Newly diagnosed – frightened, depressed and anxious

[Debbi]

Hi Irina-

I see you are in NY - if you are anywhere near NYC, I can personally recommend Drs. Golfinos and Roland at NYU.  They just removed my AN about 11 days ago.  If you want more information, about them or me, feel free to PM me.  Try not to get overwhelmed - it is indeed scary to have anything growing near your brain. 

I found this sight to be of immeasurable help and support to me when I was diagnosed a couple of months ago - take full advantage of it as you need. 

Let us know what else you need, okay?  And, let me know if you want more info on the NYU docs.  BTW, there are also several other top surgical teams in NYC who treat ANs - you will be in excellent hands.

Debbi (11 days post op and back behind the wheel of a car)

[irina]

 have anyone heard about doctors M.Sisti and Steven Isaacson at Columbia University?

[jerseygirl]

Hi Irina,

Yes, I visited them both and liked them very much. They recommend GK first if your tumor is 10 cubic millimiters or less. They are absolutely worth visiting even if all you do is learn about your tumor and GK. I got an enormous amount of information from them. Also, keep in mind that Dr. Isaakson is one of the first people to work with the GK machine, has 10-year data coming out from Columbia. They are the oldest installation of GK in NYC.

The reason I did not go with them does not apply to you: I had a regrowth and ruled out radiation because my tumor was on the brainstem. Dr. Sisti next advised a very conservative surgery whereas he would not take all of the tumor out but leave quite a bit on a facial nerve. I took a chance with another surgeon, my facial nerve has been saved, no tumor seen on MRI and I am almost completely recovered (yay!!!). I am also pain free (this is heaven!!!).

One great thing I like about Dr. Sisti is that he listens to patients' concerns. My concern were headaches because I got them after the first surgery. Dr. Sisti does cranioplasty (closes the incision differently than most surgeons) and avoids headaches. Definitely ask him about it. He is also very experienced in ANs, he has done hundreds of them. In short, I would recommmend them to any  newbie. Best wishes no matter what you decide. Good luck!

                   Eve

[jerseygirl]

Correction here: it is 10 cubic centimeters, not millimeters. Sorry!!!

             Eve

[ppearl214]

Hi Eve and thanks!  I had to ask my Brit Bloke to do the cubic cm metric conversion for me... so that would be approx 2.15cm x 2.15cm or smaller for GK? I've heard up to 3cm or less (usually all microsurgery done if larger than 3cm, based also on location of the AN).

Thanks for sharing this!  I've now learned metric as well (bloke has been trying to get me to learn it!)

Phyl

[jerseygirl]

Phyl,

Cubic measurements are THREE multiplied by one another. So, it is 2.15x2.15x?. There should be three of them. It is not a perfect measurement of a tumor volume but it gives a good approximation. I bet they have software that measures the tumor's volume exactly. So, Irina's tumor measures 2.4x1.6x1.5 =5.76 cubic cm, well under 10. Mine was  bigger but weirdly shaped.

 Also, I should add that Dr.Sisti considers GK a failure if the tumor starts growing after 2 years. I did not ask how they distinguish between swelling and growth. Yes, radiation specialists usually talk about the tumor in cubic centimeters while neurosurgens are mostly concerned how much work they have to do to separate the tumor from the cranial nerves. So, 1.6 cm is less for them than 2.0 in any direction, for example. That has been my experience so far. I hope this information helps.

                          Eve

PS. I should also add that Dr. Isaacson pointed out that GK failures INCREASE as the tumor volume increases and approaches 10 cubic cm. After that, it is almost not worthwile (and dangerous of course) to do GK. That is why Dr. Sisti told me that I should make up my mind about GK ASAP because any tumor growth spurt will eliminate any chance of GK success. Surgery, he said, can wait and I did not have to do it immediately and safely postpone it for next year. I did exactly that. I saw him in August of 2006 and had surgery on June 27,2007.

[ppearl214]

Thanks for sharing this Eve.. most appreciated.