Author Topic: New Yorkers! Choosing between Kondziolka, Pannullo and Greene - any input?  (Read 4062 times)

Jed Becker

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I'm reposting this here as I originally posted it in a different, and I believe incorrect, forum. Apologies to the moderator.

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
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richcooks

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Jed,

  I have no knowledge of the Doctors you mentioned.  However, I did have my 7mm AN treated here at the Jersey Shore 3 years ago.   I chose FSR because I too wanted to preserve my hearing.  I had five treatments.  I am happy to say that my treatment was successful and my hearing is the same today as it was before my treatment.  You have to make your own decision and I know I researched for six months and visited several different doctors before I made my decision.  I found the same thing you did.  The Doctors use the technology that is available to them.  My major concerns centered around hearing preservation, dose, and accuracy of the technology.  I always asked the same questions, like: does my tumor make a good target?  How do you aim?  What are the challenges to aiming?  How do you minimize the risk from collateral damage to surrounding tissues? 

 I believe that you need to do your homework and make a decision.  I am very happy with the decision I made and my results are the best I could have hoped for.  I hope the best for you.

Rich

Laurliv12

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Hi Jed,
Just saw your post--I just got diagnosed last week and am beginning the research process. I met with Dr. Green today and thought she seemed quite honest and not overpromising at all. Wondering if you decided to go with her and, if not, who you chose?
I am also a musician, btw, although I now just play in bar bands for fun :)
Best,
Laura
Diagnosed 8/20/14, 1.5 x 1.4 x 1.25 cm, right side
Nearly perfect hearing in affected ear. Presented with intermittent numbness on right side of tongue, lip, and cheek and occasional "buzzing" in ear.

v357139

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The only of those I know anything about is Kondziolka.  He has alot of experience, and is supposed to be very good.  I have also heard that CK gives higher chance to save hearing than GK.  But CK is newer, so the long term effects are not as well documented.  The only CK doctor I know of is Dr Chang at Stanford.  He is supposed to be very good.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

NYLady

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Hello Jed,

If you have decided on CyberKnife, there is a great doctor at Winthrop University Hospital in Mineola (Nassau County on LI).  His name is Jonathan Haas.  He is the head of their Cyber Knife department.  One of the former moderaters of this forum (Jim) used him and raved about him.  I have heard many good things about him.  While I did not choose CyberKnife, I understand that he and his team are top knotch, if you want to travel to Long Island.

Best to you
NYLady