the tests out of the way while they are here. They will have to come back in January for the surgery. Mom and I have a little time before the next appointment, so we head up to the cafeteria on the top (11th) floor for lunch. The next test scheduled for 12:00 PM is the Audio Testing at the Eye and Ear Institute next door. UPMC is made up of what used to be about five separate hospitals which later came together to form the whole network of the University of Pittsburgh Medical Center. Finding the Eye and Ear Institute is a little trickier. We have to make our way across a pedestrian bridge that connects the buildings. The audio tests prove to be quick and easy. I am taken to a very small soundproof room. These tests are very reminiscent of the ones we had in elementary school, only a little more advanced. Besides just hearing tones through headphones and raising the respective hand to indicate I've heard it, the doctor also has me repeat words I hear in the headphones. Then he creates an airtight seal in my ears with plugs (this hurts a little when he presses the plugs in) and does a few more tests. These tests will be repeated a week after the surgery to ensure my hearing has not been damaged at all. The last tests of the day are the Pre-Admission Tests at the Montefiore Hospital, which is another slight trek and a little harder to find. These are scheduled for 1:00 PM. First I have some X-rays taken of my chest and my skull, and then I have an EKG of my heart. Next, some blood samples are taken in case they would need to give me blood during surgery. Everyone assures me this is an extremely rare occurrence, and the samples are mainly just a precaution. They put a special pink band on my wrist and tell me I must not remove it before surgery or they will have to take blood again. The band identifies me with blood that will be prepared especially for me in the case of an emergency during surgery tomorrow. Before we head back to our suite, we meet with a nurse anesthetist, who asks me a long list of questions about my medical history and explains how the anesthesia will work. I have some questions about the tube they will be putting in my throat for the respirator. She ensures me that all of this will be taken care of after I'm asleep and before I wake up. She also mentions that besides the intravenous lines that will be inserted before I am asleep, they will also be using an arterial line that is quite painful and is therefore inserted and removed while I am asleep. She also explains that they use a BIS monitor during surgery so they are able to know just how deeply asleep I am at all times, and to ensure that I won't be waking up before I'm supposed to. While we are talking with her, she calls our OR nurse so that I can get some further instructions from her. She tells me over the phone to arrive tomorrow morning at 6:30 AM. My surgery is scheduled for 10:00 AM. She tells me not to eat anything after midnight, and to wash in the morning with the special shampoo I was given earlier at the doctor's office. And that was it! Let me just say here that everyone has been so friendly and professional during the entire day. Everyone has kindly wished me a successful surgery. By the time my mother and I call a taxi and head for "home", it is about 3:30 in the afternoon. We are tired and anxious - - only a few short hours now! I have trouble eating supper or concentrating on any reading, so we head to bed pretty early. That night I remember dreaming that I'm back home in Lancaster the morning of the surgery, and I'm desperately trying to figure out how I'm going to get my boys to school and get back out to Pittsburgh in time for my surgery!
Wednesday, November 17, "MVD-Day":
This morning we are up at 5:00 AM. Mom and I have decided to use the valet parking at the hospital today since it is free on admission day, and the cabs ended up costing more than we thought (a little over $7.00 one way after the tip). I have packed just a few things (toothbrush, glasse case, etc . . .) and a separate overnight bag for Mom to bring in later. I am wearing just sweats and my slippers. We get to the hospital around 6:00 and pull up to the valet parking area with no trouble. We are to report first to registration and admissions at Montefiore, although the MVD will take place across the bridge at Presbyterian. After we register, we are directed to go to the 7th Floor of Montefiore, which is a pre-surgery floor where people are just sitting around waiting to be called for surgery. By this time it is only about 6:30 AM. A nurse comes in, gives me a gown, scrub pants, and socks. She takes my blood pressure (which is sky high at this point!) and checks my temp and pulse. She asks me the same long list of medical history questions, and says someone will come get us when they are ready for me in the OR. After that we are left alone to sit and wait . . . and wait . . . and wait. Mom finds some coffee down the hall, and we sit and chat and watch the sun come up. We discover the TV at about 8:00 AM and turn that on for a distraction - - the Today Show. We take some walks around the floor, and at one point as we are walking past the nurse's station, I overhear one nurse on the phone talking about Stacy Denlingerand whether she's ready. I chime in; "I'm ready!" They laughed and said the OR was ready and that someone would be up soon. Well, after a few minutes, someone comes back to our room and informs us they were mistaken. So we end up waiting again, and by now, besides suffering from anxiety and high blood pressure, I am starving! Around 9:30 (3 hours after we arrived at this room) someone stops by to tell us it's time to go, and it's the real thing this time! I climb onto the hospital bed, and my mother and the nurse pile my bags of clothes I was wearing, my coat, etc . . . on the bed at my feet. An escort wheels my bed out the door and towards the elevator with my mother following beside me. I am so nervous now I can hardly stand it! I am handed over at several differentpoints to a new hospital escort. We head over the bridge to Presbyterian, and I feel so conspicuous. I've never seen hospital corridors from this angle before. One more trip on another elevator, down a short hallway, and suddenly the current escort says, "Well, here's where you say good-bye!" Oh dear, this is it! A quick hug and a kiss for Mom as she tries to manage all our belongings off the bed and down the hall to the waiting room where she will spend the rest of the day. The escort wheels me to the OR area into a large room that looks like some sort of patient prep area. I am about the only other patient there, and I imagine the OR must not be very busy today. The anesthesia nurses are very friendly as they are starting an IV in each hand. The anesthesiologist stops by and chats with me a little. He is very friendly also. I'm wondering about how many people are usually in the OR during the surgery, and they tell me that with the nurses, techs, and doctors, there are about 10 people on the team. A few minutes later Dr. Kassam arrives and asks how I'm doing. I'm fine, of course, and how did it go earlier, removing that tumor? That went smoothly. Dr. Horowitz is expected to arrive in a few minutes. A little more small talk, and then Dr. Kassam asks if I'm ready. I answer that I'm tired of the anxiety and ready to be on the other side of this surgery. Just get me to the "other side!" They wheel me out of this room, down another short hall into one of the blue rooms that line the hallway. I remember feeling very alert, but I must have been a little groggy at this point because I don't remember too many details of the operating room although I do remember the room being much smaller than I expected. I remember someone asking me what is my name, where am I, where do I live, what's my name, do I know where I am . . . and then my memory goes blank for a few seconds, and the next thing I know I'm waking up! From this point on I'm going to have switch to writing in the past tense. I can only report what I can remember. The days in the hospitalfollowing the surgery are somewhat foggy and the days all seem to have blended together and gone by quickly. I vaguely remember waking up in the recovery room. I am told it took me about 2 hours after the surgery to finally wake up. There was a mask on my face, and I remember feeling like I was not able to catch my breath. I was unable to talk, and all I could do was make moaning noises to try to get someone's attention. Everyone around me seemed very busy, but every now and then someone would come over to tell me I'm all right and to just try to relax and breathe. The lights were bright, yet at the same time it seemed dark. It was around 4:30 when I was taken to a room in the Constant Care Unit. I only remember saying good-bye to my mother as she left to go back "home," as we began calling our apartment at Shadyside. I remember I was cathed, but I don't remember when it was that they removed it. That night as I became more alert, I vaguely remember the nurse helping me out of bed and to the bathroom several times. Each time she had to unhook a number of electrodes that were connected to me all over, apparently still monitoring my vitals overnight. I still had IV's also at this point. There were wraps around the lower half of my legs that "breathed" every now and then to keep the blood circulating and prevent any clotting.
Thursday, November 18, The Day After:
That morning I was still very groggy. It wasn't until then that I noticed I wasn't having spasms at all! I laid there testing things by trying to make all kinds of silly faces - - nothing!! They brought me a full breakfast of scrambled eggs and a lot of other food that I couldn't touch. I don't remember feeling any pain, just not able to move much. The back of my head felt mostly numb, and my head in general felt very heavy and tight like it was packed full of heavy, wet cotton or something. There was a bandage over my incision. I remember someone, maybe one of the resident doctors, visiting and doing the normal run of tests . . . smile real big, stick out your tongue, squeeze your eyes shut tight, squeeze my fingers hard as you can, a series of quick light rubs of his hands along both sides of my face, arms and legs, does it feel the same on each side? etc . . . He said I must be sure to stretch my neck from side to side a lot so that it doesn't lock up. At some point during the day, my boss called. He was in the Pittsburgh area and wondered if I was okay, and could he stop in. I told him I felt great, and that it'd be just fine if he stopped in! I must have been really drugged at this point. I was still in the constant care unit, in and out of sleep quite a bit, and probably looking like I'd just had brain surgery the day before. Not in much condition for visitors, much less my boss! At some point early in the day, they removed my IV's, and disconnected the monitors. Dr. Kassam came by at one point to see how I was, and to explain the surgery, although he had to explain it to me all over again a few days later. I had four color pictures taken from the view of the microscope during the surgery. They show my cerebellum in one, the first view of the 7th and 8th nerves in the next. The third picture is great of the artery and the padding behind it. The fourth is another picture of the artery and nerves from a further distance. Dr. Kassam explained that what they found was something they really don't like to see when they go in. A large artery was looped right between the 7th and 8th nerves and compressing the 7th nerve. The artery had a lot of hair-like little branches and the whole procedure of decompressing the nerve had to be conducted very carefully so as to not break any part of the artery, and also not damage the 8th (auditory) nerve. Thanks to the endoscope which made it possible for Drs. Kassam and Horowitz to get a much better view of things, and thanks to the artery's branches being longer and easier to manipulate without breaking, the surgery was completely successful. My hearing seemed fine, although everything sounded as if it was underwater, which is very normal. Since I woke up, I hadn't felt the slightest tremor of HFS, and in addition, there were no signs of weakness! After a full lunch was brought in, and taken away again without having been touched, they moved me up to a room on the 8th floor. Shortly after I was settled here, I was able to get up, wash up a bit and change out of the gown I'd had on since before the surgery. At this point, the nurses were giving me shots of Demerol about ever 4-6 hours, and I was taking Actifed for the fluid in my head, along with Colace (a stool softener to prevent straining.) In the afternoon, I felt pretty good, comfortable in my bed with my own soft pillow from home (thankfully I had remembered to take that important bit of advice), and I was actually feeling pretty alert and sociable when my boss showed up to visit with my mother and me. However, I really don't remember much of the visit or what we talked about, only that he stayed a little long. My mother tells me that I was actually quite sociable though, and no, I didn't say anything to embarrass myself! That night I had a lot of phone calls, some of which I remember clearly, others I have no recollection of and am only aware of because people told me later they had called me that night. All during this first day, and all through the night it seemed like nurses were checking my vitals on the hour, every hour. By the end of my hospital stay, these checks had slowed down to only a couple of times a day. I seemed to have no trouble sleeping at first that night. But halfway through the night, I woke up from a terrible headache and I was sweating. I sat up with a start for some reason, and as I did I felt a small stream of fluid running out of the right (HFS side) nostril. The feeling was like nothing I had ever felt from a cold or sinus congestion. The fluid felt like it was coming from somewhere far back in the nasal passage, and it felt like a continuous flow that only stopped if I tilted my head back. From reading other journals of MVD, I knew right away that this had to be a CSF (Cerebral Spinal Fluid) leak. I knew this needed immediate attention because a loss of CSF can be very serious if not attended to. I called the nurses' station right away, and I remember I said, "I have a CSF leak coming from my nose!" In no time several people came in the room looking for stains on the sheets since CSF makes a unique mark. They were saying things like, "Get an IV line in, they're going to want an IV," and "Let's see if we can get a sample, they're going to want a sample," and to me "How do you know about CSF leak, anyway?" They told me to lean my head over as they tried to collect a sample. Then the resident doctor came in and was also trying to get a look at the actual fluid on some tissue that he held under my nose to make sure it was CSF. He must've called Dr. Kassam who at that point ordered a lumbar drain. Everything happened so quickly, and the next thing I knew the doctor came back carrying a lot of items required to do the lumbar puncture. He asked me to lie on my side and then gave me a shot in my lower back to numb the area. I'd had epidural blocks when I had children which weren't too bad, so I wasn't expecting this to be any big deal. However, this turned out to be very different for some reason. This hurt! It seemed to take some doing for him to get the needle placed just right in my spine. A few times he hit a nerve that sent shocks of pain down my legs all the way to my toes. I was not too upset, just very glad when he was finally done. Then the nurses set about leveling the drain. They told me to get comfortable because once in position, I was not supposed to scoot up or slide down in bed. I had to stay level with the drain. I did not have to lie flat, which was nice because I was much more comfortable reclining at about 45 degrees anyway. They actually preferred me to be more upright. The drain was double-clamped to a pole and leveled at "mid-brain." From then on, any time I had to get up to use the bathroom or whatever, I had to call a nurse to clamp the drain closed. Then if I did go anywhere I had to pull my little pole along with me, not much worse than an IV pole other than the fact that there was not a lot of slack in the length of the tube. Also, at this point, the pole I was using had defective wheels and didn't really roll. You more or less had to drag it. I was very afraid of getting tangled and ripping the whole thing right out of my back! Also I was nervous about making sure the tubes were clamped shut when I was getting out of bed because the nurse had told me if the drain was lower than my head for too long and the tubes were open, I could lose a lot of CS fluid which could be dangerous.
Friday, November 19, Two Days Post-op:
I was awoken before dawn, as is usual in the hospital. I don't know why those residents are required to start their rounds so early in the morning! But thankfully I had slept fairly well after the excitement of a few hours ago. I didn't think I felt too badly when I woke up. My head felt very full of fluid behind my ear, and heavy like they had sealed the inside of my skull with cement. They had taken the bandage off my incision the day before, but it didn't bother me at all since it was mostly numb. There was a large area above the incision that felt very tender to the touch, and yet the very outer layer of the scalp was numb - - a very strange feeling, like it might feel if there were bandages on my scalp under my hair. For some reason the lumbar drain didn't seem to be draining any fluid, and early in the morning, the resident doctor who had inserted it last night came back to check it. At his initial first glance, he told me he was afraid he may have to start over from the beginning. The thought of doing that whole thing over again was not a pleasant one. But at closer examination, he was able to get the drain going. "I knew I'd done it right the first time!" he said. Whew! I really don't remember much more about Friday, except that I spent most of the day in bed, only getting up to use the bathroom. I had not ventured out into the hall yet. I must have slept quite a bit because the day seemed to go by quickly. By this time I was ordering my meals, but I had almost no appetite, and had hardly eaten at all since Tuesday night. At some point Friday morning, Lois stopped in to check on me. She was very nice as always. Later in the day, Drs. Kassam and Horowitz stopped in, and Dr. Kassam explained the surgery and the photographs to me again. They said they were going to be out of town at a convention tomorrow (Saturday), so they would not be checking in with me until Sunday when Dr. Horowitz would most likely stop in. Possibly I was having headaches during the day, and they were giving me some good drugs, because I really don't remember too much about it. But for whatever reason, the doctors ordered CT scans for me later that day. I am not exactly sure why, but they mentioned later something about wanting to make sure there was no air collecting inside my skull causing pressure. I remember the first series of scans were done at around 9 PM Friday night (don't these people sleep?) The whole process of moving me in my bed along with my little pole was quite a task! The nurses clamped the drain shut, but since the wheels on the pole were defective they had to rest the pole upright at the head of the bed behind me. I held on tightly to the tubing to prevent it once again from getting ripped right out of my back while they wheeled me down the hall into the elevator and down for the scans. I was wondering how they were going to manage the scans with the pole still attached to me, but it ended up not being too difficult because for CT scans they only have to slide your head into the machine. So the only difficulty was getting myself out of my bed, onto the CT bed, and back into my bed again. During that night, Friday night, I awoke again with terrible headaches, sweating, and nausea. The nurses gave me the anti-nausea medications and eventually a good shot of morphine for the pain. The morphine was great, but the pills for the nausea didn't seem to do anything for me because I still ended up getting sick.
Saturday, November 20, Three Days Post-op:
By mid-morning on Saturday, I felt much better. My father had driven to Pittsburgh to spend the weekend with my mother. It was nice to have some more company. That day we did a lot of strolling down the halls, and thankfully my new nurse today was kind enough to hook my drain to a new pole so I didn't have to carry it or drag it anymore. This one actually rolled! At some point during the day, they called me for some more CT scans. This time I went down in a wheelchair and just pushed the pole along in front of me. This was much easier than being wheeled in the bed, especially since the wheels on the pole worked now. The day was otherwise uneventful. I was still not able to eat much at all, especially since the hospital food was not very appealing. Later that evening, Dr. Kassam called to see how I was doing since I'd had a bad night the night before. I was surprised that he had called since he said they were going to be out of town. Also, he caught me off guard because anytime he has greeted me on the phone, he always says, "Hi Stacy, this is Amin," as if we're close friends, and I have to think, "Who is Amin?" He said they had just gotten back in town, and wanted to make sure I was okay. He said he ordered some MR scans for me to once again check to make sure everything looked okay. He said he would be spending some time at home tomorrow (Sunday) but that Dr. Horowitz would be in to see me. Unlike the CT scans, the MRI's require you to be entirely inside the machine, and of course there is no room to drag a pole in there, so needless to say, this one was going to be a little trickier! They didn't call me down until about 10 PM which was actually earlier than expected. My night nurse thought they wouldn't be ready for me until about midnight. This time I went down in a wheel chair again, but first the nurse had to close of all the different valves on the drain, tape them securely closed so they wouldn't accidentally open, and unhook everything off of the pole. Once dismantled, the entire contraption was placed right in my lap. This included the tubing with all of its different valves and clamps, the little drain contraption, and a small plastic bag, which held all of the CSF that the drain had collected over the past two days! Once down on the MRI bed, all of this was simply laid on top of my stomach, and in I went. Thankfully I didn't mind the confined feeling inside the MRI machine, however it was a little uncomfortable to have to lie flat and still for so long (about 45 minutes). Also, they sort of have to brace your head in there, and there really isn't any cushioning to speak of, so this was uncomfortable for my sore, bruised head. Once settled back in my room, and the drain re-hung and leveled off, I was able to sleep fairly well. However, I awoke in the early morning hours with another incredible headache, sweat-drenched, and extreme nausea. This lasted for several hours, and again I was given a shot of morphine, anti-nausea meds, but I still ended up being sick again.
Sunday, November 21, Four Days Post-Op:
That morning as the headache subsided and I was feeling better, I was able to catch up on some sleep from the night before. I'm not sure what time it was, but it was fairly early when surprisingly Dr. Kassam came in. I said that I thought he was supposed to be at home. He explained that he had to come in for an emergency procedure. He said he'd heard that I'd had more headaches. He also said that the MR scans looked exactly the same as before the surgery with the exception of a few small pads of Teflon in there. He felt that the headaches were actually being caused by the drain itself, and since I wasn't have any more sinus leakage, he was going to clamp the drain shut for the day and see how things go. I was feeling great the rest of the day. My parents came in, and we walked some more. We watched football while Mom sat and knitted. It was a very nice day. Dad left for Lancaster around mid afternoon. Supper came and it was my favorite - - a cheeseburger, and not a bad one, considering it was hospital fare and not McDonald's. I was finally able to eat a substantial amount. I was off the Demerol shots now and taking oral pain medications and the Actifed. Later in the evening, one of the resident doctors came to remove the drain - - the moment I'd been waiting for! He gave me a little shot of Novocain since he had to place a small stitch over the opening once the tube was removed. The process was quick and painless, and in no time I had a small stitch and a small bandage on by back rather that that dreadful lumbar drain. I was finally free! Later, I was able to take a shower, which wasn't too difficult. It felt great to have a clean head of hair after 4 days straight of the natural oil treatment! After my shower, I took the first real good look in the mirror. Up until now I had not really bothered, and mostly just enjoyed the relaxed feeling of no spasms, and just smiling and talking with people. When I looked in the mirror I was so surprised at how open my right eye was. I couldn't believe how different I looked. It made me realize that with HFS, my face was continually affected, even when I wasn't having spasms. I don't know if this was because I had become so guarded against the spasms, or if the compression had caused my face to continually contract a little bit, but the difference was amazing. I had never noticed this before the surgery. I continued looking for a while, smiling my biggest possible smile and making every other funny face I could muster. It was so much fun! As I was getting into some nice clean flannel jammies, I realized I had left the bandage on my back and it was soaked. It didn't come off too easily, and I ended up just ripping it off. When I glanced at the bandage I saw some suture threads on it, and I thought I had ripped that little stitch right out of my back! I called the nurse to take a look, and she said everything looked fine. Thankfully, the resident doctor must've just bandaged up his snippets of thread! I had felt great all day, but as far as I could remember, I had also felt pretty great the last two days. The real test was making it through the night without any headaches so that I could hopefully be discharged from the hospital tomorrow.
Monday, November 22, Day Five Post-Op:
I made it through the night, and had only woken once for a dose of pain medication. Early Monday morning, before dawn, the resident doctors began arriving to perform their usual battery of tests. Other mornings I saw maybe one of the doctors. This morning, three different doctors came in and went through the same routine. The last one finished the testing by doing a final test for any CSF leak. He put my bed in the most upright position and asked me to sit up straight with my chin tucked as far as possible into my chest. Needless to say, this is not a very comfortable position for someone recovering from brain surgery. He then left the room and told me to just hold that position, and that he'd be back in about five minutes. Well, I couldn't see the clock from where I was, and each minute probably seemed like 10 minutes to me anyway. I waited . . .and waited . . .an waited for probably about fifteen minutes before I decided this doctor had forgotten about me and probably wasn't coming back! My nurse gave me the good news at around 9 AM that I had been cleared for take-off. She was so nice and happy for me that my surgery was successful and that I was going home. I remember talking with her about all of the different patients she sees every day - - people who had been afraid to smile for years because of facial pain, people who were constantly sick and could hardly function because of disabling vertigo. She told me about one girl who'd recently had MVD for hemifacial spasm and who had to undergo surgery twice in about a week to completely fix everything, and that thankfully the second surgery had worked for her. I thought it was amazing that she saw this kind of thing every day. I told her that back home, no one has ever heard of such things, and that even the doctors often don't know much about it. By the time my mother came to drive me back "home," I was dressed in real clothes (except for my slippers), felt clean and fresh from the shower the night before, and generally felt like a real person again. It was great being wheeled down the hall, although I really didn't feel I needed the wheelchair. I was smiling at everyone we passed. The mile-and-a-half car ride through the city's stop-and-go traffic was a killer though. I felt every little bump, and minded it every time I had to brace myself for the slightest touch of the brakes. I kept my pillow behind my head for support and protection. At that point I couldn't imagine a four-hour drive home over the mountains of Pennsylvania in just two days. We stopped at a CVS near our suite to fill my prescriptions and to pick up some Actifed. By the time we arrived "home" and had a little lunch, I was worn out and ready for a good nap. It was difficult sleeping in a regular bed, and by the time I woke up, I was drenched in sweat and aching quite a bit. However, I soon felt well enough to take a short stroll outside before dark. I decided to call Lois then to set up a time for Wednesday to have my sutures removed. She told me to just show up sometime between 9 and 10 AM. As far as the post-op audiogram, she said I could take care of that tomorrow (Tuesday) if we had time and wanted to get that out of the way. I noticed that a large bruise covering about half of the underside of my left forearm was looking impressively colorful. This bruise was from the arterial line the anesthesiologists had used during surgery, and from looking at the bruise, I was thankful that this was something they had taken care of while I was asleep. Early in the evening, a large package arrived from my sister and my brother and his wife. It was a gift box filled with goodies including chocolates, magazines, a movie, a phone card, and more. I used the phone card right away to call some friends, namely one friend from my area that has HFS but doesn't have Internetaccess. She will be coming to Pittsburgh in June for MVD, and she appreciated hearing about my experience. Later that night, my mother and I watched the movie. It was nice that our suite included a VCR. I did not sleep well at all Monday night. I had incredibly fantastic dreams, and woke up several times sweated and aching. My head still felt quite heavy from the fluid retained behind my ear, the bruises on my head from the pins were painful, and even my rump ached from four days of Demerol shots! Lying down for hours on a hard flat bed was definitely not ideal for my condition.
Tuesday, November 23, Six Days Post-Op:
After being up for a few hours and forcing down some breakfast (I still had very little appetite), I began feeling better. Mom and I headed back to the hospital late in the morning for the hearing tests. By now we are experts at finding our way around, and we are comfortable using the valet parking which is reasonably priced. I was not looking forward to the audiogram because I had remembered that before the surgery, some of those plugs that were forced into my ear were uncomfortable. I could only imagine how uncomfortable it would feel now! But my worries were unfounded because the tests were not as involved as they were previously. They were quick and painless. The doctor said that my hearing was 100 % in my right (surgery side) ear, but that my left ear was down a little. He said this was normal because of the positioning during surgery. However when I told Dr. Kassam and Lois about this later, they did not seem to understand why the hearing in my left ear would have been affected at all. We went back "home" for a light lunch and more napping. This time I slept out on the sofa where I could prop myself up in a more reclining position. Thankfully the weather was very mild and sunny for November, and I was able to head outside for another short walk in the afternoon. This time I walked to the quaint little Shadyside market for a quart of milk for breakfast the next morning. Mom and I spent most of the day gradually packing up our belongings, and taking short trips to the car. I did not mind carrying things and doing the stairs, but I was not allowed to lift more than 5 or ten pounds, so I was only able to take a few light items out at a time. But by the end of the day, the car was packed except for a change of clothes and some toiletries and breakfast. I spent the night out on the sofa and was able to sleep a little better, however I still woke up several times, once for some pain medication, and spent most of the night dreaming more fantastic dreams, and alternating between sweating and shivering.
Wednesday, November 24, Seven Days Post-Op, and Date of Departure for Home:
Mom and I woke up early. I wanted to shower, which I knew would take at least twice as long as normal. We wanted to make sure we arrived at Dr. Kassam's office before 9:00 so we could head home as shortly thereafter as possible. This was the fourth journey to or from the hospital since I'd been released, and each trip was getting easier. In fact this trip I hardly minded at all, but still felt better with a pillow tucked behind my head. We arrived at the doctor's office in plenty of time (8:30 AM!) As we were waiting, Dr. Jannetta came by to wish the secretaries at the front desk a happy Thanksgiving. It was nice to see him, and he looked well, but I did not go out of my way to greet him. I just whispered to my mother who he was. I know it's strange, but after everything I have heard and read about him, it's been kind of like seeing a celebrity every time I've seen him. Soon Lois was there calling me back to an examination room. We talked briefly about how I was doing before she had me lie down so she could snip the sutures. This was not painful at all, in fact I hardly felt anything because I was still numb around the incision. I asked if Dr. Kassam was around because I really wanted to see him once more and thank him for the incredible job he and Dr. Horowitz had done. Lois went to fetch my mother from the waiting room and then soon came back with Dr. Kassam. We had a very nice conversation. Dr. Kassam explained again how very fortunate I had been. He said that a year ago, without the endoscope, he most likely would have had to take my hearing because of the artery's position between the 7th and 8th nerves. He also said I was so fortunate that the structure of my particular artery made it easier for him to manipulate it without breaking it. He said that if the little fine hair-like branches on the artery had been shorter, he might not have been able to move it without breaking one of those "hairs" and therefore causing a stroke. He even might have had to close without decompressing the nerve or correcting the spasms. In regards to my CSF leak, Dr. Kassam thought that possibly it was not a true CSF leak after all. He explained that there is an air pocket within the skull behind the ear that tends to collect fluid during MVD. Anything that collects in that air pocket will often drain out of the nasal passages after surgery. Often times that fluid will include some CSF, so it is difficult to determine if there is an actual leak or not. Dr. Kassam said he preferred to play it safe, as he usually would, but especially in this situation since the drainage was also accompanied by the headache. Dr. Kassam also talked with me about the Circle of Friends, and mentioned by name some of the people who had recently undergone MVD with him who were from the support group. It seemed to me that he is very interested in his patients' progress and particularly keeps track of those that come to him from the Circle of Friends. He also talked about the Botox report he is soon releasing. He said that I will be #44 or #45 of the almost 90 patients in his study that had received Botox prior to coming to Pittsburgh and had experienced a successful MVD. He mentioned my ophthalmologist with whom he has been in personal contact regarding Botox injections for hemifacial spasm. Dr. Kassam said they are hoping to make a more concerted effort to "get the word out" about HFS, Botox, and MVD. He and Dr. Horowitz are considering organizing a convention next year for the purpose of educating physicians about MVD and the recent developments regarding the procedure and the research on Botox and said he would like to invite some of his patients to provide testimonials of their experiences with HFS and MVD. He also said he is working on a paper explaining the differences between hemifacial spasm and blepharospasm, hoping to aid physicians in making a more accurate diagnosis of HFS. After our visit, it was time for the long drive home. It seemed to go quickly, even though there was holiday traffic on the Turnpike, and it was raining during about half of the trip. I did not mind the altitude changes in the mountains as much as I thought. In fact, I was feeling so good that I even drove a good part of the way home, of course with a pillow still tucked behind my head. I really was not supposed to be driving, but I felt extremely alert, and it seemed to me that driving home was even easier than the drive out to Pittsburgh because I could see with both eyes now! All in all, I found the whole experience absolutely incredible, although of course I hope I will never have to do it again. The pre-surgery anxiety I found to be much harder than the post-surgery recovery. I think I will never quite get over being amazed at the small miracle that took place during those 9 days. And I will forever be grateful to the people who made it happen, and who made my stay in Pittsburgh easier because of their kindness.
Sunday, November 18, 2001 Two Years Post-Op:
Two years ago I thought I'd never get over the sheer pleasure of being able to smile and laugh and talk to people (among a zillion other everyday things), but it has actually become a normal part of who I am again, and I can totally be myself without having to think of fighting those awful spasms. Now as I keep up with the e-mails from the group, I often take time to remember what it was like to live with HFS every moment of every day. It was very difficult to live with, and I am so thankful that I was able to find relief through the surgery. I wish everyone the strength to live with it if they have to. This group of people was the instrument that gave me the courage and the stamina to pursue the surgery and to fight for healthcare coverage, gave me more information than I could have imagined, directed me to several of the best surgeons, and I am so grateful to those of you who helped me through it. Thanks again to Dr. Kassam and Dr. Horowitz and Lois and everyone at UPMC! After two years, I still have a completely relaxed face thanks to their talent, expertise and excellent care!
Sunday, November 17, 2002 Three Years Post-Op:
Wow - today IS my THREE-year anniversary of being 100% totally spasm-free! It's hard to believe it's been that long, and I can't imagine how my life would be now if I were still trying to cope with those horrible spasms that left the whole right side of my face and neck feeling tired by the end of the day. Living everyday without being afraid to smile or laugh is still absolutely wonderful.Thanks again to this group for helping me through the difficulties of living with HFS and supporting me through the surgery. And again, thanks to Drs. Kassam and Horowitz for doing an amazing thing for me.