Treatment tips for patients with Acoustic Neuroma
Microsurgery and radiosurgery tips
An overview
Microsurgery for acoustic neuroma is a major medical undertaking. If you
and your doctors have decided this is the best way to handle acoustic
neuroma in your case, the following may give you some useful ideas. The
suggestions come from a number of surgery patients.
You might ask yourself in reading these tips why anyone would choose
microsurgery if there is a viable option. The answer lies in long term vs.
short term outcomes, and there you will need to research and discuss with
your doctors to your own satisfaction. Many patients feel microsurgery
offers a more definitive way of handling acoustic neuroma with lower risk
of long term recurrence or other possible complications from radiosurgery.
Others feel just as strongly that the opposite is true. We believe there
is no one perfect treatment that fits all situations.
Some thoughts for all patients
Whatever approach you choose to handle acoustic neuroma, try to remain
positive. You are not going to make a wrong or bad decision on this. You
are making the best decision for your medical situation in consultation
with your doctors.
Yes, you have a brain tumor. But it is a benign brain tumor. Do not forget
how much worse it could be. Visualize clearly for yourself that you are
going not only to survive this, but you are going to overcome it and move
on with your life.
Facing a major life event and medical health threat like acoustic neuroma
and its consequences can be devastating. But it is also an opportunity for
tremendous personal growth. It is a hard thing to accept that our bodies
will ultimately fail, and acoustic neuroma is a rude and brassy wake up
call for many patients who have never had significant problems before.
Remember that you did not cause or choose acoustic neuroma. Do not blame
yourself. There is no basis for guilt on top of everything else, and guilt
is counterproductive. Rather, focus on identifying the best treatment for
you, the best doctors to deliver that treatment, and then visualize and
achieve a positive outcome for yourself.
Ideas for pre-microsurgery
While most of these tips apply to microsurgery, some of them may be
valuable for preparation for radiosurgery as well.
Plan transportation to and from treatment
Take care of all medical insurance, physical evaluations, and
pre-admissions steps
Make arrangements with work to be off for as long as anticipated
Give children and spouses and friends reassurance (they may be stressed)
Get a digital thermometer to monitor temperature post-surgery
Get a digital blood pressure device to track blood pressure after
surgery
Arrange for family care or assistance for a few days after you come home
Get comfortable pajamas, slippers, etc., and have clothes and shoes you
don't have to struggle with or bend over or to pull over your head
Find your remote controls for TVs and VCRs
Put phones close to where you are sleep or relax
Follow dietary requirements; do not eat after the time you are asked not
to eat
Be careful of aspirin or anti-coagulants -- these are normally
restricted a certain time before surgery
Fill out organ donor papers and so forth; it is not a bad idea to have
things prepared if only for peace of mind; you may not be any more at
risk of death from surgery than from driving to get to the surgery
You will probably take several kinds of medication after surgery;
dispensers marked by day can help you organize multiple medications and
you might want to keep a log of what you took in case you forget
Keep a log of temperature and blood pressure, and moods, thoughts,
dreams, etc.
Have extra pillows or supports available; putting your head below a
certain level is probably not advised
Haircuts: many patients get a short haircut before the surgery, then it
all grows back in a uniform fashion
The day of the surgery, don't be surprised if things take on an unreal
quality and your family or friends feel very worried; reassure them and
yourself
Visualize a good outcome and the happiness of overcoming this challenge
Accept the things you cannot control and trust in the best outcome based
on your choice of the best physicians and treatment for your situation
Do things that relax and sooth you
If any details are wearing on your mind, handle them
While leaning on your friends and family, remember they may be more
afraid than you
Don't be afraid to cry, worry, stress and be active in addressing your
emotions in ways appropriate to you
If you're somewhat depressed, it's a depressing circumstance you find
yourself in; handle the depression and stay on top of it; get help if
you need it
Some things are helpful, like exercise or recreation; other things are
not, like too much alcohol
Remember: you have done your homework and found great doctors; think
positively
Ideas for post-surgery in the hospital
For pajamas in hospital and first few weeks -- need large head opening due
to bandages and tender scalp
Get slippers that you can put on without having to bend over to tie
strings
When you first walk after surgery, you will have nurses, spouses or
friends at your side; almost hourly after surgery you will see
improvement
While immediately post-op in the hospital, you will probably have
inflatable cuffs around your legs that will inflate frequently to force
blood out of your legs; this is important and is to help prevent blood
clots and improve circulation; move your legs and feet as much as you
can; for the same reason, if you are asked to wear supportive nylons
after the surgery, do it
Have an advocate (like your spouse) stay with you in the hospital to
double check medications and run interference for you and provide
support (some hospitals allow this if you are not in ICU; other
hospitals may not, but it never hurts to ask)
Nights in the hospital are not necessarily restful; you may be
interrupted by someone bringing water, taking temperature, bringing a
pill or administering IV medication, taking blood samples, taking blood
pressure, etc. -- speak up for your right to sleep
Right after surgery you may see your blood pressure go high; this is a
physical reaction to the surgery; relax and take your pain medication,
since when you medicate the pain, you also tend to help lower the blood
pressure
Ideas for post-surgery at home
Have Tylenol or pain killers in various locations (assuming no young
kids might get into them) (do not take any medications, even
over-the-counter, that are not okayed by your doctor)
Have water or juices in all the rooms/locations where you might be;
plastic bottles with straws can be helpful if head movement hurts;
neck is might be stiff for a while due to surgery position
Drink lots of water, juices, etc.; helps flush the drugs out of the
system and promotes healing
Follow a good regimen of vitamins; B-complex reportedly helps nerve
healing/regeneration; E and C help healing, etc.; however, don't take
too many vitamins -- some can be toxic at high dosages and some can
affect coagulation if that is an issue -- talk to your doctors
Eat a good balanced diet; get lots of fiber (bran muffins are good);
lots of fruit (you want to avoid constipation post-surgery and some of
the drugs you take may be constipating); lots of vegetables; give your
body plenty of healthy food so it can rebuild tissues
Avoid aspirin or other anticoagulants until the doctor says okay
(non-aspirin pain killers should be fine -- your doctor will let you
know)
Have a walking stick at home (like you might use for hiking) just in
case balance is an issue for a while -- and it probably will be; balance
comes back fast, but the first week or so you may be shaky; odds are you
won't need a walking stick, but it's handy in case
Keep night lights or flashlights in any rooms where you might have to
walk at night in dark; balance in the dark will be weak at first
Your brain will need to relearn balance; what your eyes are telling you
may not agree with what your "ear" is saying; practice feeling balance
with your feet and the rest of your body and seeing it with your eyes;
even if balance is poor right after surgery, keep working on it and it will
come back quickly -- lots of walking with head movements helps
You should walk and move as much as you can based on doctor's advice;
promotes healing, helps restore balance, regain confidence, etc.
Things may spin a lot, a little or not at all after surgery; this should
pass in about a week
You might have facial weakness or problems closing affected eye; that
should pass as long as the nerves came through okay -- temporary facial
weakness is common; permanent is not with the best surgeons; you may
need to ask your doctor about medication (such as steroids) to reduce
swelling which may be pressing on the facial nerve
Emotions: you may experience elation and then depression post-surgery,
especially as you come off any steroids; be reassured that these are
typical responses to a major surgery and the depression appears to be
related to steroids; not everyone experiences this, but if you do it
will pass in a day or two; have support available if you think you might
need it
Balance and vision are tied together, therefore you may have blurry
vision for a while
When your pressure bandage is taken off, you will not look very pretty;
whatever hair you didn't cut off before will be matted down; the scar
will be visible and can be of variable length: keep in mind that your
regrowing hair will cover most of the scar, which will fade anyway, and
maybe all of it; once you can shampoo your hair again, you will start
looking normal (your doctor will tell you when you can start shampooing
again; baby shampoo is probably a good choice to start with
Staples are usually used instead of stitches; when you have your staples
removed you may be anxious that this will hurt or that the wound will
pull apart; very few people report pain with this, and the staples are
not removed until sufficient healing has taken place
After surgery, remember to breathe as deeply as you can, as frequently
as you can; your nurses may give you tools to help make sure you do
this; this is important and helps you get needed oxygen for your body
plus helps keep you from getting fluid build up in your lungs
Monitor temperature carefully and frequently after surgery and keep a
log; it is normal for temperature to go up in certain parts of the day,
but a high temperature could be a sign of infection that should be
treated immediately
Don't plan on driving for a about six weeks (check with your doctor)
You will have days when you feel good and you will do too much; the next
day, you'll feel tired and need to nap; this is normal; listen to your
doctor and to your body; keep walking and moving and recover balance,
but don't overdo it
If your body wants sleep, sleep; sleep is important to healing
Your spouse or companion might plan to spend a few days on the couch;
some people experience the need for no movement in bed while the balance
faculty is repairing itself
You may have a sore throat from the breathing tube but for most people
this is mild or does not occur; if it does, ice chips, cool drinks, etc.
help
A few patients report a sensitivity to smells (solvents, perfume); if
this happens to you let others in the household know of your needs
You may experience slight or significant short term memory loss; this
should improve rapidly
Steroids may have side effects, but you may need them to reduce swelling
and enable better nerve healing
Most doctors agree that nerve healing post surgery can take place up to
around 2 years after microsurgery; most of that healing happens early
on, but improvement will continue each month
As you go off steroids, you may find yourself depressed; fortunately, if
this effect does occur, it seems to last only a couple days; if you are
prone to depression or are concerned about it, be prepared for this
possibility and have help available if needed
Insomnia can be a problem; some use herbal medicine and found that a
Passionflower/Chamomile pill helps; you may like teas like Sleepytime
(Celestial Seasonings); of course your doctor may prescribe medication
Stomach -- between the steroids and Motrin and other stuff you'll be
taking you'll need to have a few bottles Maalox on hand and milk and
crackers or other such
You may gain weight: steroid may make you beef up; still, it's not a
time to diet; give your body lots of nutrition; when you can, walk and
exercise (check with your doctor) and that will help you overall and
with weight if that is a problem; one patient says chromium piccolinate
may help level blood sugar -- but check with your doctor
Ice packs/heat packs: depending on what hurts and what helps; ask your
doctor or the nurse; your neck is liable to be stiff and uncomfortable
at first
Humidifier in bedroom; you may find the extra moisture helps you if your
house is very dry
Hair loss: if this happens, see your dermatologist; sometimes special
OTC shampoos (DHS Clear and DHS Zinc), a prescription lotion for the
scalp(like cyclocort) and taking 900 mcg of Biotin (the 'hair and nail
vitamin'); talk to your doctors first
Energy level: it will be low at first, but will come back quickly for
most; one patient took Gingko biloba/ginseng and found that helpful;
listen to your body; get lots of rest and food
Hair again: men and women may want to consider scarves or hats to keep
warm in cold weather; hair does take a while to grow back; it does seem
to be generally agreed that it is important that the surgical wound be
exposed to the air when that becomes appropriate to aid in the healing
process
Use eye drops/ eye salve (like Lacrilube or Aquasite by Cibavision) as
needed based on your doctor's advice; it is not uncommon to have
temporary lubrication problems after surgery; if this occurs, in most
cases this seems to improve to a satisfactory level with time; but many
patients report long term that, while their affected eye lubricates
adequately, it may not tear as much (as when crying at sad movies); it
is important to keep your eye lubricated and discuss any problems with
your doctor
You may be going through many changes for the first years after
treatment. After microsurgery, nerve healing and improvement can occur
up through the first 2 years or more, though the majority of healing
occurs quickly.
Sometimes tinnitus departs for awhile right after treatment, but it is
quite likely to return
It is quite likely you will lose some or all your hearing in the
affected ear if you are choosing microsurgery; it is certain you will
lose all the hearing in the affected ear with certain approaches, like
translabyrinthine, which in the process of surgery removes the anatomy
necessary for hearing in that ear; with other approaches, e.g.,
suboccipital or retrosigmoid, some hearing preservation may be possible;
losing hearing can be a real loss but you will deal with it; there is
also a significant chance of losing hearing through radiosurgery, though
the effect is likely to occur weeks or months after treatment; be
psychologically prepared for this loss; know that most patients do not
find unilateral (one-sided) hearing loss to be of overwhelming
significance in their lives
If you have lost some or all hearing, be careful as you adjust to the
new sensory situation; you will not hear cars or people as well on the
affected side; location of sounds becomes difficult (you lose the
ability to "triangulate"); conversations in noisy places or with people
talking softly on your affected side become hard to manage; use
strategies like walking with people on your better hearing side and be
frank with people about the problem.
If your tinnitus changes significantly post-surgery, let your doctor
know; in some cases this might be due to tissue swelling, and steroids
or other anti-inflammatories might be effective in reducing swelling and
thus helping the tinnitus
If the tinnitus is bad, look for tinnitus habituation programs in the
area near you; they don't make the tinnitus go away, but they help you
learn to refocus your attention so you consciously do not notice the
tinnitus most of the time
For tinnitus: noise makers (soft rain sounds, surf, etc.) can be
purchased and may help you, especially when going to sleep; leaving a
radio on softly at night might help too; if this bothers your spouse or
partner, see about using a Walkman or similar headset device so only you
hear the sounds
You may experience small or large areas of scalp numbness due to
pressure from the apparatus to hold your head stable during surgery
and/or from the pressure bandage placed on your head after surgery; in
most cases this will go away
How fast might scalp numbness go away? one surgeon gave a regeneration
or healing rate of about 1 mm per day, or about an inch a month
Okay, if the nerves that give the scalp feeling can heal, why not the
nerves for the face, or the hearing? a very general answer might be that
the peripheral nerves are different in this capability than cranial
nerves; it is also stated by many physicians that motor nerves are
hardier than sensory nerves; that may explain why rates of facial nerve
function preservation are greater than hearing preservation
Some get got hot and cold spells at night, possibly from steroids; keep
ice water by your bed at night and thin blankets you can layer as you
get hot and cold
Be alert to cerebro-spinal fluid (CSF) leaks. This could be clear liquid
that drips out your nose or from the surgical wound. It's liable to heal
up on its own, but it could result in meningitis in worst case. Bring
anything suspicious to the attention of your doctor. They can test
easily whether it is CSF or not.
Challenge your balance perceptions as much as you can. Walk, balance,
turn your head all directions, etc. If your balance is super bad,
consider a well-trained vestibular therapist.
Don't put your head down for awhile after surgery; you don't want to
increase that cranial pressure for awhile.
Get stocked up on all the good movies you've wanted to watch or have
someone available to rent them for you. You may not feel like reading at
first.
A radio nearby can be a pleasant distraction from the pain or discomfort
post-surgery.
Short-term memory is affected for a lot of people. You may not remember
some things, little or major, at first. Practice and challenge yourself.
For quite some time after surgery you may periodically feel strong
emotions about the event. This is a normal part of healing and
processing the event. You have survived a major trauma.
Don't forget to thank your doctors. While you were out they spent quite
a few hours sweating bullets over you. They're human just like you.
Ideas for radiosurgery
Radiosurgery patients can feel satisfaction that at this stage, and
hopefully permanently, they have avoided the stress, trauma, and risks of
microsurgery. Some general tips that may be of use:
Before treatment
Plan transportation to and from radiosurgery
For fractionated protocols, make arrangements for work and if necessary,
transportation and lodging
Take care of all medical insurance, physical evaluations, and
pre-admissions steps
Follow any dietary requirements
Give kids and spouses and friends reassurance
Visualize a good outcome and the happiness of overcoming this challenge
Accept the things you cannot control and trust in the best outcome based
on your choice of the best physicians and treatment for your situation
Do things that relax and sooth you
If any details are wearing on your mind, handle them
While leaning on your friends and family, remember they may be more
afraid than you
Don't be afraid to cry, worry, stress and be active in addressing your
emotions in ways appropriate to you
If you're somewhat depressed, it's a depressing circumstance you find
yourself in; handle the depression and stay on top of it; get help if
you need it
Some things are helpful, like exercise or recreation; other things are
not, like too much alcohol
The day of the treatment, don't be surprised if things take on an
intense air; reassure your family and yourself
Remember: you have done your homework and found great doctors
top of page | site table of contents | SANG home page
During treatment
Some patients report minor problems with the punctures where the frame
attaches to the head (not all procedures use this process); this is a
minor wound but be sure to take care of it
For some procedures you may be kept overnight to be sure you will not
experience any acute problems, such as edema
For other procedures, you may be free to go after each treatment
Some patients report fatigue or feeling "off" a little during some steps
of the process (others report immediately having a sense of feeling
better)
In some procedures the frame affixed to your head must be worn for the
duration of the treatment, even if this is for several days or more;
this is not a major problem though according to most patients
top of page | site table of contents | SANG home page
After treatment
Have Tylenol or pain killers available if you are troubled by headaches
Follow a good regimen of vitamins; B-complex reportedly helps nerve
healing/regeneration; E and C help healing, etc.; however, don't take
too many vitamins -- some can be toxic at high dosages; vitamins may be
helpful in minimizing or helping heal from any incidental damage to
healthy tissues
Eat a good balanced diet
For radiosurgery, the effects tend to be latent. Your tumor will be
monitored for changes, and you may experience delayed effects of facial
numbness, hearing loss, or other changes weeks, months, or years after
treatment
Emotions: you may experience various emotions, such as relief to have
taken the major step to handle acoustic neuroma; some patients report
that they feel better quickly after radiation
Some patients recommend the practice of meditation, like TM or Kriya;
others find peaceful walking helpful; others use Tai Chi and other
physical meditations
Although radiosurgery has initial hearing preservation rates better than
microsurgery, over longer periods of time this advantage is not as
strong; while being hopeful that your hearing will be retained, be
prepared for the possibility that it may decrease over time or be lost;
your doctor can help you understand the odds on this
If you have symptoms occur months or even years after treatment, do not
forget that some effects of radiation are latent and may take some time
to manifest; therefore, if something changes later, do not forget to
check whether you may be experiencing a delayed effect of your treatment
If you are experiencing any eye lubrication problems, use eye drops/ eye
salve (like Lacrilube or Aquasite by Cibavision) as needed based on your
doctor's advice
If your tinnitus changes significantly post-treatment, let your doctor
know; in some cases this might be due to tissue swelling, and steroids
or other anti-inflammatories might be effective in reducing swelling and
thus helping the tinnitus
Unfortunately, as with microsurgery, if you had tinnitus before
treatment, odds are you will still have it after treatment
If the tinnitus is bad, look for tinnitus habituation programs in the
area near you; they don't make the tinnitus go away, but they help you
learn to refocus your attention so you consciously do not notice the
tinnitus most of the time
For tinnitus: noise makers (soft rain sounds, surf, etc.) can be
purchased and may help you, especially when going to sleep; leaving a
radio on softly at night might help too; if this bothers your spouse or
partner, see about using a Walkman or similar headset device so only you
hear the sounds
You may experience some scalp numbness due to pressure from the screws
affixing the frame to your head (if that process is used); this should
go away
If you experience any balance issues (either before or after treatment),
challenge your balance perceptions as much as you can. Walk, balance,
turn your head all directions, etc. If your balance is super bad,
consider a well-trained vestibular therapist.
Don't forget to thank your doctors.