New Yorkers! Choosing between Kondziolka, Pannullo and Greene - any input?

[Jed Becker]

Hi everyone and thank to everyone who makes this forum possible.

I'm choosing between three doctors here in NYC and would love to hear from anyone who's had radiosurgery with any of them. How was the experience? Were they easy to work with? Available post surgery? Did they over-promise?

The doctors are Dr. Pannullo @ Weill Cornell; Dr. Kondziolka @ NYU; and Dr. Greene @ Mt. Sinai.

Additionally, there's the same old question of fractionated vs. one-shot radiology. NYU only has the GammaKnife which does NOT do fractionated, yet I'm very concerned with preserving the hearing I still have (I'm a professional musician and audio engineer, so this kinda sux ..) and I've had some doctors lead me to believe that fractionated is safer and a better bet at preserving hearing. Yet I've seen literature that says that there's not enough data yet to back up that claim. Any input?

Thanks in advance to any replies.

Jed

[mesafinn]

Hi Jed,

I can only weigh in on two of your questions regarding doctors and hearing preservation.  First, I do not know Drs. Pannullo or Greene.  I did have a consultation with Dr. Kondziolka, and he was my first choice.  He has an amazing track record, he was personable, had a great "bedside manner," he was responsive to all of my inquiries, and his reputation is quite solid.  I think he has a little bit of the god-complex, but his confidence was also reassuring.  The only reason I did not go with him was at the time of my decision, his practice had been impacted by Hurricane Sandy which made things more complicated--so I went to his former colleague Dr. Lunsford in Pittsburgh (who was a mentor to Dr. Kondziolka).  He is someone who has done some of the most GK procedures in the United States. 

I, too, heard the claims that CK had more success with hearing preservation than GK.  I could only find the narratives that stated this rather than any hard research and literature to support the claim.  Now, I only have my own experience to share.   I had GK 15-months to the date.  In this time, I lost 30% of the hearing in my AN ear within a month of my procedure, but my hearing has since stabilized, and I have lost no more hearing in the last 14 months.  I feel fortunate in that regard.  I've had to readjust some behaviors (ie, restaurant talk is mostly overwhelming, and I sit with my good ear "to" my audience; loud sounds still trouble me; and, I have intense tinnitus but had that before and after my procedure) but by and large am quite comfortable with my hearing preservation post-GK.

Those are only my individual experiences....I can't make any solid claims about the other doctors and only you can decide if CK or GK is the better approach.  As anything, there are pros/cons but options tend to be good things...!

Wishing you only the best,

P.

[Jed Becker]

Thank you so much for your response and insight, I greatly appreciate it.

[PaulW]

There is quite a bit of debate over multiple sessions or single session.
One thing is now considered a factor is radiation dose to the cochlear.

I had single dose Cyberknife, largely on the recommendation that an extra two or 4 doses exposes you to a lot more radiation and that the results are the same, or very very similar. My doctor said if I really wanted three doses he would give it to me but it would cost three times the amount, and from his experience there was no difference and the cost was unnecessary.

My personal view is that the increased accuracy of all machines, and imaging over the last 10 years has reduced the cochlear dose.
Smaller AN's being treated with Radiation, patient selection, reduced radiation doses from 14Gy to 13 or 12Gy, and when studies were released have all played a role in clouding the debate.

[Jed Becker]

Paul - thanks so much for taking the time to reply. I've now seen all three doctors and have to make a choice. There's so much competing information that it is very difficult!

Jed