fyi-radiaition

[Guest guest]

Copied this off the AN board;thought it may be of interest to others like myself

who are researching radiosurgery.

My wife’s experience may be useful for some who are considering the merits of

various treatments for large AN tumors.

My wife, n, age 52, was diagnosed with a 3.8 cm acoustic neuroma in April

1998. At that time, her symptoms were extremely mild: no hearing loss, only

the slightest balance problems, no vision problems, only a mild prickly

sensation in her right cheek, which at the time she was treating with

acupuncture. She only discovered her tumor after a clumsy hard fall during

martial arts practice, during which she banged her head. Her acupuncturist

suggested that she have a scan to see if there might be a slight concussion.

The scan quickly led to an MRI, which confirmed the existence of a 3.8 cm AN

that already had considerably distorted her brainstem from the midline. We

threw ourselves into AN research, using the internet and discussing the

treatment options with neurosurgeons and doctors. Our original neurosurgeon

gave us the idea that the AN might be treatable with radiation and that this

option might be better than surgery, for all the reasons mentioned on the

various AN support sites. We followed the discussion on the lists and soon

became aware of FSR as well. Because of insurance complications, we could not

take any action for about a year following the original diagnosis. During

that time, my wife continued to train in aikido and was generally quite active

in other areas of her life. She began to treat the AN with alternative

therapies: acupuncture, reiki, magnets, dietary adjustment, ONDEVIT, and a few

other modalities. The tumor appeared to be growing extremely slowly, or not

at all. Her symptoms remained minimal and certainly tolerable. Her life was

pretty much unchanged. Nevertheless, she wanted to proceed with allopathic

treatment, worried that things might get worse, as the tumor was already

extremely large. We sent her MRIs to Staten Island and were told that she was

a candidate for FSR. We also consulted with neurosurgeons from UCLA, who told

us that in their opinion the tumor was too large to treat with radiation.

They suggested that she have it removed. As FSR appeared a better option, we

chose it instead. We were encouraged in this choice by the report that FSR is

an outpatient treatment with typically little or no side effects. In

addition, we had read material that suggested that FSR was an effective

treatment even for large tumors, which typically cannot be treated by other

radiosurgical approaches, such as Gamma Knife. n, in particular, was

drawn to FSR after researching the information on the internet and following

the lively discussion of AN treatments on the list. She wanted a treatment

that would assure the least post-treatment complications and that would allow

her to maintain her active quality of life. Surgery seemed less likely to lead

to such results.

The results, however, were not quite what we expected.

We flew out to Staten Island from our home in California in March 1999. A few

hours after the first FSR treatment, n became quite nauseous. She felt

dizzy, weak, and had to throw up several times. After a restless night, we

called to see if this was a normal reaction, and we were told that she

probably had brought a flu with her from California. This was not the case.

We continued with the series of five treatments. After every treatment,

n was sick to her stomach for the entire following day. She usually

recovered by the next treatment day, but she fell ill again immediately after

the next treatment. After the fourth treatment, the nurse at Staten Island

gave us a prescription for anti-nausea medication and recommended that if

n wasn’t able to keep solid food in her stomach she might need to be

hospitalized. We soldiered through the treatment regimen nonetheless and flew

back to California. For the entire month of April, following her treatment,

n felt nauseous. Her dizziness slightly increased. Toward the end of

April, she suddenly developed double vision. She felt weak and out of

balance. We consulted Dr. Lederman, who told us that she had developed

hydrocephalus; the tumor had interfered with the normal circulation of fluid

in the brain. He urged us to have a ventricular shut inserted immediately.

We flew back to New York and had this done. Recovering from this operation

was difficult, and flying back to California was extremely strenuous for

n. We made it, but her symptoms did not decrease, as we had hoped.

Instead, they became progressively worse. She continued to feel nauseous, and

although her double vision went away, she began to experience more and more

problems with her balance. Before FSR treatment she had been able to practice

aikido, a martial art, nearly every day. Although she did not take falls

during practice, she could throw a partner quite well and generally handled

herself expertly on the mat. After FSR and her bout with hydrocephalus, she

could no longer continue martial arts at all. Nor could she keep up her more

so-called normal activities, such as her work as a psychotherapist, let alone

ferry our kids back and forth to the various after school events they were

involved with. By the end of June 1999, she no longer felt safe driving a

car. She was just too dizzy. A friend came to stay with us in the home that

summer, to help her out. We scheduled a followup MRI for August 1999 in

Staten Island and flew out to consult with the doctors. The MRI showed that

the tumor had responded to the FSR treatment, but no one could really say how

bad n’s symptoms might become before they got better or if they would get

better or what sort of timeline we might look forward to as we dealt with what

was becoming an increasing alarming situation. We left feeling unreassured

and uncertain. n remained committed to her treatment choice, however,

and decided to take Decadron, a steroid, which Dr. Lederman recommended as a

drug to deal with swelling of the brain tissues. She began to take eight

milligrams of Decadron every day, starting in September 1999. Her symptoms of

dizziness decreased slightly, temporarily, but then began to worsen again.

She could no longer take walks unassisted, and her vision began to deteriorate

as well. We were told at Staten Island to consider physical therapy and to

see an ophthalmologist, but since we chose FSR in the expectation that we

would avoid such post-treatment side effects, this suggestion did not seem

apt. We stayed the course, knowing that the side effects of radiation

typically manifest themselves most clearly seven to twelve months after

treatment. But it was becoming increasing nerve wracking to see n grow

worse. She had lost her physical independence and was now obliged to rely on

me or on friends to help her get around. We began to talk to neurologists and

other surgeons, as we didn’t want to fall into an emergency situation. By the

end of October 1999, n was again experiencing periodic bouts of double

vision. She staggered from wall to wall inside our house as she moved from

room to room. Outside the house, she was quite helpless unless someone

gripped her securely; one had to guide her as though she were an infirm

seventy-year-old in order for her to walk around. Her right leg was making

strange, jerky motions. In addition, she felt weak and was having sensations

of “hot lava” in her arms and legs. We consulted with a neurologist from

UCLA, who suggested immediate surgery. However, we still held on to the idea

that this might be a “healing crisis,” although each weak the crisis appeared

to get worse. I scheduled an appointment with a local ENT for the beginning

of November. He immediately booked her into surgery at a hospital in

Sacramento. We waited and sought another opinion, and we also sent copies of

n’s most recent November MRIs to Staten Island for review. This was

followed with an appointment at UCSF with Dr. Jackler. Dr. Jackler saw n

at the beginning of November, and, like the doctor in Sacramento, he

immediately scheduled her for surgery. We hesitated until hearing from Staten

Island: there, the word came back that n’s tumor had grown slightly or

swelled—increasing in size to the extent that it was compromising the midbrain

and threatening her life. So we decided to have the tumor debulked.

n went into the hospital at UCSF on November 17 for an eleven-hour

surgery. She came through it okay. The right side of her face is

paralyzed—we hope temporarily. Her eye needs the constant attention one hears

about after such procedures, but the pressure on her midbrain is gone. Since

the tumor had already received radiation, the neurosurgeons could safely

remove only 85 percent of the mass. The hopefully temporary paralysis of her

face is due to the double whammy on the nerve: first it was zapped with FSR,

then she went through an operation. She is very weak, and it will take some

time for her to recover, but we felt that we had no choice and that the

situation had become life threatening, due to the increasing pressure of the

tumor on the midbrain. With physical therapy, she ought to be able to regain

adequate mobility over time.

I mention this experience because I know there are and will be others out

there with large ANs near the midbrain who will be debating what treatment to

pursue: wait and watch, radiation, surgery. You always have better vision

with hindsight, as they say. This anecdote may be worthwhile, if you are in

this situation and considering what to do. I know that we would have

appreciated hearing this perspective as we were weighing our various choices.

-- Bruce Donehower

Jeanne wrote:

> ----------

> > Didn't know anyone was using GK for fractionating yet.

>

> Marcia--

>

> A while back a female posted to this list, if I remember correctly, that