Gamma Knife with Dr. Kondziolka in NY

[robinb]

I am trying to schedule in NYC NYU/Langone and just found out from Dr. Kondziolka that the entire Gamma Knife, along with many other things, was wiped out during Hurricane Sandy. He is perfoming the procedure at Hackenack UMC/John Theurer or Nassau Hospital. Choice is patient's. Newest equipment at Hackensack, plus its closer to city.
Would like to hear from anyone that has been to Dr. K post Sandy and what experience was like; coordination between facilities and other docs on team not from NYU/Langone.
Newly diagnosed and treatment decision made thanks to the many people on willing to talk list and this forum.

[MDemisay]

Dear RobinB,


I feel that Dr. Kondiulka is an immently qualified brain surgeon particularly in Acoustic Neuroma removal. I considered him for the subtotal removal of my AN in 2004 among 14 docs. I finally settled on Dr. Sisti because of my previous experience at NY Presbyterian in 1974 and because Dr. Sisti has a way of calming me. I later had to go back for radiation (which I had in June 2012). However, one of my top picks turned out to be Dr. Kondziolka again this time I interviewed him personally in UPMC. I only went with Dr. Sisti because I happen to live close by.

It is truly sad about Hurricane Sandy, which NYU Langone Hospital is still recovering from! No doubt, Dr. Kondziulka is a well renowned surgeon and will bring his talents to whatever hospital he is at.

He taught Dr. Sisti how to use the Gamma Knife. In fact if you ask the two surgeons(I did!) both would feel quite comfortable undergoing both surgery and follow up Gamma Knife from each other! I'd call that a ringing endorsement wouldn't you? Good luck!

Mike

[robinb]

Thanks Mike-

With all the insurance and facility hassles w/Dr. Kondziolka in NYC, I booked my treatment w/Dr. Lunsford at UPMC for Jan 24th.

[MDemisay]

Dear Robinb,

He's good as well. He was practicing with Dr. K. in UPMC. Sounds like you are set with doc choice.....Now let go, and let God. It also is helpful to meditate. When I underwent Gamma Knife in June, I was using the "I AM" meditation with Dr. Wayne Dyer available from Hale House.

 When I went in for treatment,
nobody had told me that Gamma Knife machine was silent so it was actually on when I realized it, I was half way done!

Relax, it's relatively painless and after about 3 weeks the pin holes should be filling in.

[PamelaD]

MDemisay and RobinB,

Robin....good luck on the 24th!  Sent you a PM before I noticed your other posts. 

MDemisay... how are you?? Were you pleased with Dr. Sisti and the Gamma K treatment that you had with him?     

As I mentioned in a previous post,  Sisti suggested that I monitor and wait, whereas Kondziolka and Lunsford suggest that  treating earlier is better than waiting... 

Any thoughts??

Thanks!
In friendship,
Pamela

[dtorres135]

I am currently with Dr. Roland/Golfinos and thought I head the surgery route but I keep going back and forth and starting to look at GK with Dr. Kondzioilka since he is with that team.  Any thoughts.

[MDemisay]

Dear Pamela,


Depending on whether or not you feel comfortable and depending on the size and location and the surgery type.Hmmmm....It would be hard to say.....I can only say that both Dr. Kondzuilka and Dr.Sisti agreed on surgery in my case in 2004. The best advice I can give is get the opinion of another doctor and then pray on it.

I know this may not be the answer you expected, but in your case I don't know. If Dr.Sisti says you should watch and wait it's probably because he doesn't do surgery with tumors below a certain size. However if you feel more at ease with surgery performed by Dr.Konzuilka and he has discussed all the pluses and minuses of it. Then go for it.

I highly recommend interviewing  3 docs with the same approach, however.


 As you probably already know, there are certain things that you will have as a result of surgery that you don't have with Gamma Knife. Gamma Knife surgery is not surgery at all and only involves one shot radiation (and only involves an outpatient stay involving a head frame that has to be screwed onto your head (don't worry the holes fade).

Had that option been offered to me(Gamma Knife) I would have taken it over the surgery.

 In fact I was considering Gamma Knife (with another doctor in New Hampshire)  but the targeting method used wasn't exact in my case (CT instead of MRI due to an inability to have an MRI because of preexiting clips from my other surgery (see below) So I went back and did the surgery with Sisti.

Whatever you do, you would be wise to do the due diligence of the research. Whichever you choose these are my two top docs, you will find that you will be pleased with the results.


They have the experience of doing hundreds of similar cases.


You have a tough choice ahead of you, good luck I will be praying for you. Come back often or PM me.

Your friend,
Mike

[millie]

Mike has said it all.  Praying for you.  Mil

[robinb]

Hi Pamela-

Sent ypou a PM back-

Both Dr's had same opinion, basically, what are you watching and waiting for...good question. Because I live in CA i also saw Dr Friedman at House; of course he said surgery was best option, but he would do GK if thats what I wanted.

I have some hearing; it gets better w/Prednisone, some tinnitus, no balance or vertigo issues. So I agreed w/that I didnt want to watch and wait to see if symptoms got worse.

Will update after GK. Will also call you to share my experience.