About Acoustic Neuromas and Val's in Particular
|What is an AN?
An Acoustic Neuroma is a non-cancerous tumor that originates in the small bony canal in the skull that carries the nerves between the inner ear and the brain, the internal auditory canal (IAC). They typically grow slowly, about 2mm per year. Although non-cancerous and apparently non-invasive, large tumors are fatal if untreated because of the extreme pressure they exert on the brainstem and cerebellum parts of the brain.
For an excellent, understandable intermediate overview of ANs, their treatment and post treatment effects, with clear illustrations, see: http://web.archive.org/web/20020204192103/http://www.neuro-otologic.com/documents/acoustic.htm
For a very complete and in-depth medical explanation of ANs, their symptoms, treatment options, and impact on quality of life, see: http://itsa.ucsf.edu/~rkj/IndexAN.html
|What does an AN look like?
For drawings of ANs of various stages, see: http://itsa.ucsf.edu/~rkj/Illustrations/ANillus.html
For illustrations of the locations and paths for surgical removal of ANs, see: Surgical Pathways
For illustrations of surgical removal of an AN, see: http://itsa.ucsf.edu/~rkj/Illustrations/ANSurg.html
|How has Val's AN affected her?
Val started experiencing some vertigo (dizzy spells) in January of 2001. That summer her friends and I started noticing that Val was not hearing as well as she had previously, but the hearing loss was unnoticed by Valerie herself. Throughout that year she had complained of fractured vision, where pieces of her visual field were missing.
Her dizzy spells increased in number and frequency through the summer, and while she sought some explanation for them among friends and in books, the answers were generally something like "symptoms of approaching menopause." By August the dizziness was so frequent, she ceased noting it in her journal. In January and February of 2002 the dizzy spells faded, to be replaced by intermittent, than continuous dysequilibrium - difficulty maintaining her balance, particularly while walking or after turning her head.
Visually, she began experiencing massive "floaters." She describes them as like looking through a field of semi-transparent crinkled fibers. She also began experiencing "brownouts" where so much of her visual field was missing because of enlarged blind spots* her brain could no longer fill in the missing information, and she would see almost nothing. The effect would fade after several seconds.
*For a quick online demonstration of your own blind spot, see: http://www.umds.ac.uk/physiology/daveb/brainday/blind.htm
By mid-January she had noticed rather significant hearing loss and distortion of sounds, and complained of a feeling of fullness in her left ear as if her middle ear were full of water. One practitioner said that a visual examination of the ear showed water behind the eardrum. So that was another diversion for a while while she tried to "remove the water" and find a reason for its existence.
During March, Val experienced a marked increase in the severity of all her symptoms. Finally, because of the increasing difficulty of conversations, I said "Would you please do something about that ear!" The next day, Thursday March 28th, she managed to get to an audiologist, and the test showed "severe" hearing loss in the left ear with zero speech discrimination in it. That same afternoon she went to a neurologically trained chiropractor. He suggested that it might be an Acoustic Neuroma, as had the audiologist.
What happened then?
A quick search on the Internet that evening brought up two particularly informative sites (top of this page), and a review of the symptoms showed that Val's matched almost exactly. The next morning she called an ear specialist for an appointment and was told it would be two to three weeks. When Steve, the Neuro-chiropractor, heard that he said "Let me see what I can do." He called back in a couple hours and said "You have an appointment at Missoula Open MRI* Tuesday (April 2nd) and an appointment with the doctor on Wednesday!"
Val of course made friends with the technicians, and they let her look at the MRI images. Tuesday evening when she came back from Missoula, she said that yes, there was a tumor, and she was surprised at how large it appeared to be after viewing the illustrations on the UCSF website. She didn't know how it could fit in her skull.
Resonance Imaging) Open MRI is a smaller machine, and
AN tumors are rated by their size, roughly their diameter in the brain cavity: "Small" if they are under 1.5cm, "Medium" from 1.5 to 2.5cm, and "Large" from 2.5 to 3.5cm.
Val's is 5cm or 2 inches, about the size of a large apricot. MRI Images
The neuro-otologist* (technical name for an ear surgeon) having studied
the MRI scans the evening before, said he was was rather astounded to see her alive with a
tumor that size, not to mention walking, talking, laughing, and driving to Missoula by
herself. After giving her lots of dexterity tests, he was shaking his head, still amazed,
and muttering about a "..once in a lifetime oppportunity to see one that
large." He made it clear that she should have immediate surgery, and started making
However, she really has A+ marks for doing as well as she is considering the size of the tumor. She is cheerful, positive and determined. The doctor said that patients with that attitude recover much faster and have fewer complications than those who are fearful or resigned.
|Having closely studied all the medical information from the UCSF website,
Val and I had made up an extensive list of questions about how he would do the operation:
what pathway into the brain? by himself or as a team to
reduce fatigue? how many has he done? etc. In fact we had printed all of the UCSF
information in its entirety and put it into an indexed binder which she took with her. The
doctor was impressed with the depth of her research, if perhaps a little taken aback by
some of her questions. But he was friendly and answered everything readily.
We were surprised to learn that St. Patrick's Hospital in Missoula is a significant regional center for AN operations, the AN team sees two to four AN patients a week and does twenty or thirty AN surgeries a year, drawing patients from throughout the Northwest. The neuro-surgeon knew most of the physicians who had written the articles for the UCSF website, having worked with them or studied under them. We both feel very good about both doctors and the facility and staff at St Patrick's, and were relieved to let go of our considerations about having to go to San Francisco or some other far-away medical center to find an experienced team..
|Check out the Updates page and Updates from Home for the latest news on Val's AN.
For more information go to Answers to questions people have asked.