Acoustic Neuroma Association of NJ


Volume VIII, No. 4 Newsletter June, 2004

Chapter Meeting, April 18
Hackensack University Medical Center
Hackensack NJ.

Dr. Richard Winters
Kathie Belonger introduced our speaker, Dr. Richard M. Winters, medical director of Hackensack’s recently opened Center for Facial Nerve Disorders and Facial Reanimation. Dr. Winter’s topic for the meeting was “Facial Restoration and Reanimation in Patients with Facial Paralysis.” He presented a very thorough and well illustrated coverage of the types of surgical procedures he has performed at the Center for acoustic neuroma and other patients having facial palsy. He traced the muscles of facial expression and showed how the surgeon can go about repairing problems with the eyes or mouth, even adding a cosmetic touch here and there. He described some procedures as fairly straightforward (e.g., fixing eye droop, mouth droop, lip muscle weakness), whereas facial reanimation involving complex nerve structures and muscle attachment is more challenging. For cases of facial paralysis following AN surgery, even deciding whether to operate or wait for spontaneous recovery can be problematic. People recover at different rates. What is the extent of nerve damage? Will the nerve regrow? Will the muscle be receptive or has it been too badly damaged? Dr. Winters gave examples of a cross facial nerve graft and a muscle transfer procedure. He observed that the type of surgery done at the Center is not at the same level of risk to the patient as an intercranial AN resection. Still, he felt that the age,expectations and medical history of the patient always need to be considered carefully. Not all procedures are completely successful and the trauma involved may not be worth the final result for older patients. During the question and answer period following the presentation, Dr. Winters noted that insurance routinely covers the types of surgery he performs. He said he is not a big fan of electrical stimulation therapy. He said there is little that can be done for cases of synkinesis, uncoordinated facial movements (e.g., a smile may cause eye closure), which is possibly caused by abnormal nerve regeneration.

Before joining the medical staff at Hackensack in 1998, Dr. Winters completed a residency at New York Hospital/Cornell Medical Center and then continued his training at the Buncke Clinic in San Francisco. He worked there for one year alongside Dr.Harry Buncke, who is regarded as one of the pioneers in microsurgery and facial reanimation surgery.

“The strongest have their moments of fatigue.”
Nietzsche ~

Article on Fatigue
Many thanks to all those who emailed or phoned in response to our request for information about personal experiences with post-treatement fatigue. The article below, “Acoustic Neuroma and Fatigue,” was strengthened greatly by reference to these specific accounts.

Auditory Brainstem Implant Update
In the Sept 2001 issue of our newsletter, Dr. Jed Kwartler (Ear Specialty Group) described “Auditory Brainstem Implant Surgery for NF2 Patients.” He noted that ABI involves major surgery and is not for AN patients having unilateral hearing loss. ABI was developed primarily for NF2 patients whose auditory nerves have been destroyed by bilateral tumors. The implant is placed on the cochlear nucleus portion of the brain-stem so that sound can be sent directly to the brain, bypassing the inner ear and auditory nerve. Since FDA approval in 2000, the ABI has been implanted in more than 300 patients world-wide. And now - Press Release, Jan 2004 - the House Ear Institute has announced the creation of an improved device, the Penetrating Electrode Auditory Brainstem Implant (PABI). The PABI, which is designed to provide greater speech recog-nition and comprehension of more environmental sounds, has been successfully implanted in two patients by HEI surgeons Dr. William Hitselberger and Dr. Derald Brackmann. One patient said soon after her device was activated: “I’m hearing paper crinkling, doors closing, and voices - I can tell when someone is speaking. I can’t wait to hear my childrens’ voices.” Commenting on HEI’s achievement, Dr. Kwartler has said: “The idea for the penetrating electrodes in the PABI flows from the idea that if discrete areas within the cochlear nucleus can be stimulated, then hearing quality will be better. This advance is analogous to advances in electrode design in cochlear implants. We will, of course, continue to provide im-plant services here in New Jersey and incorporate this new design once it is fully approved.”

¨The Hackensack University Medical Center has announced the opening of its Center for Facial Nerve Disorders and Facial Reanimation. The center will provide comprehensive services for patients who have experienced facial paralysis due to a disorder of the facial nerve. The medical director of the center is Dr. Richard M. Winters, a plastic/reconstructive surgeon on the staff at Hackensack since 1998. Dr. Winters did residency at NYHospital/Cornell Medical Center in NYCity and completed a fellowship in reconstructive microsurgery at the Buncke Clinic in San Francisco. For further information, call the center at 201-996-5588 and see Hackensack’s website at

¨Dr. Fred Evans, who is a member of ANA/NJ’s Medical Advisory Board, was speaker at the Berks County ANA Chapter meeting held at Reading Hospital, October 25, 2003. His topic was “Sleep, Fatigue and Memory Problems in Chronic Illness.”

Dr. Scott Kay in the Spotlight

Dr. Scott Kay
Interview by Kristin Ingersoll

Dr. Scott Kay may well have had a different career in a different place were it not for the role of chance. Some might call it fate. Already a married man with two small children he headed for Miami to do a fellowship in Cosmetic Plastic Surgery. Upon his arrival he discovered that the doctor he was to work with had experienced an accident that left him with no sensation in his hand. As a surgeon, he could no longer practice and decided to retire. Dr.Kay returned to the Philadelphia area and decided to look for a job. Around the same time, the Fellow expected by Dr.Mark May, a renowned Otololaryngologist and pioneer in facial nerve reanimation at Shadyside Hospital in Pittsburgh, also had an accident and had to withdraw. Dr.May reached out to Dr.Kay to fill the fellowship. Doing so turned out to be a life-altering event for Dr.Kay. In a sense, it changed not only what he did, but also who he was. Among other things, it was here that Scott Kay came to understand the devastating impact that facial paralysis had on people and to learn about the options and limitations of what could be done for them. Some of those affected were acoustic neuroma patients.

Scott Kay always wanted to be a doctor, although he thinks his earliest ambitions may have involved becoming a Veterinarian. He was a serious student and enjoyed school, particularly Biology. He grew up outside Philadelphia with his parents and sister. As a boy he saw his grand-father very sick with cancer. This may have impacted his interest in medicine but he knows he always wanted to help people. Being naturally competitive, he felt the need to strive beyond being an Internist and admits initially being attracted to the glamour of cosmetic surgery. The artistic aspect also appealed to him. After completing his fellowship in Pittsburgh, Dr.Kay settled with his family in Princeton joining Princeton Otolaryngology Association where he specializes in facial and reconstructive surgery, head and neck surgery, otology, laser surgery and Maxillo-facial trauma. Among the procedures he performs are nerve grafts to reenervate paralyzed faces as well as procedures to protect the eye such as the insertion of gold weights.

Scott Kay is in a reflective place in his life, contemplating the choices he’s made and the direction his life has taken. He also thinks about the type of society we live in where Plastic Surgery has become entertainment on prime time TV. He finds that as time goes by he questions the pressure people feel to achieve a standard of beauty and feels increasingly accepting of differences from that accepted ideal. He no longer looks at people as he did in the early years, thinking how he might improve them.

The one thing Dr.Kay is crystal clear about is that his kids are the best things he ever did. He thinks fondly of their early years although the budget was tight and they didn’t have a lot of material things. Mitchell is now 15 years old and Melissa is 13 and they are strikingly good looking children. Dr.Kay also says he likes what he does and he especially likes getting to know his patients. Since he works and lives in the same community, he sees the fruits of his efforts when he is at the gym or on the street. He is confident in his skills and experience, but as in his early days at school he prepares in advance for each procedure. It’s not hard to imagine how Scott Kay engages his patients as he easily shifted from subject to questioner during our interview, naturally assuming the role of listener and teacher. He says he feels close to his patients and it’s easy to understand why.

Currently Dr.Kay is training for his annual charity 500-mile bike ride, which will take place from July 10th-17th. They will ride from Burlington, VT to Princeton, NJ, raising money for Anchor House Foundation. The money raised (last year $400,000) sustains the programs and shelter for children. For more information, check out, or call 609-278-9495. Dr.Kay is an enthusiastic cyclist and enjoys the camaraderie of group rides. Many of the same people ride year after year and have formed a sort of community.

Dr.Kay is a member of ANA/NJ’s Medical Advisory Board and gave an informative presentation on “Tinnitus” at the October 2002 ANA/NJ Conference. He discussed the various causes of tinnitus and treatment options. He also provided information regarding accessing some of those treatments, as well as Internet information. He suggested possible life style changes that might reduce the severity or response to tinnitus, including getting adequate sleep, stress reduction, dietary and medication changes. Between his medical practice and his bicycle training, Dr.Kay admits he has little time for other things. With his annual bike ride just around the corner, training rides are consuming increasing amounts of time. When not on the road with his bicycle, he is “spinning” at the gym. He seems eager to see what the future has in store for him and is open to the changes that will inevitably lie ahead.

Acoustic Neuroma and Fatigue
I. What is the incidence of fatigue as a post-treatment problem for acoustic neuroma patients?

In the 1998 ANA Survey, fatigue ranked sixth in the main listing of fifteen basic “long-term problems”, coming only after hearing loss, eye problems, balance dis-turbance, tinnitus and facial weakness, in that order (Table 4). For microsurgery, 30% of patients (447 out of 1,469) reported fatigue as a long-term problem following treatment. For the small number of radio-surgery patients reporting, 13% (7 of 55) cited fatigue as a problem. The Survey was unable to determine exactly how long fatigue lasted, but it was reported to be a “permanent difficulty” by 30% of the total number of responders (Table 6). A lower incidence of fatigue was reported by patients over age 60, and fewer men than women cited it as a post-treatment problem.

In the 1998 University of Pittsburgh report on long-term outcomes after Gamma Knife radiosurgery for acoustic neuroma, Table 3 listed complications described by 36 of 115 patients. Balance problems headed the list (7 patients, 6%). No patient described fatigue as a problem.

A recent survey from Denmark has looked at the long-term impact of surgery for 716 acoustic neuroma patients for the period 1976-2000. The patients responded to a questionnaire at a median of 11.5 years after surgery. They were asked to consider carefully whether the operation was the true reason for any changes they experienced subsequently. For 400 patients with tumor size >2.0cm, fatigue in the years after surgery was reported as follows:

Fatigue No. %
Better 14 4
Unchanged 142 41
A little worse 119 34
Much worse 70 20
No answer 55 14

For the 316 patients whose tumor size was <2.0cm, the distribution was very similar.

The study also compared 225 patients who opted for wait-and-watch following their diagnosis of acoustic neuroma. Interestingly, while 66% said their fatigue was unchanged during the observation period (a median of 3.4 years after diagnosis), 27% said it was “a little worse” and 13% said it was “much worse.”

Our own ANA/NJ records provide another glimpse at the incidence of fatigue. For the 125 surgery patients listed in our Directory, 19 (15%) have reported varying degrees of fatigue as a post-treatment problem. This low figure is a bit suspect, however; fatigue is most likely underreported in the Directory since many patients tend to view it as a normal, expected outcome not needing mention. For radiosurgery (Gamma Knife) and radiotherapy (Linac, FSR), two out of a total of 22 patients reported fatigue: one case (FSR) was said to be quite severe, occurring about 6 weeks after treatment and lasting 6-8 weeks, while the second involving Gamma Knife was recalled as moderate and short-term.

II. How is fatigue defined and what are some examples for acoustic neuroma?

Fatigue is a persistent feeling of listlessness and lack of energy. It’s a tiredness not related to physical activity; in fact, one of its main characteristics is reduced motivation and capacity for physical and/or mental activity. Rest or sleep never fully relieve the condition. As one patient has said: “no matter how much sleep, or vacation, or relaxation, there is always that heaviness and lack of energy.” Fatigue of this type is a common experience of brain tumor patients. It can seriously affect emotional well-being, social ability and quality of life in general.

As a general rule, radiosurgery patients do not describe this type of fatigue as a post-treatment problem. And fortunately, too, probably the majority of AN patients who undergo microsurgery will experience such fatigue for only a relatively brief period following treatment. That is, for a time there is a dramatic decrease in energy because of the emotional impact of the diagnosis and the trauma of anesthesia and a long surgery, but usually within 3-4 months the patient “bounces back” and resumes normal activity. As one ANA/NJ member recalls: “By the beginning of the third month I was driving myself to work and did not experience the fatigue symptoms anymore.” Other surgery patients, however, may continue to feel a profound tiredness lasting for as much as 1 to 5 years or longer. One patient remembers: “Just coming home from the hospital fatigued me terribly. I went right to bed for a nap, and I took a daily nap for 3 months afterwards. . . All I wanted to do was sleep and read and sleep some more! [One year after surgery] marked the time when I was starting to feel normal again.” Another writes: “Recovering from surgery is the first time that I recall being fatigued on a regular basis. . . My surgery was in July 2001 and fatigue is still a constant problem. . . I’ve tried vitamins, a healthy diet and a regular exercise program but the fatigue continued.” A third patient reports: “My surgery was in 1997 . . . and it took about 5 years before I felt that my fatigue had completely gone. Three of those first 5 years I had debilitating headaches every day. . . Sleeping did not relieve the fatigue because I had trouble sleeping. . . Also I was being treated for depression [and the medications caused fatigue]. . .It took my body much longer than the milestones that the [doctors] set - i.e., “Go back to work after 12-14 weeks; one year for recovery.” Most unfortunately, one patient reports that her fatigue has lasted for 25 years. She writes that she is still able to distinguish this AN-related fatigue “as a ‘heavy-head’ type of sensation as opposed to physical fatigue. [It’s] an inability to think sharply [and] keep my mind focused.”

III. What are the causes of fatigue for acoustic neuroma patients?

Some of our members report having had years of pre-treatment fatigue, which points to the tumor itself as the root cause of the problem. We know that as an acoustic neuroma grows it presses on nerves and vital structures such as the brainstem. As a consequence, the body is forced to expend energy adjusting to hearing, balance and other difficulties that we know as the symptoms of AN. For some patients, for example, the tinnitus symptom can result in serious sleep problems, stress and irritability - all leading to fatigue. The National Cancer Institute notes that a tumor can also cause fatigue directly by forming toxic substances in the body that interfere with normal cell functions. For example, TNF (tumor necrosis factor) can be produced by a tumor and cause a decrease in protein stores in muscles, which forces the body to work harder to perform normal functions. Researchers are currently looking at how the body’s own immune system chemicals, notably cytokines, may act to cause fatigue. In sum, an acoustic neuroma can act as an energy drain even before its presence is diagnosed. Since the tumor itself is identifiable as the culprit, it follows that its surgical removal, or radiation to stop its growth, should take care of the problem of fatigue once and for all. Why then, as described earlier, are some AN patients plagued by fatigue for many years following treatment?

For this we need to look no further than to the act of surgery itself and its potential for unintended complications. Consider some of the highlights of acoustic neuroma surgery, including: a very long surgery under general anesthesia, the opening of the skull, muscle incisions, bone dust accrual from drilling to expose the tumor for removal, sensitive nerves and vital structures placed in jeopardy, closure of the skull. Even under the best of conditions, things can happen in this surgical arena to cause troublesome post-treatment problems. Indeed, the very integrity of the brain and its complex, bilateral circuitry has been tampered with and abused. We are reminded of that wide-ranging list of post-treatment problems reported in the 1998 ANA Survey: hearing, balance disturbance, eye problems, tinnitus, facial weakness or numbness, fatigue, memory, concentration, headache, smell, speech, swallowing, depression, sleep. Persistent fatigue could be explained in terms of the essential time and energy needed for the brain to try to repair itself following a serious surgical trauma. But most patients explain their fatigue as part of a continuing nexus of interrelated postop problems. One patient speaks of how a combination of “loss of hearing, vertigo from the vestibular nerve resection, and tinnitus” all drain her energy in “an exhausting series of compensations.” Another patient says: “I always try so hard to hear, to concentrate and to stay upright, that I exhaust myself.” Or again, chronic pain due to headache (one patient is ready to blame the retrosigmoid approach for this) figures importantly in numerous patient explanations. Depression and fatigue due to self-consciousness over facial weakness is another connection being made. Anti-depressants and pain medications, patients report, often add to the fatigue.

Dr. Wendy Harpham at the Presbyterian Hospital, Dallas, TX, gives us another example of the interconnectedness of things. “Fatigue,” she writes, “can trigger a cascade of practical, social, financial, and emotional problems that interfere with patients’ functioning and resting, and which, in turn, exacerbate the fatigue, dampen patients’ outlook, and worsen anxiety and depression - all of which can exacerbate fatigue.” (See “Resolving the Frustration of Fatigue,” CA Cancer Journal for Clinicians, vol.49, 1999)

AN patients observe how life experiences over the long term can sometimes confuse their perception of fatigue. Five years after treatment, one patient’s AN-related fatigue was figuratively trumped by the severe pain, depression and fatigue of fibromyalgia. Cases of hypothyroidism have also muddied the waters for some. And one patient observes how, a decade after treatment, “it’s hard to tell [whether] fatigue, anger, or depression are related to the surgery or just part of life.” Still, the causative link to surgery remains. Physicians at treating centers for acoustic neuroma are beginning to recognize the need to address fatigue as an important Quality of Life issue.

Editor’s note: Part IV, How can I cope with long-term fatigue? will appear in the next issue of the newsletter. Please email or phone Dick Barker if you would like to contribute information for Part IV or if you would like to make an observation on any part of the article. All communications will be appreciated.
Please indicate whether or not you can be quoted for the newsletter. Names will not be used.

Making a Medical Decision
Dr. Cole Giller’s book, Port in the Storm: How to Make a Medical Decision and Live to Tell about It (LifeLine Press, 2004), was inspired by the author’s years of experience as a neurosurgeon counseling acoustic neuroma patients. He saw the need for a practical and compassionate guidebook to help anxious patients choose between the growing number of treatment options made available by modern medical science. For Dr. Giller, who is an associate professor of neurosurgery at Southwestern Medical School in Dallas, Texas, the decision-making process in- volves more than gathering medical information, although he shows how to do this very well. “More importantly,” he says, “our decisions must also consider our wishes, needs, expectations and fears. Simply knowing about a disease and its treatments does not tell you which of these treatments will make you happy.” “Decisions come to the prepared mind,” Dr.Giller emphasizes. And for this essential preparation he offers a six-step plan:

Identification of Options - types of treatment available, where, and by whom;
Identification of Tradeoffs - the pros and cons of each available treatment;
Discovery of Data - gathering reliable medical information;
Interpretation of Numbers - being skeptical and checking out conflicting claims;
Gathering your Beliefs - trying to keep an open mind;
Contemplation of Meaning - weighing the potential consequences of your choice.

Dr.Giller’s discussion of these six steps comprises the main body of the book. For Step 3, he provides excellent advice on using the Internet and how to read medical books and articles. And don’t forget the doctor, he advises. “Your doctors are some of the most important sources of inform-ation around. Use them to gather data, use them to seek perspective, and use them to test your ideas and plans.”

The final chapters of the book treat such topics as Managing your Doctor, When Doctors Disagree Deciding for Children, Choosing to do Nothing, and Changing your Mind. One feature of the book that needs to be reconsidered is its very strange subtitle. More in keeping with the book’s main message would have been: “How to Make a Medical Decision You Can Live With.”

(Note: The next regular chapter meeting is tentatively scheduled for October 10 at Overlook Hospital. Details will appear in the September 2004 newsletter.)

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