Hi Annie,
Thank you for sharing that you were going through a "gut check" today. I thought it was worthwhile in my last post to at least raise the issue that Dr. Jackler, while a great AN surgeon, really is not a great source of information on radiosurgery as an option. ( by the way he gave me the same "book" of his An publications, very sobering reading)In essence his response will always duplicate what you get from a doctor from HEI. To use an investing analogy, people who own 20 mutual funds that are all classified as containing large growth stocks think they're diversified, but really probably own the same stocks in each fund. Similarly, 20 neurotologists like jackler or the docs at HEI will all give the same answer re: surgery vs. radiosurgery. That being said, in raising an issue like that I am very sensitive that it doesn't come across that I am ever challenging anyone's decision. There is never a right or wrong in this, just what each individual feels is the best choice for them.
However, I am very glad to hear that you are set up to see Dr. Chang. I would echo Bruce's sentiments that he will provide you a very accurate view of radiosurgery as an option based on your circumstances. Whichever way you end up deciding to go, you can truly say you heard both sides after that visit. Most folks who post on this board would probably say they have a lot of confidence in the docs who finally treated them and I am certainly no different in my view of Dr. Chang. He is one of the few that actually does both options equally and will actually answer the question " what would you do if this was you or a member of your family?" In fact, if you look in the archives of this forum for posts from "CC" you will see her recap of an e-mail exchange with Dr. Chang and the questions she asked which may be of interest. ( Since Phyl is now a high paid web policewoman for this site, maybe she knows a quick way to find it
, just kidding Phyl)
Regarding your questions in the previous post, the most complete explanation of my decision rationale is probably found in my story posted on the CPSG site. In short, while not a clinician, I have been in the medical supply business dealing solely with hospitals for over 25 years and I understand the risks of open surgery, especially a major one like a craniotomy, so yes, if that was avoidable it was a factor for me. More importantly, I weighed the probable outcomes based on all the studies I could find and made my decision based , in descending order, on tumor control , facial nerve preservation, possible treatment complications & hearing preservation. In terms of the latter, my hearing today almost 6 years out is unchanged from what it was before treatment. I think the facial nerve preservation issue was probably the biggest differentiator and I think the stats clearly favor radiosurgery in this area. Actually, what I remember doing was scrolling through this web site and checking how many references to facial palsy / dry eye were made by surgery and radiosurgery posters. The sample would probably be more realistic today than when I did it since there is a larger universe of radiosurgery posters active. So those were some of the things I thought about in my process.
So good luck to you in your meeting with Dr. Chang and , if you remember, tell him I said "hi". Either way you go, please know you are in extremely capable hands as both he and Dr. Jackler are very much world class clinicians. ironically, if you do opt to do the surgery , you may have Dr. Chang in the OR as he is one of the neurosurgeons who partner sometimes with Jackler in AN surgeries
Best of luck to you
Mark
