Treatment tips for patients with Acoustic Neuroma



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

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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

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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.

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