had first doctors appointment, confused!!

[Peggy]

Ok, so I went to Univ of Penn today, saw Dr Ruckenstein, he suggested Gamma Knife,  he also does surgery but thought I'd be better off doing the gk,  I do have another appt. on Wed with Dr wilcox at Jefferson Univ, do they do gk over there?  any opinions on gk, I havent researched this option much, I was pretty much thinking surgery but now I'm not so sure thats the way to go, another question, say I have this done and a few years from now its growing, can you have gk again or do you have to go to surgery at that point.  does this shrink the tumor at all?  Also, it is pressing on my brain stem, thats not good is it,  how long has gk been around, also this doc said he has only done about 10 surgeries on this a year, thats not many at all!!!!

what to do , what to do
I have no clue

Peg

[Dfcman]

I never like to discredit doctors, but I would be REAL nervous.   I felt good when my surgeon said he does about 100 a year.  He said on the average of 2-3 a week.  Give or take.  How big is your AN?  I went to Allegheny general in Pittsburgh.  With this kind of surgery, I would want the best.  We were considering HOUSE but AGH is one of the best.  I had one of the best doctors, who worked at House and so did the other dr that works there too.   If you feel the least bit confidence lacking, there is nothing wrong with getting a second opinion.  I mean at least he's honest, but I felt really good about meeting with my dr to discuss what should be done.  A good bedside manner always helps, any good doctor should know that.

Chris

[Betsy]

Hi Peggy,

You sound so overwhelmed...which is understanding because it's an overwhelming situation.  Don't let yourself be pressured or rushed into a decision.  ANs are very slow growing, which gives you time to figure it all out.

GK has been around 30 years, give or take.  It's done in one visit, with a headframe that's attached to your skull.  Basically, the radiation zaps the AN, then over time it begins to die and in most cases, shrink.  There are plenty of folks on this forum who have been through GK treatment and can give you more precise details....I'm still pre-treatment.  I agree with Chris, I wouldn't be comfortable with a surgeon who only did 10 AN surgeries a year either.

I found this site to be very useful when I was beginning my research.  http://www.acousticneuroma.neurosurgery.pitt.edu/index.html

Be patient with yourself Peggy.  It will all come together eventually and you'll find a choice that's right for you.

Betsy

[sgerrard]

Hi Peggy,

  As a newbie newly headed for radiation, I can tell you a little bit about GK and CK. Both are equally good at tumor control, in the high nineties percentage wise. There are relatively few cases of regrowth, one reason there is less info on what happens in that case. They generally give 2.5-3 cm as the upper range of suitable size for radiation. CK is a little better with respect to sparing nerves and brainstem, due to splitting up the dose over several days, and more flexibility in targeting the beams. I would feel good with either, but am going to see if I can get CK as a first choice. Checkout the links from Betsy and Bruce.

  Although it is not really fair, I think I would be wary of having surgery with a surgeon who recommends radiation, especially if he only does 10 ANs a year. If I went with surgery, I would want the surgery-or-nothing type who does them every day, and twice on Sundays. If you are thinking surgery, keep shopping.

  Betsy had it right, it will come together for you in time, just hang in there.

Steve

[Jim Scott]

Ok, so I went to Univ of Penn today, saw Dr Ruckenstein, he suggested Gamma Knife,  he also does surgery but thought I'd be better off doing the gk,  I do have another appt. on Wed with Dr wilcox at Jefferson Univ, do they do gk over there?  any opinions on gk, I havent researched this option much, I was pretty much thinking surgery but now I'm not so sure thats the way to go, another question, say I have this done and a few years from now its growing, can you have gk again or do you have to go to surgery at that point.  does this shrink the tumor at all?  Also, it is pressing on my brain stem, thats not good is it,  how long has gk been around, also this doc said he has only done about 10 surgeries on this a year, thats not many at all!!!!

what to do , what to do.  I have no clue.

Peg

HI, Peg:

First: don't panic or despair.  You have options, you just need to sort them all out.

There are sections on this website that explain radiation options and link to other GK sites.  Use them and get educated, which will help you a lot and is certainly worth your time.

The AN pressing on your brain stem - as you guessed - is not good.  I had the same problem but with a large (4.5) AN that required surgery plus radiation. 

Radiation (Gamma Knife, Cyber Knife or FSR) is intended to shrink the tumor and kill it's DNA, eventually destroying the tumor's ability to survive.  I had surgery to cut down the tumor, then FSR to kill it.  My last MRI scan showed shrinkage and necrosis, so it worked. 

If radiation doesn't kill the tumor it may be repeated.  Surgery always remains an option.

I can only echo the other comments that strongly suggest you seek out a surgeon with more experience operating on acoustic neuroma tumors than Dr Ruckenstein has.  In my opinion, any surgeon who hasn't performed at least 400 AN surgeries is still learning.  It's that delicate and specialized a procedure, fraught with possibilities for post-op complications if not handled correctly.   Complications that you, not the doctor, will have to live with.  Be cautious, don't feel pressured or rushed into a decision.  It's your health at stake.   

Please try to stay connected here.  We want to help.

Jim