Update:
I went to see a guru at Duke today, a neurosurgeon. He thinks my 1cm tumor is NOT the cause of my symptoms as my symptoms are not consistent with AN symptoms. AN's typically present with hearing loss as the main issue and balance etc as minor/secondary issues. Also, AN symptoms should be progressive, not fluctuating over a period of a decade or so. My symptoms are mainly balance issues, my hearing isn't that bad, and they come and go, and have come and gone, for years. Also, he thinks my tumor is too small to be the likely cause of my symptoms. He referred me to a high-level ENT at Duke to explore inner ear disorders like some type of endolymphatic hydrops. This is what I thought all along, but was told it wasn't the case, by the people I saw in Charlotte. So, Without me even mentioning my theory about all of this, this Dr at Duke came up with the same theories about MY problem as I did. The other guys were all going with percentages, NOT what my symptoms/history had shown.
Score one for Duke!
Next, the tumor itself and what to do about it. He has seen enough slow growth and no growth tumors to think that observation is not a bad idea for me. He thinks, as I have all along, that finding the tumor was an accident as a result of investigating my other problem, some type of inner ear disorder and that letting the tumor go for 10 years will not cause any worsening of my symptoms. He thinks it is entirely appropriate to engage in a course (watch and wait) that will result in me being 57 years old and having a 1.5 cm tumor. That is if it grows at all. Even if it progresses faster than I would like, say it needs to come out in 5 years, he thinks that is 5 years of healthy living with no risk of surgical side-effects. Again, this is what I was thinking all along and the Dr down hear made me think that the longer I waited, the worse off I would be.
Score 2 for Duke!
It's not that the people I have seen down here are incompetent, it's just that they can't have the experience that the people at Duke have. The local Dr's looked at the likelihood of this and that and decided what I had and needed. All three of them were wrong. The Dr at Duke looked at what I was presenting with, and what his EXPERIENCE showed him, and what would happen in the interim periods between MRI's.
There is just no substitute for experience and a Dr who is in charge of skull-base tumors, at a brain tumor center, at a world renowned medical center, is just going to have more experience in these matters. He's "been there, done that" many times and has a better ability to navigate his way through these situations.
