Marion Donehowers Experience
with a Large Acoustic Neuroma, FSR,
Hydrocephalus, and Neurosurgery
Editor's note: Marion's complications after FSR, including the hydrocephalus, are identical to AN symptoms for pre-treatment patients with gigantic ANs; this story illustrates them very well.
Apr. 1998: Diagnosis
My wifes experience may be useful for some who are considering the merits of various treatments for large AN tumors.
My wife, Marion, 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, a martial art, 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. Marion, 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 promised the least complications and one 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.
March 1999: FSR Treatment
We flew out to Staten Island from our home in California in March 1999. A few hours after the first FSR treatment, Marion 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, Marion 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 Marion wasnt 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.
April 1999: hydrocephalus
For the entire month of April, following her treatment, Marion 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 Marion. 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 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 other 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.
Summer 1999: symptoms continue worsening
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 that summer, to assist Marion while I was at work. 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 Marions 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 increasingly alarming situation. We left feeling unreassured and uncertain.
Marion 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 seven to twelve months after treatment. But it was becoming increasing nerve wracking to see Marion 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 didnt want to fall into an emergency situation.
Fall 1999: symptoms become life-threatening
By the end of October 1999, Marion 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 Marion into surgery at a hospital in Sacramento. We waited and sought another opinion, and we also sent copies of Marions most recent November MRIs to Staten Island for review. This was followed with an appointment at UCSF with Dr. Jackler. Dr. Jackler saw Marion 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 Marions 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.
November 1999: AN surgery
Marion 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 paralyzedwe 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.
Winter 1999-2000: slow recovery
Since the craniotomy in November, Marions condition has improved slowly but steadily. At first she was very dizzy and weak, so much so that it was a daunting task even to use a walker to get across the room. For me, it was like watching a newborn baby become acquainted with balance and gravity. But the condition steadily improved. We had a physical therapist come to the house twice a week for about eight weeks. When he first showed up, Marion couldnt even get out of bed. At the end of that time, Marion had graduated from a walker, to a cane, to completely independent movement.
Now, she regularly goes for a two to three mile walk every day, takes care of household chores, and does yoga classes twice a week. She continues her acupuncture, curative eurythmy, and anthroposophical medications. When walking through the neighborhood, she takes along a friend for company, but she can keep her balance without the friends help. She is able to take care of herself at home while I am at work, and she has regained her old energy and zest. She still does not drive, because her eyesight on one side is not up to snuff.
Her facial paralysis is steadily improving, and her eyelid is beginning to move again. We still take pains to keep the eye lubricated, and we visit an eye doctor twice a month to make sure that the cornea is okay. The eye doctor and Dr. Jackler agree that the facial nerve is on the mend, and so we have not opted to use a gold weight to hold the eyelid closed. Ointment seems to be doing the trick. At night, I tape a piece of plastic over the eye so that it doesnt dry out. This seems to work well.
Marion has had no headaches and no post-surgical complications. She tapered off Decadron by the end of Dec. 1999. Except for some pain medication during the first week following surgery, she has taken no other allopathic pills or drugs. In general, to date, her quality of life has steadily improved; whereas after FSR her quality of life steadily deteriorated. We see improvements from week to week and continue to hope for the best.
March 2000: a retrospective
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.
Ironically, we know of another case where radiation treatment went awry. A friend of Marions was diagnosed with a small acoustic neuroma at about the same time Marion discovered hers. This friend, like Marion, opted for radiation treatment, in this case Proton Beam radiation at Loma Linda. A short time later, her tumor began to grow and swell. Her symptoms worsened rapidly, just as Marions had done. Just a few weeks ago she had surgery at UCSF to have the tumor removed.
Again, if the clock were turned back two years and I was just starting to research the effects of radiation treatment on large acoustic neuromas, I would certainly have appreciated knowing about these events. I cant say it would have changed my mind or Marions mind in regard to choosing FSR I think that our original reasons for choosing FSR were sound. Then again, I know that I would have greatly appreciated learning that there are patients whove had FSR or Proton Beam treatment but who nevertheless required surgery relatively quickly after radiation was done. And that in both cases, surgery came in response to life-threatening worsening of the symptoms.
Marion and I are happy to share experiences or opinions with anyone whos interested. Weve tried a variety of treatments for acoustic neuromas, as you can see, orthodox and unorthodox and were in touch with people whove done the same. Were learning as we go. You can contact me at email@example.com.
Bruce Donehower, PhD.
To Marion's entry in the Patient Directory
Last Edited: Wednesday, October 30, 2002