MVD Diary - JoAnna Webb
My Story
I have read the personal accounts of others who have had microvascular decompression (MVD) surgery. Most are success stories. Mine, however, is not. My life changed, but not for the better. It has taken me over two years to decide to submit my story. I consider it therapy—therapy which involves acceptance and moving on. I hope that writing about my experience and sharing it with others will be helpful to my emotional well being.
As I write my story, I will not reveal the name of the neurosurgeon who performed the surgery, nor will I reveal the name or location of the hospital at which the surgery was performed. I have much respect for both, the quite reputable doctor and the prestigious hospital. In no way, do I wish to discourage a prospective patient from having this surgery by my doctor at this facility. I will refer to the doctor as Dr. No Name. Although Dr. No Name is quite experienced in his area, he is also human—he cannot always be perfect. He cannot always make everything better. I presented a very difficult situation. I’m just one who could not be made better. I was not new to MVD surgery. I did experience a successful surgery in 1990 in a different location by a different doctor. Starting from the beginning, I will briefly describe my past history. At the age of 36, I began having the symptoms of hemifacial spasms. The twitching, initially involving my left eyelid, gradually spread down the left side of my face. The left side of my face and mouth were pulling over to one side; my left eye was practically closed. My face was almost in constant spasms. Also, there was a severe pounding sound in my left ear, as the offending artery was affecting my auditory nerve, as well as my facial nerve. After visits to several doctors, I finally found one who identified my problem and made the referral to a neurosurgeon who could perform the necessary surgery. After tolerating the spasms for four and a half years, I had the MVD surgery, which was successful. I did, however, develop Bell’s Palsy about a week later. It resolved in about six weeks. As a result of the surgery, I was left with a mild hearing impairment in my left ear and a slight left facial weakness, which was hardly noticeable to others. I was so happy to be able to smile without embarrassment. I could maintain eye contact as I carried on a conversation; I did not have to turn away to try to hide my previously contorted, spasmodic face. Everything was great for ten years. Then, in 2000, I noticed that my left eye was beginning to twitch. I knew then that the spasms were back. At first, I tried to ignore the gradual return of the spasms, as I did not wish to go through the surgery again. However, after two years, the spasms had become much worse. It reached the point at which some of my coworkers and children, with whom I worked, were commenting on my facial distortion. (I was a speech therapist in the public schools.) I was becoming more and more embarrassed, as the spasms took their toll. Something had to be done. I knew repeat surgeries were more difficult, so I wanted a neurosurgeon with much experience in this area. (My previous neurosurgeon was no longer practicing.) So, after researching on the Internet, I found the one I wanted to do the surgery. In July 2002, after two and a half years of the spasms, I was in surgery again. When I awoke in recovery, Dr. No Name and my husband were there to tell me what had transpired. Upon entry into the skull, the doctor came upon an unsuspected pseudo-aneurysm located on the left vertebral artery. (The required pre-surgery MRI did not reveal any problem.) The aneurysm ruptured. The doctor had to stop the bleeding and discontinue the surgery. Still intubated and under anesthesia, I was transferred to another floor where I underwent cerebral angiography and endovascular coiling of the left vertebral artery. Later, there were no signs of stroke, as had been feared. After spending a week in the hospital, I was able to go home. Of course, the hemifacial spasms were still present. I was to return in a few months for the originally planned surgery. After six weeks of recuperation, I returned to my job at the beginning of the school year. I had to take Coumadin, a blood-thinning drug, to insure clot-free blood flow, now that a main artery to my brain had been sacrificed. (Later, I was switched to daily aspirin, which I continue to take.) As the time for my next surgery drew closer, I made sure everything was in order for my substitute. I assured the children that I would be back in December. Little did I know what lay ahead. Prior to surgery, Dr. No Name said there would be a weakness in my face after the surgery. Judging by the extent of my hemifacial spasms, which included the tonus phenomenon (sustained contraction) and involvement of the platysma (muscle which runs from the neck to the jaw), he obviously suspected permanent damage to my facial nerve. He considered my condition to be profound. As I proceeded through all the pre-surgery tests, I was very calm in anticipation of the surgery. Besides, what could possibly go wrong this time? October 16, 2002, would be a day I would never forget. In recovery, as I was beginning to wake up, I remember being asked to raise each arm. When I attempted to raise my left arm, it immediately collapsed, out of control. I said, in slurred speech, “I’ve had a stroke.” I don’t remember anything after that until someone was coming at me with a tube to put into my nose. While still groggy, I was then instructed to use suction apparatus to clear my mouth of saliva. I had been choking while still asleep; it was apparent that I was unable to swallow. After being transferred from the intensive care unit to a regular room, I’ll never forget when the nurses first got me out of bed to go to the bathroom. My left leg just flopped around; I had no control over it at all. I couldn’t walk. I couldn’t even stand without someone holding on to me. In addition to an uncontrollable leg, I had no sense of balance. Even when attempting to sit up in bed, I would fall over, unless I held on to the rails. Most movement made me dizzy. I also lacked coordination in my left arm. I was unable to perform fine movements with my left hand. I learned all about life in a wheel chair—for the next six weeks. In the few days following surgery, I became aware of more problems resulting from the surgery. The left side of my face was completely paralyzed. I had no sensation on the left side of my face, including my left eye. The condition of my eye was further complicated by the lack of tears. Talking was very difficult, as my speech was almost a whisper; later, it improved, but was labored and raspy. Of course, I could not eat or drink, as I could not swallow. That was the purpose of the tube in my nose, which went down to my stomach; it was my feeding tube. It was attached to a bag of “stuff” which would serve as my food until I was able to swallow. While in the hospital, I made several trips to the ENT so my swallowing ability could be assessed by a FEES (Fiberoptic Endoscopic Evaluation of Swallowing). That is a test in which a camera on the end of a fiberoptic tube was put into my nose down to my throat. It provided direct viewing of my swallowing function on a screen, as I unsuccessfully attempted to swallow blue-dyed applesauce each time. Choking episodes were frightening, not only to myself, but to my husband, who was with me day and night. The possibility of aspiration, which could have led to pneumonia, was great. I learned later that a tracheotomy had been discussed among the doctors. They chose to wait and see how well I could handle the inability to swallow. As I had a strong cough and seemed to be dealing with the problem with the help of the suction equipment, the doctors decided against the tracheotomy. I had been putting ice in my mouth in an effort to satisfy my insatiable thirst. Of course, I couldn’t swallow as the ice melted in my mouth. Day and night, I used the suction tube which was hooked up to a “vacuum” machine. It became my constant companion. A few days after the surgery, I reached into a cup to get ice with my right hand. I noticed that it wasn’t cold; I put it in my left hand. Yes, it was cold! That’s when I realized something was wrong with my right side, too. Further investigation revealed that I had no temperature or pain sensation on my right side. Dr. No Name explained that the small place in the brain stem where he worked was near the site where the nerves cross over, so the sensory pathways to the right side of my body were also affected. So, what happened during the surgery? According to Dr. No Name , there was an unusual amount of scar tissue resulting from the previous MVD surgery. He said this surgery was one of the most difficult he had performed, and he had actually considered stopping without completing the MVD. In dissecting the scar tissue from the various nerves and from the membrane surrounding the brain stem, the nerves had to be moved. These nerves did not respond favorably to manipulation. The facial nerve (VII) was compressed by two arteries and two veins; this area was located closer to the brain than the previous decompression. The part of the nerve that was previously treated was in good shape; those cushions were still intact. The part of the nerve that was being compressed was, according to Dr. No Name , like mashed potatoes—a very beat-up nerve! The doctor could even see the indentation in the nerve made by the constant pounding of the artery against it. Dr. No Name cauterized the two veins and placed Teflon cushions between the arteries and the facial nerve. In lifting one artery to place the cushion, the other side of the artery was against the glosso-pharyngeal nerve, which controls swallowing, so that nerve was also disturbed. In all, there were five cranial nerves affected during the surgery. They were the trigeminal (V), facial (VII), acoustic/vestibular (VIII), glosso-pharyngeal (IX), and vagus (X). Dr. No Name said it may take about six months for my facial nerve to begin functioning again and that some facial weakness would remain. (He had already predicted some facial weakness before surgery.) My balance should also return in several months. Since I thought my condition was temporary, I was OK emotionally. Six months would be a long time, but as long as I knew I would get better, I felt I could get through this ordeal. As the left side of my face was paralyzed, my left eye was suffering from being continuously open. So, the ophthalmologist decided it would be best for me to have a tarsorrhaphy to help protect the cornea. Six days after my MVD surgery, I was taken (by wheel chair, of course) to the ophthalmologist’s office, where the tarsorrhaphy was performed. In this procedure, the lids of my eye were stitched together from the outer corner to about a quarter of the way towards the center. Although I had no feeling in my eye, I was given a shot to numb the area anyway. I remember the doctor saying this tarsorrhaphy could remain three weeks or three months—or as long as it would take for my facial nerve to begin to function, allowing me to blink. The procedure is reversible. (I still have this tarsorrhaphy more than two years later.) My depth perception was definitely affected with one eye almost closed. An antibiotic ointment was used in my eye four times a day for the rest of my hospital stay. While in the hospital, various therapists were helping me. Each time I was wheeled off to therapy, my feeding tube had to be disconnected; so I was left with a tube hanging out of my nose until I was reconnected. I also had to take a supply of tissues with me when I was away from my suction apparatus. I had to do something with the saliva that accumulated in my mouth, so I went through many tissues. I received physical therapy to help with my balance and walking. This was very difficult for me, as my left leg wanted to give way and my body wanted to lean to the left. The therapist had to continuously hold on to me, or I would have collapsed; my leg would buckle without warning. Therapy with the occupational therapist included improving fine left hand movements, as well as overall coordination. The speech therapist tried everything possible, including biofeedback, to try to help me swallow. There was no sign of my swallow returning. Ever since surgery, I was having double vision. I also had problems with people appearing to be turned sideways! To me, the room, the people, everything was distorted. Two weeks after surgery, everything really got crazy! The bathroom, which was in front of my bed, looked like it was on the ceiling! My husband told me later that I told the nurse not to open the bathroom door—that everything would fall out! I remember hanging on to my bed rails for dear life, afraid of falling out of bed! For a long time, it seemed, I felt like I was hanging by my toes over my bed, my head on the bed, with my neck bent out of shape. I wouldn’t move, as I thought I would fall and get hurt. I was definitely “out of it”—totally unaware of my surroundings! After the nurse reported my strange behavior to the doctor, blood tests were done. They revealed that I was dehydrated, and my electrolytes were out of whack. So, an IV was started, and I started coming back to reality. What a trip! After three weeks in the acute care hospital, Dr. No Name decided it was time to move me to the local rehabilitation hospital. I was loaded up in a wheel chair accessible van and transferred across town to my “new home.” In the new hospital, I received intensive physical therapy twice a day. I continued receiving occupational and speech therapy every day. Arrangements were made for me to ride the “wheel chair van” to the other hospital, so I could continue work with the biofeedback machine in an effort to stimulate a swallow. Finally, the day came when I had some positive results during another FEES. I had noticed a few days earlier that something was changing, that maybe my swallowing nerves were beginning to work. During the next test, I swallowed! It was weak, but I swallowed! This happened exactly five weeks after surgery. That day, with my feeding tube still in place, I was allowed to eat (or actually drink) a semi-liquid lunch—my first real food in five weeks! I felt quite conspicuous sitting in the dining room among other patients with a nurse and the speech therapist ready to pounce in case I started choking. The food was delicious! It only took me an hour and a half to get down a small amount of the meal, which included pureed chicken and green beans! I was delighted to see a small chocolate milk shake on my tray; I managed to drink all of that! (I had craved a chocolate milk shake for five weeks!) That was a wonderful day—a milestone in my recovery. Two days later, I had another FEES (my sixth one); my swallow was even stronger than before. The doctor tried giving me water, which is supposed to be the most difficult liquid to swallow. I showed him I could do it! He then decided that it was safe to pull out my feeding tube. What a great day! I was kept in the hospital for a few more days, so my intake of liquid and food could be monitored. We didn’t want to risk another episode of dehydration! Finally, it was time to go home! Six weeks after surgery! But my story doesn’t end here. A new chapter just begins. My husband and I arrived home two days before Thanksgiving. All my family celebrated with the traditional Thanksgiving meal, and so did I. However, mine had to be pureed in a blender! It was still good! Day by day, I graduated to more advanced food textures until I was able to eat normal food. As my swallow is presently good, but still somewhat weak, I have learned to choose mostly soft, moist foods that are easy to swallow. I can handle foods, such as bread or meat, as long as I have plenty to drink. (However, I prefer not to even try eating such foods because of the difficulty.) I was sent home with a walker, as I was still unable to stand or walk by myself. It wasn’t long after I got home, that I learned I could “walk along” the wall and “bounce” from one piece of furniture to another. As I became more proficient with these techniques, I refused to use the walker. I continued physical therapy to improve balance, as well as strength and coordination. Two months later, when I reached a plateau in my therapy, I was discharged. I was able to walk unassisted. The balance problem improved considerably with therapy, but it still remained. I have learned to deal with my deficiency and to compensate the best I can over the past two years. My weakened left side improved with exercises in physical therapy. Even though I continue to exercise, as well as walk vigorously for exercise, I feel the effects of the stroke. When I am tired, the stroke symptoms are quite evident. My inclination is to limp, drag my left leg and let my left arm just hang. My balance problem causes some awkwardness, also. As I’ve had two years to practice, I have learned, with a conscious effort, to carry myself so that I appear relatively normal. While in the rehabilitation hospital, I remember stretching to touch my toes in bed and feeling a strange nerve-related sensation in my right leg. Something was not right. Later, after coming home, the feeling became an almost numb, burning sensation. I also began experiencing pain in my right hip. The doctor ordered a test to check for a blood clot; the test, however, was negative. These feelings continued to get worse and are still present two years later. These sensations, which become worse after standing or exercising for a long time, are related to the disturbance of the nerve pathways during surgery, according to Dr. No Name . Although the temperature and pain sensation in my right hand did return soon after coming home, I continue to have a lack of surface pain and temperature in my right leg and foot. (I learned quickly not to test the bath water temperature with my right foot!) Not being able to feel surface pain, I have experienced some unexplained cuts that bled without my knowledge, not only on my right leg, but on my right arm, as well. I still have distorted sensations on the remaining right side of my body. For example, ice feels like a strange shocking pain, rather than a cold feeling. Several weeks after my return home, I developed an infection in my left eye. It turned out to be caused by MRSA (Methicillin-resistant Staphylococcus aureus). It was suspected that I picked it up in the hospital, and the antibiotic I was using only kept the infection at bay. In addition to the infection, the cornea was suffering from exposure. As I had no tears to keep it moist, my eye had to be continuously taped shut. To make a long story short, I made repeated visits to the ophthalmologist for several weeks. My eye was treated with one antibiotic, then another. After two months of antibiotics, the infection was gone, but the cornea still needed attention. I had to continue keeping my eye taped shut day and night, untaping to use lubricant drops. My eye was kept shut, almost continuously, for about five months. The condition of the cornea did improve. However, my eye was, and still is, visually not functional. Even corrective lenses cannot improve the poor vision in my left eye. While my eye was being treated for the infection, my nose was also having problems. Ever since the feeding tube was removed, my nose often bled. I was advised to see the ENT to find out if I had the MRSA infection in my nose, too. Upon checking my left nostril, the doctor found that I had a fissure, which was not healing. A culture revealed that I also had the MRSA infection in my nose. So, more antibiotics were needed to treat my nose. Although, the infection cleared up, the intermittent bleeding continued. It took about five months for my nose to heal since being discharged from the hospital. When tested a few days after surgery, my hearing was the same as before surgery—a mild hearing loss. However, an audiological evaluation a few months later revealed a total hearing loss in my left ear. The ENT speculated that there was probably so much swelling after surgery that the blood supply to the cochlea was cut off, causing it to gradually deteriorate. My hearing was probably gone before I got out of the hospital; but with so much going on, I didn’t realize it at the time. My right ear, which is normal, was obviously compensating. I did have difficulty localizing sounds after I got home; of course, that was due to having only one good ear. I noticed that the tinnitus increased considerably since the surgery. While in the hospital, I began hearing “Morse code,” high-pitched squeals and rushing water. (Before surgery, I only heard a high-pitched squeal.) Lacking a functional left facial nerve has caused other problems besides facial paralysis. As the facial nerve does not function, neither do the glands on the left side of my face. In addition to the lack of tears in my left eye, there is no moisture in my left nostril. I have an intense desire to drink water, as my lips and mouth get uncomfortably dry. After coming home from the hospital, I was drinking seven to eight quarts of water daily. Now, my fluid intake has gradually decreased to three to four quarts a day. I still have no ability to taste on the left side of my tongue. My jaw has drifted out of alignment, so I have a severe case of TMJ. I usually chew food on the right side, as it is easier (and tastier). When chewing food on the left side, I tend to “lose” it and have to go through tongue contortions in an attempt to “find” the food in my left cheek. I continue to drink with a straw, as I really don’t want to be embarrassed by dribbling liquids down my chin. My speech has improved, although a few sounds are somewhat distorted, due to the paralysis of the left side of my mouth. Sometimes, people have difficulty understanding me. The worst part of the facial paralysis is not being able to smile. I have learned that it is better to have no expression than to try to smile. So, I compensate by avoiding eye contact with people that I may pass, as in a store. I guess I look unfriendly, but they are much better off not seeing an attempted smile! I continue to have difficulties in other areas. My voice has improved considerably over the past two years. However, it can become rather weak, especially after talking a long time. It is difficult for me to talk loudly. I can now speak at a conversational level comfortably. The muscles at the surgery site, which has been opened three times, have atrophied. It is painful to lie on my left side for very long. Occasionally, I experience a deep, severe pain in the area, at which time I cannot move my head. However, after a few minutes the pain subsides. By six months post surgery, my facial nerve function should have returned. Dr. No Name was quite disappointed that I had not shown improvement by that time. He wanted to give it some more time. I held out hope for another six months. I used an electrical stimulator for six months in an effort to stimulate the facial nerve, but to no avail. I have done facial exercises, and I continue to do so. During a return visit, when I asked Dr. No Name how often this (all my problems) happens, he said, “You’re it!” My surgery is obviously embedded in his mind, as he said he can “see” my surgery, even though he has done hundreds of MVD surgeries. Another doctor, whom I saw for an EMG (electromyogram) during a return visit a year later, was shocked to find out all that had happened to me. The percentage for the various risks associated with MVD surgery is so small; however, I amazingly managed to do it all! My EMG was not at all encouraging, as there were hardly any facial nerve responses. Out of approximately 10,000 fibers in the facial nerve, roughly, about a dozen were responsive. In other words, the facial nerve was basically dead. After a year, my hope for nerve recovery dwindled. I did not want to accept the fact that I had reached a plateau in my recovery, not just my facial involvement, but also everything else that was disrupted. I had hoped for so long that this experience was a bad dream, from which I would soon awake. I had to begin to face reality. Obviously, I was not able to return to my job as a speech therapist. When I finally accepted the fact that I would not be able to resume my job, I resigned. Little did I know that my last day of work was really my last day of work. Likewise, my substitute had no idea that she was beginning a permanent job when she started taking my place on her first day. After a year, I had to consider steps to help improve my paralyzed face. The plastic surgeon insisted that I needed a gold weight in my eyelid, along with the tarsorrhaphy, to help protect my cornea. So, I now have a gold weight. My cornea specialist put a tear duct plug in to help retain moisture. My eye seems to have adapted to its condition. Presently, I seldom have to use lubricant drops as I did previously. However, I continue to use a lubricant ointment every night. For a year now, I haven’t had to tape my eye at nights, as I had been doing for so long. The plastic surgeon advised me of the options for facial reanimation. He did, however, want to wait at least eighteen months post surgery before any procedure was performed. In July 2004, twenty-one months after my MVD surgery, I underwent a double procedure to begin facial reanimation. During an all-day surgery, a fascial sling, using the fascia from my right thigh, was placed in the left side of my face from my lips to just above my left ear. This procedure resulted in a more symmetrical appearance. My mouth was centered and lifted so that it no longer sagged. This also helped eliminate a drooling problem, as well as an almost occluded left nostril. Also, I had a cross facial nerve graft, in which the sural (calf) nerve was harvested and grafted on to a branch of my right (good side) facial nerve. It was tunneled across my face, above my lip, all the way to my left ear. It should take six to nine months for the good facial nerve to regenerate through this grafted nerve. The harvesting of the nerve from the back of my right calf has added to my already existing problem with that leg. Now, part of my foot and ankle are definitely numb, which was expected after the nerve was removed. Walking was very difficult after surgery due, especially, to the extraction of the fascia from my right thigh. That pain eventually subsided, but the foot numbness has not. When the nerve successfully regenerates across my face, then another surgery will be performed. At that time, the gracilis muscle (inside my thigh) will be harvested, along with its nerve and blood supply, and placed in the left side of my face. The grafted nerve will be attached to this muscle so that, when I smile, the nerve impulses will be transmitted to the left side, causing movement on that side, along with the movement on the right side. How complicated! This surgery renewed my hope. However, at my three month check-up with the plastic surgeon, there was no sign of nerve regeneration, as there should have been by that time. Very disappointing! Then, at four and a half months after the surgery, I finally began feeling, what seemed to be, the beginning of nerve regeneration. I was elated! Nerve regeneration is indicated by using the Tinel’s sign, a tingling sensation felt by tapping along the implanted nerve. A recent visit with the plastic surgeon, however, revealed that nerve regeneration is not progressing as expected. We have to wait and see. I am trying to be optimistic and anticipate the second part of the reanimation surgery this summer, 2005. Hopefully, all will go well. As my story draws to a close, I feel it necessary to comment on the emotional impact this experience has made in my life. To begin with, I was so optimistic that everything would return to normal; but, of course as time went on, I gradually realized that I needed to accept and deal with my condition. I had to keep my problems in perspective and remind myself that there is always someone worse off. I have learned to be thankful for what is left, including one good eye, one good ear, one good balance nerve and one half of my face that is not paralyzed. I have to remember that I can walk unassisted. I can talk and I can swallow. It has been a difficult two years. It seems that everything I do is a challenge — whether it’s trying not to lose my balance while stooping down to pick something up or seeing the “something is wrong with you” look when talking to a stranger. It stands to reason that I am happiest at home where I am safe from embarrassment. Without the continued support of my husband, family and friends, I know I would not have achieved my present frame of mind, which I consider reasonably healthy. (I’ve had no need for medication.) I do have my emotional hang-ups, however. I avoid children. I try not to give them the opportunity to see my face, as it is peculiar. I do notice when I get the “look,” and children are very good at this. I still cannot handle the stares, even though I know children are only curious. Adults tend to be more discrete with their stares. Pictures are especially painful. I’ve been to several weddings, graduations and family gatherings. When the cameras are brought out, I want to hide. I have refused to be included in most pictures, but when it involved my own son’s wedding, I knew I could not hide. I had to be included in pictures—for him. My advice to someone anticipating MVD surgery? Definitely, have the surgery! Hemifacial spasms are emotionally debilitating. I know. I’ve been there—twice in my life. I also remember the happiness when I was rid of the spasms after the first surgery. I was a new person. I didn’t realize all the little tricks that I had devised to hide my spasms, until they were gone. One should not deprive himself of the chance to make his life better. The odds of what happened to me the second time around are so minute. I harbor no animosity toward my neurosurgeon. He was obviously quite disturbed about the outcome of my surgery. I am convinced that this could have happened to any other doctor who is specialized in this area. There will always be risks in any surgery. We just have to go ahead and take those risks, or we will never give ourselves a chance to make things better. My story ends here—at least, for now. With God’s help, I know I will continue to accept my limitations and move on.UPDATES (2/5/05) Two years after the surgery, I continue to have numerous complications. The left side of my face is completely paralyzed. I am deaf in my left ear. My left eye is visually not functional. I have balance problems. Swallowing is sometimes difficult, depending on the food texture. There is a weakness on the left side of my body, due to the brain stem stroke suffered during the surgery. I also have no surface pain or temperature sensation in my right leg, also due to the stroke. Comments: I believe my experience to be unique. Update (2/1/07): All of the above results of MVD remain the same, which include the facial paralysis. I have recently received word that I now have a date for surgery (February 22, 2007) with a renowned facial reanimation surgeon in Toronto, Canada. It's been a long drawn-out ordeal dealing with insurance (as he is out of network, as well as out of country) since seeing him for a consultation in August 2005. I now have renewed hope for receiving help for my facial paralysis. Update(7/1/07): The facial reanimation procedure failed to be a success. Four months have passed, and still, no movement. Complications, including need for a re-op due to a blood clot, as well as an infection, seemingly worked against my chances of success. Update (07/28/08): It has been five and a half years now since my MVD. I’m still dealing with the problems resulting from the surgery, as described in my diary, but I'm doing well! Due to the fact that I seem to have been blessed with "happy" genes, I think I've done very well adjusting. I'm a very positive person, and I do all I can to help improve myself. I've got to admit, however, that the facial paralysis has been difficult. After two failed facial reanimation surgeries, I'm hoping to, at least, have another procedure soon that will help me attain a more normal appearance. No more attempts at the dynamic part of facial reanimation, though! Update (12/16/08): I had surgery on December 8 by the same specialist in facial reconstruction (now in Seattle, Washington). He used a tendon from my leg to make a static sling to the left side of my face. It looks like a success, as my face is more symmetrical now, and it has helped functionally (no more drooling!).