Gamma Knife in New York

[Kathy D.]

I am newly diagnosed with a 12 mm acoustic schwannoma with considerable hearing loss.  After much confusion, I think I am leaning towards gamma knife.  Does anyone have any information on the gamma knife centers in New York, either Columbia Presbyterian or NYU?  How many ANs they do,, etc.?  I'm also open to traveling to another center within driving distance (Boston, Baltimore, PA.) if there is a center that is considered superior to others.  Thanks in advance for your help!

Kathy D. 

[jtd71465]

I had surgery with Golfinos at NYU, I also know that he preforms Gamma Knife but I'm not sure of the numbers. 

[jerseygirl]

Kathy,

Sorry for the late reply but here it is. I live near NY and had my first surgery at NYU in 1988. When I had a recurrence, I visited Gamma centers in NY as well as surgeons (sometimes it is one and the same). I am aware of only two Gamma centers in NY - NYU and Columbia Presbyterian. I spoke to both just to find out what is Gamma is all about and whether or not I have to go through the open head surgery.

First of all, they both bad-mouth each other, the fact that I did not like. It kind of takes away from both of their competence. Secondly, NYU does not share their success rate with everybody else but Columbia does. That does not mean, of course, that you won't be a sucess at NYU. Plenty of people here on the board are and don't complain. Columbia was more thorough and told me about my tumor and already weakened facial nerve from the previous surgery. In additon, I found out that Columbia ( I am not sure about NYU, you would have to ask) uses a manual control system of positioning whereas between each shot of Gamma technicians will manually position me. The tumors that are not perfectly spherical get "hot" and "cold" spots from Gamma radiation. I don't know what your tumor is like but mine was far from it. I also don't know how many shots - isocenters- you would need. I needed a lot, way more than ten! Finally, Columbia program is older, they did more ANs and is very renowned for that. So. keep this in mind also.

The golden standard in US is Pittsburg location of Gamma. It is the oldest installation in the US and they wrote extensively on the subject in professional literature. They use automatic positioning system and newer system version which results in less radiation to the body as well as greater precision. They offer free consultations and have long term data. If you are interested, send me a PMl and I will find an e-mail that arranges a free consultation with Gamma center in Pittsburgh.

Good luck to you, I hope everything works out!

               Eve

                                                            Eve

[Kathy D.]

Thank you both for your responses.  Eve, interestingly, I have met with doctors at both NYU and Columbia and have come to many of the same conclusions you have.  After extensive research and talking to a few people, I have sent my records to Pittsburgh and hope to hear back from them maybe tomorrow.  Even though it will be much less convenient, I feel I need to go where I feel comfortable and where the experience is.  I've also sent my records to Georgetown to inquire about CyberKnife.  Have you heard much about it?  I'm definately leaning towards Pittsburgh with Gamma Knife, but I'm very anxious about the headframe.

Thanks again for your response.

Kathy

[jerseygirl]

Kathy,

I am glad that you came to the same conclusions and already contacted Pittsburgh regarding Gamma. You are very fast! I urge you to go through the Radiation section of this board to learn about the differences between Gamma Knife and Cyberknife. It is still hotly debated area. There is also Cyberknife support group. If I had to choose  Cybernife, I would go to the oldest installation in California. There are a number people on this forum who had excellent outcomes in Ca but I heard nothing about Georgetown installation (how old, what protocol, who are the doctors, etc). In fact, if you post your questions there, they will not go unnoticed!

I only investigated Gamma because it was important to me to have only one shot of radiation as well as the oldest installation in the US with multiple studies and long-term data. After my research, I decided on surgery again because my tumor was long, narrow and attached to and pressing on the brainstem. If it swelled suddenly, I would have been in trouble. In addition, I had no hearing to lose on that side because it was gone after the first surgery. This is obviously not your situation, so this is not something you worry about.

Regarding the mask on Gamma, it is a one-shot deal and most people say who have been through it that it is not as bad as they imagined. It cannot possibly be worse than two surgeries! You do what you have to survive. If Gamma is your preference, don't let the mask stop you!

Best of luck to you and keep us posted!

                       Eve

[Kathy D.]

Hi,

Just wanted to give you my update.  My final decision was Gamma Knife with Dr. Kondziolka at the University of Pittsburgh Medical Center.  I chose UPMC because as far as I could tell, they have been doing Gamma Knife the longest and had the most experience with acoustic neuromas.  I probably could have had Gamma Knife in New York City with the same outcome, but I felt UPMC was where I wanted to be.

I had my Gamma Knife radiosurgery on January 23rd and everything went well.  I was very frightened, especially about the headframe, but it was all for nothing.  The doctor and staff were great.  I was in the hospital as an outpatient for about 6 hours.  I was slightly sedated on and off during the day and didn't feel any pain or remember anything uncomfortable the whole time.  I had a slight headache that evening and part of the next day, but didn't need to take anything for it.  I was back at work in four days.  My hearing and tinnitus seem to be the same as before the radiosurgery.  My dizziness/balance were a little worse for about a week, but now seem to be back to where they were before.  I'm just so glad to have this behind me and thankful that it was diagnosed while it was still small.  I'll have an MRI in six months to see what's going on. 

Thanks for your help and good wishes.

Kathy

[jerseygirl]

Kathy,

I am glad that everything went well! Hope the tumor dies and shrinks. Thanks for the update.

               Eve