Download diagnosis - Acoustic Neuroma Association

DIAGNOSIS: ACOUSTIC NEUROMA
WHAT NEXT?
The purpose of this booklet is to inform and prepare patients for the process of pretreatment and post-treatment triumphs and challenges. For a description of various
treatment options, see ANA’s publication, Acoustic Neuroma Basic Overview.
Acoustic tumors are benign tumors arising from the Schwann cells (the insulating
cells) of the eighth cranial nerve, which brings hearing and balance information
from the inner ear to the brain. A more appropriate term is “vestibular
schwannoma” since these tumors typically arise on the vestibular portion of the
nerve. While absolute certainty about the diagnosis can only be obtained by a
tissue sample, radiological diagnosis by MRI is very accurate.
There are several options in the care of patients with acoustic neuroma. Your
physician should recommend one or more options based on your age, general
health, the tumor’s size and configuration and your specific symptoms. You should
decide upon the appropriate management only after considering and discussing all
of your options.
The goal of your treatment should be to minimize side effects and maximize
quality of life. Generally speaking the larger the tumor, the greater the risk of
complications, although advances in treatment strategies and the presence of
centers of excellence have greatly reduced the chances of a poor outcome. Patients
with smaller tumors are more likely to avoid significant complications, but the
potential for issues that may more subtly affect quality of life should not be
underestimated.
Acoustic neuromas (vestibular schwannomas) usually grow slowly. The average
growth rate is about 1 or 2 mm per year. About 2/3 of patients initially present
with hearing symptoms (including tinnitus or head noise) and about 1/3 with
balance symptoms. A small number of patients may develop larger tumors that
present with other symptoms while still having normal hearing and balance
function. With modern diagnostic advances, more small tumors are being
identified, which may provide more varied options for patients.
Since acoustic neuromas are benign and slow growing, only those few cases
initially diagnosed when already very large can be considered to be an emergency
or an urgent problem. Patients should take their time to do all necessary research
and should feel comfortable with their treatment decision once reached. They
should be cautious of anyone who tries to convince them to rush into treatment
before they have taken the time to make an informed choice.
OBSERVATION – WATCH & WAIT / WATCH & SCAN
If a patient chooses the observation / watch and wait option (generally reserved for
smaller tumors), periodic imaging is required. Following initial diagnosis, a
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reasonable plan would be to get a new MRI scan in six months. If there is no
growth, the next scan can be done one year later and then on an annual basis. If
there are any new symptoms, your physician should be notified immediately.
These changes could indicate that the tumor is growing more rapidly. By waiting,
there is a risk you could lose part or all of your hearing in the involved ear.
There are two significant potential pitfalls with observation. First, it is critical that
patients are absolutely prepared to insure that they will follow-through with MRIs
as planned. Second, it is necessary to review all MRIs over time, rather than
comparing any new MRI only to the immediately preceding one. Tumors may
grow slowly enough so that no significant change can be seen over the course of
one 6 or 12 month period even though there is significant growth over years.
If significant growth does occur during the observation period, active treatment
is indicated and you and your physician may decide to choose between one of
two therapies: radiation treatment or microsurgical resection.
RADIATION TREATMENT FOR ACOUSTIC NEUROMA
Radiation treatment for acoustic neuromas is typically done using one of several
methods via which radiation is focused on the actual tumor. That is, a computer
system is used together with MRI data to create a treatment plan by which the
tumor receives a high dose of radiation, while surrounding structures receive a low
dose. This is referred to as a “stereotactic” technique. Stereotactic radiation
therapy, may be referred to as either "stereotactic radiosurgery” or "fractionated
stereotactic radiotherapy" depending upon whether the treatment is done in a
single session or is broken up over several sessions. This noninvasive procedure
can usually be performed on an outpatient basis.
There are several different ways to deliver the type of focused radiation required
for effective treatment of an acoustic neuroma. Gamma Knife, LINAC, Novalis,
XKnife, CyberKnife are all names of specific machines that deliver radiation. In
each case, the beam that radiates the tumor consists of highly charged photons (xrays or gamma rays); the differences lie in the way they produce the photons as
well as the technology they use to focus the beam(s) to the specific area of the
tumor. Proton Beam is a form of radiation treatment that uses a different principle
to focus the radiation energy. You should discuss the various options for radiation
treatment with your physician.
The goal of radiation treatment for acoustic neuroma is to stop or control tumor
growth. The tumor is not removed or eradicated. Radiation is usually used to treat
small and medium-sized acoustic neuromas (<2.5 - 3 cm). Radiation works by
damaging the DNA inside cells and making them unable to divide and reproduce
and by reducing blood supply or nutrients to the tumor. The dose of radiation used
is chosen in order to maximize the effectiveness of treatment (chance of tumor
control), while minimizing the risk to surrounding structures. In that the nerves
involved with the tumor are immediately adjacent, they do receive a dose that is
significant but low enough so as to have acceptable risk.
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Tumors may continue to grow or swell for a period after treatment. Success of the
treatment is eventually determined by the stabilization of tumor growth and in
many cases the tumor then shrinks.
For additional information regarding radiation treatment, please refer to the ANA
patient information booklet, Acoustic Neuroma Basic Overview.
QUESTIONS FOR THE RADIATION MEDICAL PROFESSIONALS
If you have opted for radiation treatment of your tumor, you may want to ask some
of the following questions of your radiation therapist, neurosurgeon, or neurotologist.
Be sure that you are comfortable with the responses:
 How long have you been performing radiation treatment of acoustic neuromas?
Have any problems emerged in any of your patients?
 Have you been certified to do radiation for patients with acoustic neuromas?
 Will this be a one-dose procedure - radiosurgery, or will it consist of several
smaller doses - radiotherapy?
 What type of radiation treatment (e.g., Gamma Knife, LINAC, CyberKnife,
Novalis FSR, proton beam, etc.) do you most commonly perform? What are the
advantages of this type of radiation over the others that are available?
 Why do you recommend this particular form of radiation treatment over others?
 Do you expect hearing, balance or ringing in the ear to be potentially altered by
radiation treatment?
 Do you anticipate that the tumor will swell after treatment? For how long? If
the tumor swells, do you expect there to be any problems? If there are any
problems, how would you treat them?
 What are the long-term side effects of this treatment? Say 10 years or more?
How will I know if something is changing?
 Are physicists involved in the planning of your radiation treatment?
 What symptoms are commonly experienced by your patients after treatment?
How do you define “side effects”?
 What are the more serious complications such as malignancy, hydrocephalus
and others that can happen with treatment and what are the relative frequencies?
 How many of your patients have experienced continued growth of their tumors
following treatment? How many of your patients have you followed long-term
to draw your conclusion? If this happens to me, what would be my best followup procedure? Can I have microsurgery, or can I repeat radiation treatment?
 After radiation treatment, may I go about my business as before treatment, or are
there any special precautions I should take?
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 When and how often should I schedule follow-up MRIs after treatment? Will I
get these MRIs for the rest of my life?
 Why would you choose radiation for me?
STEREOTACTIC RADIATION TREATMENT: WHAT TO EXPECT
The details of radiation treatment techniques differ somewhat from system to
system. Having said that, the process of treatment among devices is relatively
similar. One significant difference is between single fraction treatments, which are
completed in one day and fractionated treatments, broken up over several days or
weeks. Almost all radiosurgical procedures in adults are performed on an
outpatient basis.
SINGLE FRACTION TREATMENT
As part of the pre-treatment work-up, you will undergo a detailed medical history
and physical. This is done in order to be certain that there are no other medical
problems that might influence the treatment. In addition, your physicians might
order additional tests, including specific MRI protocols, needed to confirm the
treatment choice and for later treatment planning.
On the day of treatment, after all official paperwork is completed, you will report
to the Radiotherapy Suite. This is typically very early in the morning. Nearly all
single-fraction treatments are carried out using a “stereotactic head ring.” This is a
device that attaches to the skull and is left in place until treatment is completed,
later in the day. The head ring serves as a frame of reference, insuring that the
focused radiation beam(s) are aligned precisely with MRI images. The head ring is
applied using four small pins under local anesthesia. Sometimes, sedative IV
sedation may be used as well. No hair shaving or skin preparation is required.
Head frame placement will typically take about 15 minutes.
Once the head ring is securely placed, an MRI or a CT scan is performed. Images
are made of the inside of the entire head, usually at one- or two-millimeter
intervals. You will then be transported to an outpatient waiting area where you and
your family may relax until the treatment planning process is complete.
All necessary images, including CT and MRI scans are electronically transferred to
the treatment planning computer where they are quickly processed so that each
image has a front to back, side to side and vertical stereotactic coordinate
(representing the exact location of any point in the patient's head as it appears on
the computer screen) relative to the head ring. At least one of these scans will have
been obtained with the head ring in place. The head ring allows the exact mapping of
any point on the CT or MRI scan to its corresponding location within the head. This
enables the treating physicians to design complex treatment plans in "virtual
reality" on the planning computer, which can then be delivered accurately to the real
target within the head. Using image fusion software, any non-stereotactic scans can
be matched up with the one done with the frame in place, so that all images can be
used for planning. Dose planning then begins and continues until the neurosurgeon
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or neurotologist and radiation therapist are satisfied that an optimal plan has been
developed. A variety of options are available for choosing the best dose. The
fundamental goal is to deliver a radiation field that precisely conforms to the tumor
shape, while delivering a minimal dose of radiation to the surrounding brain and
other structures.
After dose planning is complete, double-checked and triple-checked, actual
treatment can begin. Whether LINAC unit or Gamma Knife, you will be asked to
lie down on the treatment table. The stereotactic head ring (still attached to your
head) will then be securely bolted to the end of the treatment table. Care will be
taken to ensure that you are comfortable in this position, since you may need to lie
still for some time. At this time, the actual treatment will be delivered. With
LINAC machines, you will see the radiosurgery unit rotating about your head.
With Gamma Knife machines, you will feel the table move into and out of the unit,
with little adjustments being made between “shots.” At all times, you will be able to
communicate with your physicians using microphones and you will be under video
observation.
After treatment has been completed, the head ring will be removed. After a short
observation period, you will be discharged. Radiosurgical procedures do not
usually require a hospital stay and most patients are able to return to work within a
day or two following treatment. Typical follow-up for acoustic neuroma patients
consists of MRI scans on a 6-month or annual basis.
Complications after radiation may include headaches, balance disturbance, hearing
loss, facial weakness, or facial numbness or discomfort. Because radiation can take
up to 18 to 24 months to have its full effect, these symptoms may develop over the
course of several months after radiation treatment. You should report any problems
you are having to your physician so that any appropriate treatment may be given.
FRACTIONATED TREATMENT
The process of fractionated treatment is similar to that of single-fraction treatment.
The most obvious difference is that treatment is carried out over a number of days
or weeks. If carried out over five or fewer doses, the treatment may be referred to
as “fractionated stereotactic radiosurgery,” while treatment of up to 30 days may
be referred to as “stereotactic radiotherapy.”
Another major difference is that it is impractical to use a head ring that is rigidly
affixed if the treatment is to be carried out over days or weeks. Typically, a
stereotactic facemask is used instead. A stereotactic facemask is made of
thermoplastic mesh and custom-fit to the contours of your face. The front and back
pieces of mesh are secured to a U-shaped frame that attaches to the treatment table
to hold the head still. This mask can be easily removed and replaced for each
treatment. Systems used for fractionated treatment typically allow previous MRIs
and CTs to be used, so it may not be necessary to undergo a scan with the
facemask in place.
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Since immobilization with a facemask is inherently not as precise as
immobilization with a head ring, other techniques may be used to insure accuracy
of the radiation treatment. For example, the CyberKnife and some other devices
take x-ray images of your head throughout the treatment, adjusting the position of
the radiation beam according to any slight movement.
MICROSURGERY FOR ACOUSTIC NEUROMA
Surgery for acoustic neuromas is typically done using an operative microscope, or,
occasionally, with the assistance of an endoscope. Decades ago, surgery for
acoustic neuroma carried very high risks, including a significant risk of death.
While the risks of major complications cannot be eliminated entirely, these risks
are now extremely low in the hands of experienced surgical teams using modern
equipment and techniques.
After safety, the primary goal of microsurgery is the preservation of function. The
highest risks are to the nerves that are inherently involved with the tumor; that is,
the facial nerve and the hearing and balance nerve. Both because facial nerve
problems are usually considered to be more incapacitating than unilateral hearing
loss and because satisfactory hearing results may be very difficult to obtain, facial
nerve function is generally prioritized over hearing outcome. Hearing preservation
is not always a realistic expectation, especially in cases of larger tumors. While
many patients are very dizzy after acoustic neuroma surgery due to the fact that
tumors are inherently part of the balance nerve, nearly all patients are able to
compensate significantly (and often completely), for the physiologic loss of
vestibular nerve function.
Three surgical approaches, translabyrinthine, retrosigmoid, or middle fossa, may
be used for resecting acoustic neuromas. The choice of which procedure depends
upon tumor size and configuration, hearing status, surgeons’ comfort level and
patient choice. Not all surgeons are comfortable with each approach.
Over the past few years, attention has turned to the option of partial tumor
resection. This is due to the availability of MRI for follow-up and to the presence
of stereotactic radiation as a treatment option for the residual tumor. Generally,
partial resection has the greatest role in the treatment of larger tumors, since total
resection of these tumors may result in high rates of facial nerve injury and other
problems. It should be clear however, that one surgeon’s definition of partial (or
subtotal) resection may be quite different than another’s. It may be very difficult to
estimate the amount of tumor left intraoperatively and a truly accurate assessment
can only be made by follow-up MRI.
For additional information regarding microsurgical treatment, please refer to the ANA
patient information booklet, Acoustic Neuroma Basic Overview.
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QUESTIONS FOR THE ACOUSTIC NEUROMA SURGEONS
If you have decided to have your acoustic neuroma surgically removed, you may
wish to ask some of the following questions of your surgeons. Be sure that you are
comfortable with the responses:
 How many acoustic tumors have you removed this month/this year and what
specific training in acoustic tumor surgery have you had?
 What is your total experience in operative cases of acoustic neuroma tumors
over what period of time?
 What microsurgical approach do you recommend for my tumor size, location,
age, health and level of hearing? How comfortable are you with each of the
surgical approaches?
 Do you feel that the facial nerve results or the hearing results are more
important in the long-term outcome? How do you achieve their preservation
and what are your success rates?
 Do you electrically monitor the facial nerve during surgery?
 In your experience, when leaving in small pieces of residual tumor on the
brainstem or facial nerve, does tumor growth usually stop?
 For a tumor the size and shape of mine, what have been your results with
respect to facial nerve function, both temporary and permanent?
 What is the likelihood that my remaining hearing will be preserved after this
surgery?
 Do you anticipate total tumor removal with a single operation? If not, what are
my follow-up options? Surgery? Radiation?
 Will this surgery be done by a team of physicians with more than one
specialty?
 What has been your rate of surgical complication with respect to stroke,
infection, bleeding, cerebral spinal fluid (CSF) leak and headache?
 When and how often should I schedule follow-up MRIs after treatment? Will
I get these MRIs for up to 10 years?
 Does your hospital have a neurological intensive care unit?
 About how many days will I be in the hospital?
 What follow-up care will I need?
 How much discomfort should I expect from headaches and from the incision
after this surgery?
 What do you do to minimize post-surgery headaches? NOTE: If you have a
history of headaches, discuss this with your physician.
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 Did you feel comfortable with the surgeon, the information shared, access to a
non-biased sample of his/her previous patients?
 All other things being equal, when can the surgery be scheduled?
NOTE: It is your right to get more than one opinion. Since acoustic neuromas are
benign and slow growing (usually developing over several years), surgery should
not be considered an emergency in most cases. Be cautious of anyone who tries to
convince you to rush into surgery before you have taken the time to make an
informed decision.
MICROSURGICAL TREATMENT: WHAT TO EXPECT
PREOPERATIVE COURSE
After you have elected to proceed with surgery, your procedure can be
scheduled. Prior to entering the hospital, which will usually be on the morning
of surgery, you will have to complete a preoperative evaluation. In addition to
meeting with your surgeons to again discuss the goals and risks of surgery, you
will need to undergo a variety of tests and obtain medical “clearance.” When
you meet with your surgeons, be sure to bring an MRI or CT studies (usually on
computer disc) that they do not already have in their possession.
If you have any medical problems, you will be asked to meet with your regular
doctor within a few weeks prior to surgery. Depending on specific medical
issues, you may need to see a cardiologist or other specialists. If you take
aspirin, Coumadin or any other medication that may affect blood clotting, you
will have to stop these medications prior to surgery. Aspirin is usually stopped
at least a week prior to surgery. You will obtain appropriate instructions
regarding this from your doctors.
A full “history and physical” will need to be completed prior to hospital
admission. This is a medical evaluation that becomes part of the hospital record.
It may be completed by your regular doctor, by your surgeons or members of
the surgical team, or by another internal medicine doctor identified by the
hospital. When your history and physical are carried out, be sure to have a list of
all regular medications, including dosages. It may be easier to bring the actual
medicine bottles. Don't forget to include pain medication and over-the-counter
drugs, such as antacids, vitamins and painkillers.
You will need to undergo a laboratory workup, including blood chemistry
studies, complete blood count, urinalysis, blood-clotting studies and blood
typing. It is very rare for an acoustic neuroma patient to need a blood transfusion
during surgery, but blood should be available if it is needed. Depending upon
your age and medical problems, chest X-ray and EKG may also be done.
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You will be instructed to have nothing to eat or drink after midnight the night before
surgery. Ask if it is OK to take a sleeping pill if you suspect you will have trouble
falling asleep. You may be instructed to take some regular medications, including
some blood pressure pills, with a sip of water on the morning of surgery.
THE MORNING OF SURGERY
The morning of surgery can be an anxious time for you and your family. You will
probably be required to arrive at the hospital very early in the morning. If family
members wish to see you before you go to the operating room, they should arrive
at the hospital the same time that you do, about two hours prior to the scheduled
start time for surgery. After checking into the hospital, you will be sent to the
preoperative area. Usually, you can be accompanied by one or two close relatives.
You can expect to meet your anesthesiologist at this time and you will have an IV
started. You may be given an IV medication to relax you, but you will be aware of
your surroundings and able to talk with your family and the nursing staff. It is
critical that the correct side of your surgery be confirmed and marked prior to
receiving sedative medication. Some people are more sensitive to this type of
medication than others, so the degree of relaxation varies.
You will be taken on a stretcher (a rolling cart) from the preoperative waiting to the
operating room. Upon entering the operating room, you will be awake and aware
of much activity. Usually, there will be the anesthesiologist, your surgeons, the
primary nurse and the audiologist who are present to monitor the 7th and 8th
cranial nerves and often, two or three other nurses. Do not be alarmed by all this
activity. After you are moved onto the operating room bed, a strap will be buckled
around you. It is simply a seat belt for the bed.
Once on the operating table, the anesthesiologist will use a stronger IV sedative
to put you into a deep sleep. After you are asleep, a urinary catheter and other
devices will be put in place. Your hair will be clipped (but not shaved) over the
operative site. Acoustic neuroma surgery requires placement of a breathing tube.
The type of anesthesia used is very deep and it is essentially impossible for you to
wake up during surgery or to have any recollection.
The length of the surgery is determined by the size of the tumor and the ease with
which it can be removed from all of the vital adjacent structures. During surgery
everything will be monitored continuously; your breathing, heart rate, blood
pressure, urine output, facial nerve and acoustic nerve functioning if needed and
other functions as well. One person is in charge of monitoring at all times. Even the
slightest change in your body function can be detected and the surgeon will be
informed if any problem arises.
NOTES FOR FAMILY MEMBERS
Surgery for an acoustic neuroma may take a number of hours, or even all day. The
family has a very tough job during major surgery. Rest assured that time passes
slower for the family than for anyone else. A waiting room can be a very lonely
place during this time. Don’t forget that you need to take care of yourself, too.
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Make yourself as comfortable as possible while you wait. Bring a picnic lunch, a
cooler with your favorite beverages and your own personal necessities if you will
be there for any extended period of time. Don’t forget something to read, maybe a
pillow and, since hospitals sometimes can be cool in the summer time, a sweater
may be a good idea. The better you take care of yourself, the better you can take
care of your family member having treatment.
As surgery progresses, reports are usually sent out to family members every few
hours. When the surgeons have removed the tumor and start to close the incision,
the family is customarily notified.
INTENSIVE CARE UNIT
When you wake up in the intensive care unit, you will have an IV in your arm, a
catheter in your bladder, a blood pressure monitor on your arm, an oxygen probe
on your finger and a large head dressing. You may have a large catheter inserted in
an artery on your wrist that is used to monitor blood pressure and to easily obtain
blood for laboratory testing. You will also be attached to various monitors.
You will be in a room close to the nurses' station so that you can be watched carefully
and all functions can be monitored. Do not be alarmed. This equipment is routine
in the intensive care unit and is there to help you recover as quickly as possible.
The main reason for intensive care is for careful monitoring of your neurological
function. Patients often complain that they cannot get any rest because they are so
closely monitored, but this care is what your surgeon intends. You will probably be
there for 24 to 48 hours.
DAY AFTER SURGERY
It is normal to have some level of nausea and dizziness following surgery. Most
patients will be asked to sit up on the side of the bed or in a comfortable chair the
first morning after surgery. Your urinary catheter should be removed at this time. A
decision will be made as to whether or not you are able to go to a regular hospital
room on the first day after surgery. If there is any question about your neurologic
function, or if there are any other medical issues, you will remain in intensive care
for another night. If you stay in the intensive care unit, you will continue to be
monitored very closely. Depending upon the size of your tumor or other factors, it
is likely that you will have a CT scan or MRI the day after surgery.
While you are in the intensive care unit, your family may visit for brief periods and
the number of visitors is usually limited. When your family first sees you, they will
notice some changes. Even when surgery goes quite well, patients often appear pale
and are attached to many monitors. Everyone needs to remember that all of the
equipment, tubes, dressings and other devices have a specific purpose in the overall
care of the patient. These devices will be removed at the appropriate time.
IN YOUR HOSPITAL ROOM
Your work begins when you return to a regular hospital room! At this point, you
should be free of most devices except your IV. The IV will probably be left in place
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until shortly before discharge. You can also expect to wear compressing air boots
while in bed. These are used to prevent blood clots from forming in the veins of your
legs. As your nausea subsides, your diet will be gradually advanced from ice chips
(usually in the ICU) to a liquid diet to a regular diet.
Most patients experience significant problems with balance after surgery. Since the
balance system may have been eliminated on the side of the tumor, it is important
that you stimulate your functional side to take over. The best way to accomplish
this is by activity. Start walking as soon as you can after surgery. You will have a
physical therapist to work with you during this time. Walking may be difficult at
first, but it is like exercising a sore muscle—the more you use it, the better it gets.
While the physical therapist will visit you at least on a daily basis, no one else can
force you to get out of bed at other times. You will have to motivate yourself. Most
patients decide preoperatively that they will be out of the hospital as quickly as
possible and they succeed—barring complications. A positive mental attitude
plays an important role in a speedy return home.
Get up and sit in a chair as soon as your surgeon permits. As soon as you can, you
should take meals while sitting in a chair and you should walk, with assistance at
first, at least two or three times each day as soon as the physical therapist tells you
it is safe to do so. Using the bathroom, as opposed to a bedpan, is an excellent
way to insure that you are out of bed as frequently as possible. Have your family
member bring warm, non-slip socks for you to use once you are out of the bed—
hospital floors can be cold.
Most patients are allowed to go home at the time they can walk the halls unaided
and hold down enough food to be off of all IV fluid. Prior to discharge, the
physical therapist will give clearance. Clearance for discharge may depend not
only upon how you are doing but also upon how much help you have at home and
even the number of stairs you need to climb at home.
If you want more information about balance issues, please refer to the ANA patient
information booklet, Improving Balance Associated with Acoustic Neuroma.
While acoustic neuroma surgery is not typically considered to be a particularly
painful operation, you can expect to have some discomfort or pain. You may suffer
incisional pain due to manipulation of the scalp and underlying muscles. You may
also experience headaches due to drainage of spinal fluid or small amounts of air in
the head. Eventually, fluid balances will be restored and air will be naturally
resorbed by the body. Pain medication will be provided to relieve your
discomfort. Remember, pain medication may cause constipation. Balance
problems, nausea and discomfort are considered routine parts of acoustic neuroma
treatment. You may also have new issues with hearing, but it is generally best to
focus on recovery at this time and to realize that hearing issues will be better
addressed later in the course of recovery. There are, of course, other risks to surgery
that may need to be addressed during the hospitalization.
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Due to the tumor's close involvement with the facial nerve, some patients
experience facial paralysis following surgery. This paralysis may be either temporary,
or, more rarely, permanent. If you have facial weakness after surgery, you should
speak with your surgeons and come to a clear understanding about their expectations
as to what you can expect in the future. While your surgeons may not be able to be
certain about the degree of recovery, they should have an idea about prognosis,
whether or not they expect the nerve to recover and over what time period.
In the event of loss of facial nerve function, precautions with your eye should be
taken. If you have a facial weakness, it may mean you will not be able to blink or
close your eye. This is actually the most important function of the facial nerve. It is
very important that the eye be artificially protected both from physical injury and
from drying out. Patients with facial weakness are at risk for corneal abrasions
and vision problems may result. Even if the facial weakness is temporary, these
vision problems may be permanent. For more information on facial issues, please
refer to the ANA patient information booklet, Facial Nerve and Acoustic Neuroma,
Possible Damage and Rehabilitation.
Eye drops, such as artificial tears, are prescribed if your eye is not producing natural
tears. Even if you have no perceptible facial weakness, your eye may be dry. If you
have trouble with corneal protection, ointment may be applied in the affected eye
and a plastic eye bubble placed over the eye. This precaution creates a moisture
chamber to protect the eye, which is especially important while you sleep, but which
also may be used as needed during the day.
If you do NOT have sensation in the face and eye, it is even more important that
your eye be closely supervised. If you have eye care while hospitalized, you will need
to continue care for a period afterward. It is important that you follow any specific
instructions about eye care from your surgeon or nurse. You may also need to see
an ophthalmologist on an ongoing basis. For more information on eye care, please
refer to the ANA patient information booklet, Eye Care After Acoustic Neuroma
Surgery.
Eating and drinking may present problems. Most patients find that, for a while, it
is advantageous to use a straw for beverages. You will not be able to move food
around in your mouth as easily as before. After eating, brush your teeth well on
both sides. Food tends to collect on the paralyzed side and if you do not brush or at
least rinse your mouth well, you may develop new cavities.
Depending on your surgeons’ preference, you may have a head dressing for several
days following surgery. There will be stitches and/or staples in your incision line
and you will probably be asked to return to your doctor's office for their removal.
If you go home with stitches or staples in place, keep that area clean. You may be
asked to keep the incision areas moist with an antibiotic ointment, which can be
purchased without a prescription from your pharmacy. Ask your surgeon whether
you may take a shower or even get the incision wet after you leave the hospital.
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If you have an abdominal incision for obtaining a fat graft, this incision may
contain a small tube, which will be removed a few days after surgery along with the
dressing. The care following removal of the tube is similar for the abdominal
incision as for the head incision. You may also have a spinal drain in place after
surgery. Be certain that you understand the purpose of this drain and how long it
will be left in place. In some hospitals, it may be necessary to remain in the ICU
for a more prolonged period if a drain is used.
CSF (cerebrospinal fluid) leaks happen occasionally. They can occur either
through the nose or from the incision. Such leaks appear as clear watery discharge.
Any leak should be reported to your doctor as soon as you notice it. You may
notice this leak as a salty taste in your mouth or a dripping feeling from your nose or
incision. If such a leak occurs after you leave the hospital, call your surgeon right
away. If left untreated, an infection which could lead to meningitis may follow. It is
always necessary to treat a spinal fluid leak.
Depending upon circumstances, this could be via a new dressing to apply pressure to
the wound, placement of a few new stitches, insertion of a spinal drain to divert fluid
and lower pressure, or re-operation.
Patients may be advised that they should not blow their nose after surgery until the
surgeon gives approval. If you sneeze, it should be done with the mouth open.
Additionally, you may be asked not to bear down too hard with bowel movements
(Valsalva maneuver). These extra precautions will ensure that spinal fluid is not
forced through the eustachian tube since the force of blowing the nose, sneezing, or
bearing down causes a temporary increase in spinal fluid pressure.
Remember that with an acoustic neuroma you are having brain surgery, not ear
surgery. Because of this, there is a low risk of major complications, including
strokes. Fortunately, with microsurgical techniques, stroke and other such
complications are very rare. Your surgeons work carefully to preserve all major
structures, including surrounding nerves and blood vessels. Experienced
caregivers will, of course, be prepared as best as possible to handle any unexpected
issues that might arise during your treatment.
GOING HOME
Upon leaving the hospital, you may have prescriptions to be filled and an
appointment made for a return checkup. Be sure you understand fully all
instructions given to you, especially about eye care and facial exercises, if necessary.
Ask your doctor or nurse if you have questions. Many patients are seen one to two
weeks after surgery and then as needed, depending upon your post-operative
recovery and any issues you may be experiencing. You should keep your doctors’
phone numbers at hand and you will be given instructions about specific reasons
that you should call. If there are any new, concerning problems that you think
might be an emergency you should call and ask for instructions.
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It is usual to experience a let-down at some point during your recovery. You may
feel well for a few days and later become depressed or tired. Many patients
experience this. If you think that you are having significant issues with mood or
depression, let your doctor know.
Headaches can be a problem after acoustic neuroma surgery. There are several
different medications and other therapies that can be used for treatment.
Treatment of these headaches may be different than treatment of headaches for
other causes. While postoperative headaches typically diminish before six
months, in some cases treatment must be continued for a longer period. For more
information on headaches, please refer to the ANA patient information booklet,
Headache Associated with Acoustic Neuroma Treatment.
Gradually work into your previous routine, but try not to overtire yourself. While
you probably will not require much direct care after discharge, it is likely that you
will not be able to perform regular household chores and other daily activities. As
you feel stronger, gradually take on more activities.
A walking program is an excellent way to regain your strength and does wonders to
help the balance system retrain itself. Start by walking shorter distances with
someone else. Then, gradually increase the length of your walk so that you are
walking at least one-mile on level ground daily.
Many people ask when they may resume driving their car. Resumption of this
activity is hard to predict. Usually a patient will know when driving feels safe.
One recommendation is that when they are able to turn their head quickly without
becoming disoriented, it is safe to drive. When you are ready to drive, probably
about two to four weeks after surgery, drive with someone else in the car at first.
For patients who are experiencing hearing issues, you should begin to consider
options after you have begun to make your recovery from surgery. For people who
feel that they are experiencing significant difficulty, speak with your doctors or
audiologist about hearing devices that create the sensation of hearing in your nonhearing ear. You can trial several of these devices before making any decision.
For more information on hearing devices, please refer to the ANA patient
information booklet, Hearing Loss Rehabilitation for Acoustic Neuroma Patients.
Much of the recovery phase is up to you. Most patients do return to whatever
work and personal activities they did before surgery. This effort takes determination, time and patience. Contact your health care professional during all phases of
your treatment and recovery as needed.
Patients who begin treatment with a positive mental attitude and who maintain that
attitude throughout the recovery period seem to have an easier and more complete
recovery.
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If possible, talk with a former patient about his or her experiences. Often it is
helpful to hear how others have coped with having had an acoustic neuroma.
Personal contact with other patients can be informative and comforting. Contact the
ANA national office for the Willing to Talk list which consists of ANA members
who are AN patients. They have agreed to share their contact information and
acoustic neuroma experience with acoustic neuroma patients.
There are many local Support Groups across the United States. For more
information about the group nearest you, refer to our website at
www.ANAUSA.org.
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WHAT IS THE ACOUSTIC NEUROMA ASSOCIATION (ANA)?
Acoustic Neuroma Association was founded in Carlisle, Pennsylvania, in 1981 by a
recovered patient, Virginia Fickel Ehr. She found no patient information or patient
support available when she had surgery for the removal of an acoustic neuroma in
1977. She resolved that future acoustic neuroma patients should have easy-to-read
medical material about their condition and support and comfort from each other.
With the help of her physician, she contacted eight other patients and formed the
organization.
The association is incorporated and is a 501(c)(3) non-profit organization. The
patient-focused, member organization now serves close to 5,000 members, is
governed by an all-patient Board of Directors and is operated by a small staff in
metropolitan Atlanta, GA.
ANA membership benefits include receipt of a quarterly newsletter, patient
information booklets, access to a network of local support groups, participation in our
webinars by leading medical professionals, access to a list of acoustic neuroma
patients willing to talk about their experience throughout the country, our website
Member Section and an invitation to a biennial symposium on acoustic neuroma.
Our exclusive website Member Section includes published medical journal articles on
acoustic neuroma, all of our patient information booklets, newsletters, webinars and
many symposium presentations. ANA also maintains an interactive website at
www.ANAUSA.org with an ANA Discussion Forum.
ANA is patient-founded, patient-focused and patient-funded. ANA recommends
treatment from a medical team with substantial acoustic neuroma experience.
Although the association cannot recommend specific doctors, medical centers or
medical procedures, guidelines for selecting a qualified medical professional can be
found at the ANA website, www.ANAUSA.org. Now available on our website is a
listing of medical resources. The physicians and organizations listed have selfreported data to meet criteria established by ANA for having substantial experience in
treating acoustic neuromas. The listings should NOT in any way be construed as an
endorsement or recommendation by ANA. It is every individual’s responsibility to
verify the qualifications, education and experience of any healthcare professional.
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ANA PUBLICATIONS
You may want to order other ANA publications. Address your request to the
following:
ANA
600 Peachtree Parkway, Suite 108
Cumming, GA 30041
Or phone us at 1-877-200-8211 or contact us by email at [email protected].
Be sure to enclose the proper amount, as well as your name, address and zip
code. Payment may also be made by check or by credit card using your Visa®
or Mastercard®. You may also order any of these publications on our website at
www.ANAUSA.org using your Visa® or Mastercard®.
Booklets
Acoustic Neuroma Basic Overview
Diagnosis: AN – What Next?
Eye Care after AN Surgery
Facial Nerve and AN: Possible Damage &
Rehabilitation
A Glimpse of the Brain
Headache Associated with AN Treatment
Improving Balance Associated with AN
Hearing Loss Rehabilitation for AN Patients
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© Acoustic Neuroma Association, February 2014
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