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Directory of Acoustic Neuroma Myths

Below are some of the misconceptions prevalent in the Acoustic Neuroma community; we call them "myths". Here is an endorsement of this web page from Dr. Lindquist, Europe's foremost AN physician.  Also, here are some testimonials from patients who learned through their own experience that not all they hear is true. 

I. Myths about AN treatments
II. Myths about the effects of AN surgery
III. Myths about the effects of AN radiosurgery

Sometimes, the reasons for these myths are historical; it used to be true but no longer is. At other times, the reason is that doctors and patients speak different languages -- and misunderstandings arise.  In yet other cases, perhaps it's just wishful thinking on the part of patients...  Whatever the reasons for the myths, we hope that this directory will set the AN record straight.

Disclaimer: This page is created and maintained by AN patients, not physicians.  Please keep in mind that information about any treatment must be confirmed by an active provider of that treatment, in order to be sure it is accurate and up-to-date.  Please read here why.

I. Myths about AN treatments

• The panic myth: You can't go wrong if you remove your AN as soon as possible.

Acting out of panic has landed more newly diagnosed AN patients in rushed botched surgeries than anything else. Here is more.

• The cure myth: Surgery is the only known cure for an acoustic tumor.

Radiosurgerical treatments of AN have as much right to be called "a cure" as surgery.  Just think about it logically... Suppose someone has cancer, and they have radiotherapy, which kills the remaining cancer cells in the body. After this, the cancer never comes back. Can we say they are not cured, just because those cells were killed with radiation, rather than removed with surgery? I am sure you'd say they are cured!

So why is it any different for ANs? Why would killing the tumor cells, so they never grow again, and so the patient goes on to a normal life, not be considered a cure?

• The success myth: Successful treatments mean no further complications.

Patients need to know that every medical procedure has "goals". And we need to realize that for doctors, a medical procedure is considered successful as long as it meets its goals, even if the patient does not feel like a "success". For treating ANs, goals vary from doctor to doctor and from patient to patient. Even for the same patient, these goals can be quite different depending on the skill of the individual doctor and their type of treatment. Here is more.

• The threat myth: If you put off treatment, the tumor will kill you

ANs almost always grow very slowly; most patients have been living with one for years when diagnosed -- some for decades. Unless huge, or not quite huge but poorly located, ANs are not life-threatening. Before MRIs, there was often no way to detect them early, and diagnosis would not be certain until the symptoms got severe, or even till death.  Nowadays, practically all newly diagnosed patients can wait several months to study their options without significant risk.  Here is more.

• The single doctor myth: The correct treatment is best decided by the doctor and patient

Having just one doctor in that equation is not in your best interest. As countless patient testimonials show, it is not a good idea to go on the recommendations of one doctor, or even one type of doctor. Patients need to consult directly with the provider of each type of treatment. Have each one give you the statistics for their treatment, and discuss their expectations for your outcome. If applicable, have each one rebut the other's concerns - but do not let one doctor, or one type of specialists, act as the "decider". Here is more.

II. Myths about AN surgery

• The removal myth:  tumors needs to be removed.

For benign tumors such as ANs, the fact that the tumor is not actually removed does not matter at all, as long as it is not growing - that's what differentiates them from malignant tumors.  It does not spread to other parts of the body or emit toxins. It can stay there without damaging us if it were not to grow.

We also were not at all troubled by letting that "thing be in there." A prominent research oncologist friend told us that he could think of no problems at all leaving it there.

• The "gone" myth:  with surgery, you know that the tumor will be gone.

This is not guaranteed. Often, the surgeon is forced to leave behind parts of the tumor to avoid servious complications, trading off the current risk of surgical damage for the future risk of regrowth. Even total tumor removals have a 2-3% chance of regrowing, but for partial (incomplete) removals, chances are much higher, at 25-50%.   Here is more.

• The damage myth: The reason for surgery is to stop whatever damage the tumor is causing.

On the average, the complications of AN surgeries outweigh the complications that people experience from the AN itself. The idea with AN surgery is not just to stop current damage, but to prevent later and greater damage, which will occur if the tumor gets too large. Delaying treatment becomes a part of the risk-reward equation: it allows the tumor to grow (usually very slowly, if at all), but allows you to make a more informed treatment decision. If you find a better surgeon, or choose a non-surgical option as a result of taking that time, you usually more than make up for that extra risk.

• The preservation myth: Hearing and facial nerve preservation mean your hearing and facial control will stay the same.

It just means that the corresponding nerves have not been cut, literally.  It does not mean they still work properly. Here is more about hearing preservation and facial nerve preservation.

• The anaestheics myth: The memory/cognitive problems some suffer after AN surgery are the effects of anaesthetics.

Here is an anaesthesiologist's answer: "We use almost exactly the same anaesthetics on a range of operations of similar length on various parts of the body. Those who do not have brain surgery do not report the symptoms complained of by some AN patients. The conclusion must therefore be, that the problems are as a result of the invasive surgery."

No matter which of the specialists involved in AN surgery are to blame, it is agreed upon that there is a negative interaction between anaesthetics and invasive brain surgery that causes memory/cognitive problems for AN patients. The problems caused by anaesthetics are temporary:

ALL of the health professionals I came in contact with before and after my surgery warned me that the effects of the anaesthesia could be similar to a loss in IQ, but that over the course of six months to a year this loss should be reversed.

Unfortunately, there are also AN surgery patients with long-term cognitive problems, such as Melvyn.  For them, anaesthetics are not the cause of their problems. Here is more.

• The published statistics myth: you can know what to expect by reading the published statistics.

Unless those statistics where published by the same surgeon who will be operating on you, and unless they refer to the same approach as will be used on you, published statistics are almost meaningless. For example, with translab approach, there is no chance of retaining hearing, and hearing preservation statistics for the mid fossa approach do not apply.  For another example, your surgeon's experience greatly affects your expected outcome.  Statistics published by doctors with a lot more experience do not apply.

To be properly informed, patients must obtain each doctor's own statistics for AN treatments.  Federal laws require doctors to keep this information and to make it available to patients. 

III. Myths about the effects of AN radiosurgery

• The unproven myth: The radiation approach is unproven

Gamma Knife (GK) has been done since 1969.  At the BANA Annual General Meeting on June 10, 2000, famous neurosurgeon Dr. Lindquist said that more than 10,000 AN's have been treated by GK. Just as for surgery, the procedure has evolved over the past 30 years, as new technology and doctors' experience allows them to introduce improvements.

• The malignancy myth: Radiosurgery patients risk cancer later in life

All of us risk cancer in our lives.  But the risk for AN radiosurgery patients is no higher than for surgery patients.  Please read more.

• The difficulty myth: If the tumor regrows after radiosurgery, it will be much more difficult to remove at that point

The tumor tissues killed by radiosurgical treatment have texture that is different from that of live AN tissues.  A surgeon who is used to working with this texture should find it no more of a problem. However, an inexperienced radiosurgeon may not be used to this texture, and might find it harder to work with for this reason:

Several surgeons told us that removing an irradiated tumour was harder than removing a non irradiated one if you had to have this done... Dr. Williams advised us this was not the case, as did Dr. Lederman. A good surgeon should have no great difficulty.

The neurosurgeons I talked to said the surgery was different but not more difficult and that any surgeon that said it was more difficult didn't have enough experience.

Dr. Slattery at the HEC said that it would not be any harder. I was surprised as that was counter to what I had heard. 

Dr. Chang at Stanford performs both traditional surgery and radiosurgery (Cyberknife) on acoustic neuromas. He said it is false that it is more difficult to perform surgery after radiation.

Note that the same issue exists for repeat surgery, since the first surgery usually leaves behind scar tissue with different texture. It is well known that repeat surgeries can be more difficult because of this scar tissue.  In either case, seeking an experienced surgeon is the best way to prevent problems - or opt for a second radiotreatment instead.

• The only-once myth: You can only have radiosurgery once.

The following is from the web site of Dr. Ott, a reknowned neurosurgeon and radiosurgeon from San Diego:

"There are no reports of radiosurgery causing malignancy, and anecdotal reports of the difficulty of operated individuals previously treated by radiosurgery are unsubstantiated. Needless to say, the unusual complications of open surgery... infection, cerebrospinal fluid leak, hemorrhage etc. can be avoided. In the rare case of recurrent growth radiosurgery can be repeated."

Dr. Lindquist, a world authority on Gamma Knife, is also on record as recommending repeated radiosurgery when needed:

Dr Christer Lindquist is a Gamma Knife expert and neurosurgeon.  He currently works 2 days for the Cromwell Hospital in London and the rest of the week at the Karolinska in Sweden where the GK system was invented and perfected.  He gives either treatment according to the needs and wishes of the patient.  He has done the following:

Surgery followed by second surgery
Surgery followed by GK
GK followed by surgery
GK followed by second GK

• The age myth:  Radiation is for older people.

One look at the radiosurgery entries in our patient directory disproves this myth (some patients there are just teenagers, such as Grace). So why do we still hear it from many surgeons, including all the ones speaking at the ANA Symposium in June 2001?  The reasons are historical.

Old and frail AN patients have always been a segment of the AN population for whom surgery was particularly unappealing, for two reasons:

1. they have a much greater chance of not surviving surgery due to their age or frailty;'
2. if they survive, they have more difficulty recovering from surgery, and problems that are usually overcome as part of the recovery process can turn into permanent complications for them.

In view of these considerations, non-surgical alternatives have always been more attractive for this group of patients, even before technological advancements made them as safe as they are now.  Back then, radiosurgery was indeed reserved for this segment of AN patient population; it was said that "unless you are old and frail, surgery is the best option for you". With advances in radiosurgery over the last decade, this is no longer the case.

Radiosurgery is still particularly attractive for older people, which is what the surgeons at the ANA symposium were referring to -- but it is now the best option for many young patients too. At that symposium, when presented with a (hypothetical) case of a 24 year old rock star with AN, Dr. Day (a surgeon with the House Clinic in LA) recommended radiosurgery rather than surgery. This patient is special; there is a lot more at stake if she had facial or hearing problems after AN treatement than for most patients. Perhaps if she was 24 years old but not a star, the recommendation would have been different. But it's clearly not just a matter of age.

• The control myth: Radiation just halts, or controls, tumor growth

Radiation deactivates (kills) the tumor.  With the precision of state-of-the-art radiosurgery (thanks to modern imaging and computer technology), the chance of tumor recurrence after radiation therapy is no larger than after surgery.

• The 10-year myth: 10 years or more after FSR treatment, these patients will have side effects.

Radiation, unlike surgery, is more of a science than an art, and its effects are well studied. The only effect that may take a long time is malignancy, the myth right above.

• The small myth: Radiation is only for small tumors

Nowadays, radiosurgery centers treat patients with tumors up to 3cm, some even more.

• The vanishing myth: After radiosurgery, the tumor goes away.

The tumor will be deactivated (dead).  It will stop growing, and might shrink.   However, it will not disappear.

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Last Edited: Sunday, November 16, 2003