Gammaknife and Dr. Golfinos

[lthompson]

Hi, I know recently, I have seen a few posts from newly diagnosed, of syou guys having appointments with Dr. Golfinos at NYU Medical Center and I have a question. I know he does gammaknife at NYU, but has there been any talk of NYU acquiring a cyberknife machine in the near future and did any of you raise that particular question with Dr. Golfinos when you met with him?  Just curious, I might need to make a decision on my treatment finally, since I am having a hearing distrurbance that started yesterday and I am currently on prednisdone, by Dr. Roland and  so far it hasn't cleared up.  Had a hearing test today and it is definitely worse than the one I just had end of February which showed perfect hearing in my affected ear.  I am now experiencing buzzing, fullness and sounds are somewhat distorted.  This happened 2 years ago and I was fortunate to have prednisdone correct it in a few days, not sure if I am going to be as fortunate this time and maybe it is finally showing signs of growing.  Not sure, but I am curious about cyberknife and if NYU would purchase it.  If not, if anyone out there has had gammaknife at NYU with Dr. Golfinos I would love to hear from you about your thoughts and results.  Thanks.

[Battyp]

HI L,
  I can't answer your question but wanted to let you know I'm praying the prednisone works for you!  Let us know how it all works out!

Hugs M

[lthompson]

Hi, thanks for the kind thoughts.  Seems a little better today, but I still have the distortion in the tones.  I am having an MRI within the next couple of weeks to see what is going on with the tumor and then will make a decision regarding treatment.  Also, I do not like prednisdone at all, but unfortunately, have to be on it to see if it will correct the hearing, but any of you who have had it, have trouble sleeping and if so, did you take anything for that or what did you do?  The last 2 days I can't sleep at all and I wonder if it is related to the drug.

[jeansear]

My aunt is scheduled to have GK with Dr. Golfinos on April 12th. I will post to let you know how things work out.

[ppearl214]

I had my CK in Boston at BI but a terrific reference point is the CK Patient support website, where the dr's there (they volunteer their time -- no paid compensation) will answer questions about CK and GK (Dr. Medbery performs both GK and CK in Oklahoma), maybe the website can help:

http://www.cyberknifesupport.org/forum/

Just a thought... hang in there all and please keep us updated on upcoming tests and treatments.

Phyl

[ceeceek]

Just wanted to add my two cents..re prednisone...definately will mess up your sleep habits...common side effect, but not to worry, doesn't last long, and as soon as you are off, you just have to make effort to reset your body clock.
Ceecee

[lthompson]

Hi, thanks for the information.  I would be very interested to see how your aunt makes out with the gammaknife procedure.  I should be off these steroids by Monday, so hopefully next week I can catch up on my sleep. 

[jtd71465]

I see Golfinos on 4/9 for my first MRI since surgery (what happened to the time).  I'll ask about CK when he reviews my MRI on Monday.

Joe-

[lthompson]

Ok, great thanks.  Let us know how your results turn out. 

[jeansear]

My aunt saw Dr. Roland, for another opinoin, and decided to wait to have the Gk until next month. He told her she might have balance problems. But he felt she was a good candidate for the Gk instead of surgery.I liked both Golfinos and Roland.  I will keep you posted. Good luck to you!