new member, nice forum

[rupert]

   Actually I spend more time in Pa. than in NY.   At this point I still may back out of the surgery.  I will be closer to a decision after my conult on Mon.  The problem is the surgery was scheduled rather soon and although I have researched Gamma Knife a  lot,  I have not met with anyone in that regard.  I don't believe it will be possible to talk with those Dr's before my surgery date so if that is what I decide I will have to cancel the surgery.  Talk with the GK people and then if it doesn't work out for some reason.  I will go back and reschedule surgery.  I know a lot of people say to go with your gut.   Right now my gut tells me I may be making a mistake with surgery.  I guess the only down side is that it would push the surgery out another three months possibly. 

[suboo73]

Rupert,

Since ANs are slow growing and benign, i think you have time to complete your research.
If your 'gut' tells you different, you have time to continue weigh all your options.

Many thoughts and prayers to you!
We know what you are going through.

Stay strong.
Sue

PS I sent you a PM.

[sgerrard]

Rupert,

I think being confident in your treatment choice is pretty important, so unless there is some reason it needs to get treated right away, it will be worth it to take the time you need to reach that level of comfort. You might be able to cancel the current surgery, and go ahead and schedule another one in say February. Then have your consultations and if you decide on GK, cancel that surgery too, but if you decide on surgery, it would already be on the calendar.

Keep on truckin', you will get there.

Steve

[leapyrtwins]

Rupert -

I'm a big believer in "going with your gut" and IMO you need to be comfortable with your decision.  If you think radiation might be a good option for you, you at least owe it to yourself to talk to the GK people.  If it means postponing your surgery while you do your research, then I say postpone it.  If you ultimately decide it's your best choice, you can always reschedule it at a later date.  As Sue said ANs are benigh (99.9% of them in fact) and the majority of them are slow growing.  You definitely have time to investigate all your options.

We're here to support you in whatever choice you make.

Jan

[pjb]

I went with surgery I was definitely not very good with researching and in a way I think it was best sometimes less knowledge is good too much you over think it.  I knew I went with the best surgeons in NY and trusted them I also knew that I wanted this thing out of my head.  I was lucky the tumor was totally removed no facial paralysis balance was not bad, but of course some other complications SSD, headaches, tinnitus but there are alot of people who experienced this before surgery and after surgery and are able to compensate for it.

My prayers are with you,

Pat

[Tamster]

Hi Rupert,
Many on the forum have had surgery and would do exactly the same thing again, many have had radiation and stand by their choice, so usually it is not a matter of one being better than the other, but rather one suiting the needs of the patient, their tumor, and their personal preference better. What seems most important to me, though, is that whatever decision you make is YOUR decision and that you are at peace with it. That confidence really is critical to helping you face your  treatment with a positive, got-my-ducks-in-a-row, torpedo-ahead attitude. By the time my surgery date came, wild horses could not have stopped me. I was sure and I was READY. If you need more time, to be sure and ready, take the time, and talk to other docs. Once you're sure that the treatment is the right one for you and that you've got the best qualified doctors working on you that you can possibly find, you'll be able to give your trust to them, and will be confident that whatever outcome you end up with will be the best you could have gotten.

Tammy

[Tricia (horsekayak)]

Welcome,

Have been reading posts from others and can see that you've received all kinds of great advice, so just want to emphasize what seems most important to me:

make sure you feel ok within yourself about your decision, even if it means "inconveniencing" people who scheduled surgeries,  etc. ...this is too important ... your attitude about your decision will affect how your body handles your recuperation

i chose gamma surgery...initially wanted surgery, but some other medical conditions caused me and my doc to re-think things...i took lots of time to research both options (here and on many other websites/forums)...[NOTE:  make sure you have contacted the Acoustic Neuroma Association and requested their free info packet..it has great refs, and a list of folks willing to talk with you one-on-one via phone or instant message]..once i decided, i felt free, released from a lot of tension, and content that i had made the right decision for MY situation

i am happy with my choice, but what matters is that YOU are happy with your choice...this situation is certainly one where you need to  put your needs front and center.... i'm glad i did not worry about offending surgeons and staff i interviewed...the best thing i did was get organized and persistent about askiing lots of questions, including the obvious, silly, dumb, etc....whatever you want to call them...the dumb and silly ones were the questions that helped me most in making my decision...because i could watch/listen for the reactions of those people answering them...persons who could not empathasize with my need to understand fully were the first ones i eliminated..believe me, there are physicians who are both empathetic AND highly skilled in dealing with surgery and/or gamma kinfe treatment...you will find the right combination and your gut will let you know...

 there are lots of good folks here to support you

tricia (horsekayak)

[leapyrtwins]

NOTE:  make sure you have contacted the Acoustic Neuroma Association and requested their free info packet..it has great refs, and a list of folks willing to talk with you one-on-one via phone or instant message]

Rupert -

this is a very good point from Tricia.  The ANA literature is very helpful and so is the WTT (willing to talk) list - although I'm tooting my own horn a little here, because I'm on it  

Seriously, these are two very good resources that I usually mention to newbies, but forgot to mention to you.  I'm glad Tricia remembered.

Thanks, Tricia  

Jan

[Adrienne]

Welcome Rupert,

You've come to the right place.  Everyone on here is so willing to help, talk, vent with, gain knowledge from, etc.  It's a HUGE help.

I wondered the same thing prior to treatment.  Firstly though: regardless of your specific outcome, you WILL carry on and have a great life.  There are shining examples of that throughout the board.  As someone who came out with minor 'effects' afterwards (ringing in my ear and some reduced hearing), I need to tell you that it's sometimes hard to come on here and post that exact thing for fear of sounding like you are boasting.  It's a tricky thing.  One one hand you want to make it known loud and clear that you CAN come out of this doing excellent.  On the other hand, every time you do that you feel like you are rubbing it in.  I suspect I'm not the only one that feels that way.  And my *guess* is that many of the people that come out of it relatively unscathed move on with their lives and don't come back to the board very often.  That truly is a guess though.

I certainly don't come as often as I used to (or should.....) but I like to stick around to give hope when it's needed that things can be A-O.K. afterwards.  I was CRAVING that reassurance prior to surgery, and lapped up any post I saw with positive news.

Good luck to you!

Adrienne

[rupert]

   So much great advice,     so many nice people.    Thanks everyone.  I never have been much of a poster. Actually I only post on one other forum (very little) and that is not related to anything medical.  Talking with people here though seems natural and easy.   I will probably ask some more specific questions in other parts of the forum. Might even start using the emoticons.   Thanks again .          Bryan

[jaylogs]

Yes, this place is terrific, isn't it? I did a TON of research before I made my decision on what kind of surgery and where.  I did notice one thing while I was in the hospital: It was VERY clear those who did their research and those who didn't.  It seemed to me like those who did their research like most of us on here were more at ease and not so nervous compared to those who didn't do a lot of research.  Knowledge IS power! Good luck to you and continue to post and/or vent!

[wendysig]

Hi Rupert,
I see you've gotten a lot of good advice from several wonderful people in  of our group and really don't have anything to add other than to say that I'm sorry to hear you have an AN but am glad  you found us.  If you decide that surgery is definitely not for you you should look into your other options.  Treatment choice is not an easy thing and you should be as informed an comfortable with your choice as is possible.  As Sue pointed out, ANs are slow growing and benign.  Since yours is on the small side, you have the time to take your time making that decision -- you will know, in the end, what is right for you.  Initially I was leaning toward radiosurgery, then surgery and back again.  For many reasons I just felt surgery was the right choice for me and I have no regrets.  My only issues are being SSD (single sided deaf and  this would have been the case with GK too since my hearing was pretty much gone prior to surgery) and  a minor balance problem and I believe that will continue to improve.  There is life after AN and it is good!

Best wishes,
Wendy

[Lynn Mc]

Hi Rupert,

Welcome!  I am awaiting surgery now, it is the 22nd.  I can't say I am not nervous - scared - plus tons of other emotions!!!  But - I have researched, probably tooo much and am as comfortable as I can be with my choice.  It is defiantly a choice that has to be right for you.  I did get a lot of info from this forum and the support is tremendous.   Good luck on your journey.

Lynn

[clr]

Rupert,

Sorry to see that you also have an AN.  You certainly have come to the right place! I did not find this place until 6 months after my daughter was diagnosed.

I see that Dr. Hirsch and Dr. Gardner is doing your surgery.  Dr. Hirsch performs the cyberknife, also. You may want to talk to him regarding this procedure.

Good luck!
Cindy