I have been puzzling over how to explain what we learned from the excellent Doctors Rigamonti and Kleinberg and their Physician Assistant Dawn Miller on Tuesday. The short of it is, they sent us home to “watch and wait.” So if you want to know the short version, that’s it, you can stop reading here.
The longer version, which the three-member team took 2.5 hours to explain to us, is more complicated, but of course with the same ending. My understanding of what we were told is below. I’m afraid it is not up to my usual standards of writing.
There are three treatments for acoustic neuromas; wait and watch, neurosurgery, and radiation. Before we saw our Johns Hopkins team we were ready for radiation and needed more information about singe versus multiple doses. We were definitely hoping to avoid surgery and not even considering, wait and watch. We had read lots of information, assumed the tumor was growing, since I am uncomfortably symptomatic, and could find no good reasons for waiting. We’re Americans, we’re “young” and healthy, I eat blueberries. I want to be “fixed”, the sooner the better.
After spending an hour with us, explaining our options and answering our questions, Dawn, the PA, ratted us out to Dr. Rigamonti. It’s her job. She scouts out the patients and fills in the doctor before he sees them. She spent a very generous amount of time with us and then privately explained to Dr. Rigamonti that he was going to have to be very clear and convincing with the two “informed” people in the next room - and he was.
Because I have only one MRI there is no way to know how much, and at what rate, the tumor is growing. Dr. McNasty had already told us that it could have been around for 5-8 years. Right now its size makes it either the largest of small or the smallest of medium tumors, very treatable. Much to my surprise, the fact that I was asymptomatic on Sept. 2 and symptomatic beginning on Sept. 3 is not proof of growth. It could be due to growth or any number of other factors.
Dr. Rigamonti explained the unwanted possible outcomes of surgery, if done by a skilled surgeon and if it all went well. Facial nerve damage, resulting in the inability to control the muscles on that side of the face, are under-reported and a serious possibility. Hearing loss in that ear is almost assured. Right now I have only lost 15-20% of my hearing and I must say, to me it is significant. Complications that happen in only a small percentage of cases may seem reassuring, unless they happen to me.
Radiosurgery, which is his specialty, is no easy fix. It often does not alleviate symptoms. DAMN! The unbalance, dizziness, and pressure in my head that accompanies each day with more or less volume, may not be relieved. Radiation can cause swelling in the period 3-6 weeks afterward, as well as additional difficulties. Hearing, which may initially be preserved, will almost certainly decline over time. If the tumor is not growing, radiation’s effectiveness is questionable.
Dr. Rigamonti gave us a copy of a paper that he, Dr. Kleinberg, and others have recently authored and will be presenting at an international conference. It reports their experience with 500 acoustic neuroma patients they treated between 1999 and 2007. It includes information from other N.A. studies and explains some of the questions and confusion that we were unable to tease out of our reading.
We were dismayed yet incredibly grateful that Dr. Rigamonti's honesty and recommendations will now be our path. We will probably do radiation if needed in the future, but we are convinced that we have to be more certain that it is needed. It seems rare that a doctor who is well known and respected in his field, would take such a generous amount of time to convince a prospective patient to wait and see.
For now, I am hoping to mitigate some of the symptoms with the help of vestibular physical therapy and other health care practices. For a linear, otherwise healthy person, not having a clear-cut line to a fix requires some adjustment. I’m busy adjusting, trying not to be too cranky about this, and appreciating all the help and support of our family and friends. Thank you so much.
With love,
Karen