In my consultation with Dr. Chang of Stanford, last Friday (7/29/10), he stated that one of the most difficult things for patients to understand is that the symptoms are not related to the size of the tumor. The other thing he said is that it should take approx. 2 years (that figure may be specific to me) to die completely, and if it dies too fast the symptoms get worse (controlled with steroids), but the point is that there is a correlation between the tumor death rate and the symptoms.
By the way, I've read that there is no universally accepted method of measuring our little beasts, and it makes sense. How do you measure a mushroom? But is there some consistency? One document I have states: Most authors advocate description of an AN's size in terms of the diameter of the CPA component of the tumor as measured in three axes: (1) parallel to the petrous ridge, (2) perpendicular to the petrous ridge, and (3) vertically. But I don't have a clear understanding of where the petrous ridge is (other than in my skull, of course). And the data on my MRI states 25 X 17 mm. So would that be 25 mm along the auditory nerve and 17 mm diameter at the mushroom "cap"? or the other way around? Does anyone have a more clear understanding of this?
I talked with Dr. Chang very briefly on the phone. He did indicate to me that the rate of death and the increased symptoms were related (somehow, not sure I really got it all) and that slower rate of death is more beneficial where symptoms are concerned. My question is, does their approach attempt to create a slower rate of death or is that just an individual response and thereâ€™s no control over it.
What he said to you about the size not being related to the symptoms. Can you explain that further? Is that because it depends on the location and density or how it is wrapped around nerves, etc.? I certainly can understand that, as with lots of things, itâ€™s all about location, location, location. What did he have to say about the location relative to your brain stem? I know we both share that concern.
As for your question about measurement, whew, I donâ€™t know. My longest measurement is what runs inside the auditory canal. I donâ€™t have a 3rd dimension measurement from my reports. I donâ€™t â€œthinkâ€ that all ANs even reach the CPA. Soâ€¦guess Iâ€™m no help on that, but interesting question, which sounds like one for your doctor.