Large ANs:
unique risks, unique approaches

When the tumor is very large, a patient's treatment options are limited. 

Most radiosurgeons will not accept patients whose AN is larger than a certain cut-off.  Those that do face a risk that the post-radiosurgical swelling will result in life-threatening symptoms. Here is a patient story about this.

If at the time of diagnosis the AN is already large enough to be causing severe and life-threatening complications, then watch-and-waiting is certainly not an option.   In this case, there may not even be enough time to find an out-of-state surgeon:

Story 1. My husband did not have any AN symptoms, until an accident in which the back of the head was hit.  His hearing loss had occurred in early childhood.  With his profession, any physical or mental problem would have been noticeable to others; the job itself was very physically and mentally demanding.  But from the accident on there were changes which became progressively worse. Our doctor states strongly that the accident aggraved the tumor, but he also states that it would have been a matter of time (3 months) before the tumor would have manifested itself in the same way.  The day that the tumor was found, my husband was immediately hospitalized. It was very large, 6 cm, and we were given no choice but to have an immediate surgery... the first surgery was for placing a shunt due to the hydrocephalus, followed by the AN surgery a week later.

Now, the right side of his body is 30% weaker, though I'm told that there wasn't a stroke. He also lost the ability to use his right hand for small coordination; he can not write his name, or anything else, just scribbles. Tests revealed that he also has difficulty putting his thoughts into writing.  I believe that there is also an issue of being able to express emotions. There are also personality changes. I have yet to understand the whys of this.

Surgery for large ANs is also more risky.  The results can even be fatal.  For example, a 42-year old AN patient from New Jersey, married with three little children, died in the Spring of 1999 after AN surgery.  According to friends, he walked with difficulty and looked "off balance" several weeks before the surgery.  Within hours after surgery, bleeding within the brain started and could not be controlled. He became comatose and died four days later. Here is what his surgeon, Dr. Brackmann of the famous House Clinic in Los Angeles, wrote about this case [italics ours]:

Story 3. This patient was sent to us by air ambulance from the East Coast in a comatose condition. He had extremely large bilateral acoustic neuromas which were crossing in the midline. We knew that attempts to treat his tumour were associated with a high degree of risk and this was accepted by the family in a desperate attempt to salvage his life. He, of course, was in coma so the decision was made by his wife and brother-in-law... His initial surgery went well. We totally removed the larger of his acoustic tumours. He initially became more responsive but then developed a clot and had a deteriorating condition despite its removal.

Though patients of large ANs are at a disadvantage, successes are possible,both with radiosurgery and surgery.  For example, the AN Archive patient directory has an entry from Gary Washmon, whose 3.8 cm AN was treated by FSR successfully.  Most surgeries for large AN at the House Clinic are successful, too.  However, there is an alternative to both treatments, one that significantly reduces risks: partial removal (not subtotal or almost total, but only partial), eventually followed by radiation if necessary.

When only the inner part of the tumor is removed, there is MUCH less risk of damaging the tissues that surround the tumor. And if the left-over mass continues growing, it is then small enough do perform FSR safely...  This two-stage treatment is what was selected by a newscaster in Seattle whose case made local headlines [italics ours]:

Story 4. If you live in Seattle, you may know of Kathi Goertzen, a newscaster on a local TV channel. She had a meningioma (a similar tumor to AN). With a highly placed parent in the medical profession and the resources of KOMO TV, she researched and decided that surgery fit her situation best... Some tumor was purposely left to avoid damage to key nerves. The residual tumor was treated with Gamma Knife 2 months later.  She is back on the news every night and from appearances seems to be doing fine.

Others fall into such a two-stage treatment by accident [story with permission of patient]:

Story 5. My friend is a British surgery patient; he had a 5cm AN which was not diagnosed until he collapsed. He was very ill, but the hospital stabalised him, then put him on a general health improvement regime. He had to be sent home to recover prior to an emergency operation. Only when they judged him healthy enough did they operate. They had to terminate the operation part way through as he was becoming weak, and go back in a day or two later. Even then, they only performed a partial resection.  As a result, no damage was done, but at the expense of leaving some tumour in place and risking regrowth.  He recovered with no issues at all except deafness, and he looks "perfect" despite his earlier experience... but now is now experiencing regrowth.

He will be going to SIUH for FSR this time around.   He has the good fortune to be under the care of one of the best surgical teams in Europe and to have two senior members of the team who think that two-stage treatment may become the treatment of choice in such cases and who are prepared to say so in public. This, despite the fact that they cannot offer FSR in their hospital.

We'd like to see more awareness of such a combination approach for large ANs, which means that leading practitioners of AN treatments have to learn to give up some of their turf and "share" their patients, following the example of the British surgeons in Story 5. The fatal AN outcome described in story 2 , and the suffering described in Marion's story may have been avoided if the (micro-/radio-) surgeons did not try to address the whole problem with just one treatment modality, their own.

Last Edited: Wednesday, October 30, 2002