How exactly do you decide between CK & GK?

[Nancy Drew]

How exactly do you decide between CK and GK?  Surgery is off my list.  You see success stories and not so successful stories on this board about each--GK and CK.  And, people lead you to "reputable" research sites for both procedures (doctors, too).  I have heard that you have to be careful when you do research on the internet.  I feel like I am just getting a bunch of individual opinions here that might not be so scientific--just luck of the draw in some cases.  I know there are chances with any type of treatment, but personally I have found that this site is starting to confuse me more and more.  I am sure I can go to any doctor who does any kind of treatment and get their opinion that says their treatment plan is the best.  Maybe I need to lay off this site for awhile because it is confusing me to the point where I want to scream.  I will have to give kudos to Steve however because he really seems to be objective about CK and GK even though he chose CK.  Thanks Steve.  Maybe I am just haviing a bad day.  I will probably get slammed from this post, and I am really sorry if I am being insensitive.  I respect each and every one of you who has an AN.  I know it's not the same, but I think my Subaru is better than my son's Toyota.  He thinks his is better than mine.  And, you can find stats comparing both, and you can always find one saying their car is better than the other.  I have a fireman friend who is usually first on the scene at car accidents, and he says that the car he sees as the safest is the very one that is ranked the lowest on safety.  He has two of these cars, and I now have one too--not the Subaru by the way.  You would think he would know after dragging many people out of their cars.  He has been in his profession for over 25 years so he is not a newbie.  I am sure other firemen have their favorite car for safety as well.  Go ahead, slam me! 

Nancy Drew  (still investigating and baffled!)

[Lorenzo]

Nancy,

Slam you? Not at all! On the contrary! We've ALL been in the same spot round about the same time as you are now. There is NOTHING to be slammed. I know I screamed, numerous times and loudly too. Boy did I what. I mean, how the heck DOES one decide???  My Renault is better than a Skoda (ok, we have different cars here), but they both have an engine and four wheels and get us from A to Z. Why a Renault over a Fiat or who knows what? How does one decide?

Frankly, I do not push either CK, or GK or Surgery. The moment I stopped screaming was the day I realised that in the end, I had to make the choice. I could read as mcuh and as extensively as i wished, but in the end it was my choice, and only mine. So, it might have been unscientific, but the ONLY way I found that helped me making a decision was to think ahead. What treatment made me feel comfortable? What set of cricumstances made me feel at ease? What people did I feel comfortable with? I decided I'd better pick a path that I was prepared to follow all the way, with no regrets, no 'what ifs' and no 'I should haves'.

But, that's me. I found my way, after months of screaming, confusion, doubts, panic, pain, fear, determination, gritting my teeth and not really understanding a lot of the stuff I read.

And, I may add, in the end, I realised, I just kept reading the same stuff over and over and it was just presented slightly differently, with more or less details. But it all led to one place, comfort zone, personal choice.

So no, I'm certainly not going to slam you, In fact I'm glad you got to this point, because one has to before being able to make a decision, I think. it shows you are about ready to make the next step. And you know the best part for me when I made that decision? It felt wonderful. All the doubts, confusion, fears, all vanished in an instant.

Welcome to this mad club of ours!

Ciao, Lorenzo

PS (had to add a PS here, sorry. It might sound like I'm pushing for CK in my posts, but I'm not. It's the only experience I had, so it's the only one I can feel comfortable talking about. I'm sure others are the same. I respect people's choices, who am I not to respect them! I'm not trying to convert anybody to CK or anything else. My own experience with CK was not all rose and had it's tough times too, very tough for me at the time. I still wouldn't change my personal choice.

I hope this helps in some way and not confuse you even more. By any means, keep away from here if it's confusing even more. Only come back if it helps. We'll all be glad to help if we can, in the only way know how to, being here.

Ciao

[Lorenzo]

Back again,

Might be a bit presumptuous of me, but I did a little bit of thinking. I haven't been asked to, but there you are, can't help it.

I'm not totally familiar with your circumstances but here's what I can gather from what I read:

You have a small AN
Don't know how bad your symptoms are, nor where the AN is.
Hearing preservation is a priority
Surgery is out.
That leaves GK and CK
GK is a one shot with a headframe screwed to your head and lower hearing preservation stats.
CK has a face mask, usually three sessions, and has better hearing preservation stats.
Both have excellent control rates.
Both kill but do not remove the tumour.
malignancy in the case of radiation for both is shown as being as low if not lower than any other way of getting a malignant tumour.
Recovery is similar for both I think.

There are two factors that need to be taken into account:
1) We are all different, so regardless of my outcome, or Steve's, you may have a different recovery pattern than we did. Might be easier, harder, longer shorter. One fact, FACT, remains for this point, neither you, nor us, nor the doc can predict how it will be. Easier than surgery probably, but then not neccessarily.

2) Second factor: what do you FEEL more comfortable with, disregarding all that you read.

In view of these two factors, you can discard 1) as that is beyond anybody's control. 2) on the other hand is entirely under your control.

The other factors listed above are there to support that.

This of course is totally simplistic no doubt, I don't know you, nor do i know your exact situation. But the above illustrates more or less what I came to write for myself when i came around to the realisations I posted earlier.

Please excuse me if I'm being too naive or stupid. I don't mean to. I go away now.

All the best, Lorenzo

[Pascale]

hello again! 

Well, I'm at the spot where I have to decide once and for all what I wanna do...radiation? surgery? Yesterday it was surgery for sure! to get it out, out, out!!! 

Then comes today....and I'm thinking... ....maybe radiation??

So yeah..it's good to come to this awesome forum where all of you are willing to over and over post message for the "lost people" out there.

Anyways, back to the topic:
- I've been told GK has been around for a while = we have stats to show how good/bad it works on different cases
- CK is newer and we don't have that much stats YET.

a quick question for you Lorenzo, since you did the CK: how much apart were your sessions? what were the simptoms? did the tumor grew??..

Anyways, I'll be back with more input.
Pascale

[sabuck]

Nancy Drew,

There is absolutely no way anyone here would slam you. Not just because the folks here are very supportive and nice, it's because all of the folks here have experienced the exact frustration and confusion that you are experiencing. Each procedure involves it's own set of risks and each person is different, each neuroma is different, everyone's age is different, and on and on.... It is mind boggling! 

I think you are right too that you go to a surgeon and he wants to cut. You go to a radiologist and he wants to irradiate. Just keep up your research! To be honest I sort of kept my head in the sand as far as coming to this site prior to my surgery. I did all of my research on medical sites with statistics. I was afraid of what I would read here. I'm not sure what I would have done had I read some of the posts prior to my surgery. My wife is a director of nursing at the medical center where I had my surgery. She talked with several docs and got some good information. This helped me\us ultimately make the decision. For the record my surgeon actually told me to come visit this site.

No one had mentioned CK as an option for me. I find this approach very interesting and worth investigation. Jim on the board had a combination treatment that sounds like the best of everything. Please don't get frustrated. I sucks to have to decide on anything. I remember the veil of confusion and fright that feel over me. Hang in there! 

 

[leapyrtwins]

Nancy -

I can't imagine why you think anyone would "slam you" for your opinion    Although we joke around a lot - we always have been, and I hope always will be, supportive of all forumites and their treatment decision - whatever that decision may be.

We always say that treatment choice is a personal choice and it's the same for you.  It's your decision.  Lorenzo's posts have some very good points - so does Bucko's post. 

IMO from reading all your posts, you are very overwhelmed and confused about what decision you should make.  This is VERY common and VERY normal.  Perhaps, as you've suggested yourself numerous times, you need to take an "AN break" and then revisit your choices.  It might give you a whole new perspective on things.

Respectfully,

Jan

[sgerrard]

Well if no one else will, I'll slam you. 

You are supposed to be taking a break! Try making fun of Jim Scott, perhaps by phrasing your question in his inimitable style, which I will now try to imitate:

Nancy, I commiserate with your consternation over the bewildering decision which presently befuddles you. Perhaps an interlude of repose would be of some benefit. You may discover that one of the procedures, performed at a particular institution, by a physician of inspirational quality, will become apparent as the course of action you find realistically feasible and acceptable for you to actually undergo. At such time, the decision will be a fait accompli.

Steve

[Lorenzo]

Morning,

Pascale: I had three session of around 40 minutes, one day apart. Tumour was 26mm before CK and it swelled after about a year to around 30mm. It's now 22mm at the 3 year MRI. Symptoms I had to deal with: increased Tinnitus, slight and occasional balance stumbles, mostly it was extreme fatigue like I never experienced before. For about 8 months I had real difficulties in working at my lecturing job due to some concentration problems.

BUT, I worked regardless, lived, dealt with it all and came out of it feeling better than I have for a very long time.

Jim II (aka Steve), very funny. Made me laugh, thanks.

Ciao, Lorenzo

[yardtick]

Well said Steve!!!!

Anne Marie

[lori67]

Steve -

Huh?   

Did you swallow a thesaurus?     Apparently, you must have become so good at knitting that you can also read the dictionary at the same time! 

Nancy Drew - don't worry - no slamming here!  Unless we're talking about Jan or Steve!     Even then, just harmless jabbing!  Hey, aren't you supposed to be taking a break?   

Lori

[leapyrtwins]

Nancy Drew - don't worry - no slamming here!  Unless we're talking about Jan or Steve!    

As always, thanks for the vote of confidence, Lori 

Steve -

couldn't have said it better myself    Quite seriously, I couldn't have.

Jan

[Lorenzo]

Lori,

No no, Steve IS a thesaurus! i was tempted to add 'the last of an endangered species destined to go the way of the other dino-saurs...' but that would be bad taste! I for one am going to keep that post as a reminder of what having an AN can do to one's writing skills.

Where is he anyway?

Ciao, Lorenzo

[lori67]

So, maybe since my surgery, I've turned into a poet and don't know it???

[Lorenzo]

YA, maybe you jsut turned in La Divina Comedia, by Dante. Jus tto keep on the Italian theme you know...

This said, I think we better shift this or we'll get told off again. Wouldn't want to cause Phyl to come out of rest again...

Lorenzo

[lori67]

Hey, at least it hasn't turned into talk of food or alcohol yet.  Or has it???