ANA Discussion Forum

Treatment Options => Microsurgical Options => Topic started by: cindyj on March 28, 2008, 02:05:08 pm

Title: Sorry, can I whine a minute...what to do, what to do
Post by: cindyj on March 28, 2008, 02:05:08 pm
To give a brief recap, I have consulted w/ several doctors here in GA, all whom have said, "Your choice"  and last night I heard from HEI...he also said my choice, but that if surgery (which is what he would do), he recommends Translab...wow

I know you all have been thru all of this and I know it's my choice and my AN is not an emergency situation.  But...gee, I am really at a complete loss for what to do.  I have read from posts here that we'll know what's right at some point and I will feel at peace about it, but I think I'm just getting myself more confused.  I think I need to decide which treatment I think is right and THEN find the appropriate and best team for that treatment approach.  Does that sound reasonable?  I think previously I was just hoping that one doctor would stand out that I really liked, and I would rule other options out that way.

Anyway, I'm really just "talking out loud" and know you guys can't find the answer for me, but thanks again for all of you that participate and give of your time so willingly to help others.

Cindy

Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: OMG16 on March 28, 2008, 02:15:28 pm
You are still very early in the process and it is completely normal to be even more confused at first.  Give it time, continue your research and write a list of pros and cons to help you along with the process.  You are right that only you can decide what is best for you.  However you can post the different options and see what others have to say about their experiences to help you come up with your pros and cons list.  Hang in there and yes it will become clearer as time goes by.  Kisses to your forehead.   :-* 16
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: ppearl214 on March 28, 2008, 02:17:17 pm
cindy, this may not help but maybe it will.

when I was in your shoes 2 yrs ago, just like you, I was completely overwhelmed during the decision making process. I reached out here, publically, to find some sort of sanity during the process.... so, here's the link.. and as you will see, folks gave great insight into handling the overwhelming info, they shared gawd-love-'em humor and most of all, such compassion that I was absolutely bowled over.

http://anausa.org/forum/index.php?topic=847.0

so, it may be worth a peek on how to deal with this decision making process. For me, I know what was shared with me in the thread certainly help bring me peace of mind and soul and when it came down to it... I knew in my soul of souls I was doing what was right for me and my situation.  My hope is that it also helps to bring you peace of mind as well......

Hang in there... you will know what is best for you.....
Phyl
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: leapyrtwins on March 28, 2008, 02:35:52 pm
Cindy -

IMO, some docs typically chose the approach they do the most and are the most comfortable with, which may be why the doc at HEI suggested translab.   This is much like doctors who only recommend surgery - not radiation - because that is all they do.  In a way, it makes perfect sense.

But, this is only my opinion and I could be completely off base here.  Did you ask the doc @ HEI why he would be translab as opposed to middle fossa or retrosigmoid?  Maybe there are reasons related to your symptoms or AN location that makes him feel that translab would be the best option. 

I think that your first step should be deciding if you want surgery or radiation and then go from there.  Listing the pros and cons of each treatment, like OMG suggested, is an excellent idea and may make things clearer in your mind.  If you should decide on surgery, then you can move on to deciding which approach you want to have and go from there. 

Everything can be so overwhelming when you're diagnosed with an AN.  Try to take things one step at a time,

Jan

Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: Jim Scott on March 29, 2008, 12:35:24 pm
Hi, Cindy:

Of course it's your decision and, as you correctly stated, we can't make it for you.  However, it's perfectly natural to feel conflicted when presented with a variety of options to treat a fairly serious condition that will have to be addressed in the near future.  Sometimes its a good idea to 'step back' and analyze your situation with a bit of dispassion, if possible.  You do have some time so I would suggest that you use it to your advantage, as you seem to be trying to do.  Don't despair, Cindi.   

For a small AN, my personal choice would probably be for radiation, mostly to avoid the hassle of surgery, hospitalization and a longer recovery.  However, radiation, while non-invasive, is not risk-free, as any radiation oncologist (and some AN radiation patients) will tell you.  The key is to (a) feel confident about the option you choose, and (b) feel just as confident about the doctor you choose. 

Life is a risk and AN surgery and/or radiation to rid ourselves of the tumor is another risk, but one we have to take at some point.  That is the reality we all have to face.

Don't rush into anything but understand what you're opting for (surgery, radiation, both) and be prepared to do everything possible on your part to insure a good outcome.  That includes choosing a doctor and facility that has vast experience with AN surgery or radiation procedures applicable to acoustic neuromas.  Doing that will help you feel more in control and boost your confidence somewhat.  Being realistic and realizing that this is a veritable minefield no matter path you choose is also a necessity, Cindi.

We're here to listen, advise or simply empathize, as you need us.  We want you to do well and be O.K.  I think you will be.  :)

Jim
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: sgerrard on March 29, 2008, 01:32:18 pm
I remember a day last August, which would have been about 10 weeks after diagnosis, and 6 weeks after finding this forum, when I was sitting in a boring meeting. I started doodling, and made a list, with surgery and radiation columns. Then I listed things like initial impact, recovery time, hearing risks, facial nerve risks, wait needed to get results, and so on. I was just killing time, not trying to make a decision, but later that day I looked that list over, and realized at that moment that I knew which one I wanted.

I think you are right, you will need to decide between radiation and surgery first, then decide on who and where later. For most people, it seems to be a question of whether to consider radiation, with surgery being an accepted option. If you can write down what you like about each of them, and what you don't like, it may help clarify the question for you.

Take exactly as much time as you need to reach a decision - but not one day more. ;)

Steve
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: Kate B on March 29, 2008, 02:58:40 pm
Hi Cindy,

No joke when I say I felt like a piece of kelp in an ocean of information.  I put together a "guide through the decision making process" which helps one identifiy the non-negotiables for you as an individual.  For some it is the consideration of radiation versus surgery..for some it is age relative to treatment at all... for some, if the hearing level is less than 50 db, then certain options relative to surgery are typically eliminated as a consideration.  For some the size of the tumor figures into treatment..etc...Truth be told, the glass half full approach is to think that we are fortunate to have a condition with so many options to choose.

Here is the link. Maybe it will help you sift. It took me awhile too as the more I learned the more confused I became.  Then I made a choice and went with it.
http://anausa.org/forum/index.php?topic=5786.0

Kindest Regards,
Kate
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: marymomof3 on March 29, 2008, 05:47:09 pm
Hi Cindy - I was diagnosed less than 2 months ago and was consumed with making a treatment decision for myself.  I had Middle Fossa March 19th.  Maybe on the fast track - but I needed to move on once I made my decision.  I'm generally feeling ok now.  Although sometimes the headaches are horrible - I am totally available if you want to contact me to talk.
Mary
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: cindyj on March 30, 2008, 09:23:26 am
Thanks, again, for everyone's replies.  It really is a comfort to be able to talk things out here!

Phyl, the thread of your decision process was so helpful...really so similar to what, I guess, we all go thru.  I could just feel your relief coming thru the computer once you made your decision.  I will hope for that peace at some point.  And, Kate, your "decision making guide" is a great concrete piece of information that we should all use.

Mary, who did your middle fossa?  Where?  I have not found a surgeon around here that will do it (I haven't tried other areas yet).  Don't know that that's the answer for me, but as my hearing is still largely undiminished, that seems the better choice.  Sounds like you are doing pretty well - no facial nerve problems?  I commend you for making your decision and taking action so quickly!

Have a great day all - it's VERY cold here today - where is Spring?

Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: cindyj on March 30, 2008, 09:56:01 am
I'm on a "posting-roll" today! 

Ok, my apologies for this question.  I'm sure it has been answered somewhere before and/or is one that I should already know the answer to, having spent so many hours hanging out here and on the Cyberknife forum...anyway, I am still considering all options at this point, with slight to heavy leanings to GK or CK - I know that ultimately all AN's have the potential to push on the brain...mine is sitting RIGHT NEXT (kissing it) to it at this point - is everyone's?  Or are some still only in the canal and/or heading toward the brain?  I have read a couple of times that location can be as much a factor as size...if the AN is actually pushing on the brain, can one still have GK or CK?  Does that make it trickier or is it not a factor at all?  (See these are things I should have asked the docs, but I did not have my list like you all advise here!)

...guess I should have put this under Radio-surgery or pre-treatment options...sorry, this was handy

Thanks,
cindy
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: sgerrard on March 30, 2008, 11:17:52 am
Hi Cindy,

Not all ANs are close to the brain stem; mine is all in the canal. Brain stem radiation exposure is a primary concern in radiation treatment, so yes, location is a key factor. Deciding whether a particular AN can safely be treated with radiation without risk to the brain stem is a decision for an experienced radiation oncologist to make, based on the MRI and their knowledge of the radiation equipment.

Both CK and GK have very precise control over the placement of the radiation, so they can get very close to the brain stem without hitting it. I would not try to second guess the experts on this; if they say they can do it, then it is very likely to be successful; if they say they can't, then I would just accept that.

There is always a little bit of risk in any AN treatment, and there is nothing you can do to guarantee a particular outcome. In the end, you pick the treatment that seems most likely to produce a satisfactory result for you; then you sign up and hope for the best.

We had snow here in Portland over the weekend. March was in like a lamb, out like a lion. We like to to do things different in Oregon.  :D

Steve
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: Debbi on April 01, 2008, 09:58:26 am
Hi Cindy-

Hang in there - you'll find the right treatment for YOU.  Meanwhile, don't hesitate to recontact any of the specialists you have already seen to ask additional questions.  They should be willing to answer more questions.

MaryMomof3 had her mid-fossa with Drs. Golfinos and Roland at NYU - which is where I am having my tranlab done at the end of
April.  Dr. Golfinos is also head of NYUs GK unit.

As several others have already said, position seems to be as much of an issue in treatment as size.  Mine is mid-sized, but because it is pressing into the brain, everyone agreed that radiation was not a good option for me. 

Hopefully you have someone who can go to these appointments with you - it was a huge help having my husband there as he thought served as our offical note-taker.  And, a couple of times, I hit overload, so he was there to keep asking questions.  We used the sample questions from this forum and added a few of our own - then each of us carried our own set of questions when we met with the docs.

let us know how you are doing, okay?

Deb - seeing signs of spring in NJ
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: leapyrtwins on April 01, 2008, 11:01:12 am
Cindy -

Deb is absolutely right.  Don't hesitate for a second to contact the specialists you've seen with additional questions.  Having an AN is a big deal and making a decision is also a big deal.  There's so much to remember; and I don't know about you, but I thought of new questions almost every day.  The doctors will understand where you're coming from.

Even after I made my treatment decision, I called my neurotologist numerous times and made another appointment to ask last minute questions and clarify things in my mind.  I even asked him questions that my family had.  He was more than happy to address any and all questions and concerns.

Jan

Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: Blanche on April 01, 2008, 04:38:37 pm
Sorry to read of your diagnosis ,

I had an acoustic neuroma removed less 11 months ago and really just wanted to join this forum to share my experience of diagnosis, the horrid decision process between surgery or radiation and finally my surgery and life post surgery!!!!!

I went and met with several surgeons - all of whom gave me slightly differing opinions, one recommended gamma knife, one surgery, one watch and wait! but within those consultations certain things jumped out at me that were personal to what i wanted - for example i am very brave when i have to be but am a worrier before the fact, therefore for me personally the thought of regular MRI's i knew would weigh me down as would radiation as there would be no actual closure - as the surgeon said to me, some people can live with knowing the tumour is still in there and others can't but on the other hand it is less invasive. the consultant who recommended surgery told me there was a risk to my hearing and to my facial nerve but there would be closure - it was like aaaaaarrrrggghhhhh!

I agonised over wether to have gamma knife or surgery - i remember sitting in a pub with my friend and we would talk around the pros and cons and i would say "yep, i've decided - radiation!" then 2 seconds later say "No i've changed my mind i want surgery!" and believe me this went on like this for many days!

But, the other posts i read are right, you talk it over with your friends , family and in your own head and for a while go round in circles but then you do realise that one option has more pro's than con's (which ever option fits your life) and you do get to a point when you know you have made a decision.

In the end I decided that finding the best surgeon, with the most experience and then gaining his opinion was necessary. I found Prof. Sammi  at the INI in Hanover, Germany who specialises in AN and arranged to fly out having sent all my med notes for a consultation. He was fantastic and recommended surgery over radiation in his opinion. He told me that i would probly lose my hearing but he would not touch my facial nerve (i asked how he could be so sure - he replied "because i have done 3,500 of these operations). I left there feeling  confident in his ability which gave me confidence in making a decision.

In the end i sat and thought i cannot see into the future and know the result, all i can do is make a decision based on the things that were important to me (personally that my facial nerve was not damaged) and act on that information. That meant to have my surgery at the INI in Hanover, Germany.

I did lose my hearing in my left ear (as predicted) but he never touched my facial nerve!!! i woke and could move my face like normal. It was actually a very liberating experience - facing your fears, making a decision and being brave.

I was in the hospital for 2 weeks, stayed another week in a hotel in hanover and returned to UK by train. To put into perspective how good i felt afterwards - my husband and 2 kids (10 & 7) only came out for the third week once i was discharged (as i refused to disrupt the children - kept them in school with dad at home to normalise as much as possible) and in that third week we visited Hanover zoo twice!

I flew to Jamaica for a holiday 3months and 2 days after my surgery, was back driving after 3 months (running the kids everywhere) and was back in the gym and tai boxing after 5 months.

i know not everybody has such a positive story but i just want to say that life after AN whether surgery or radiation can go well and it is scary but you also gain a real sense of achievement that you have come through this and out the other side.

Apologies that i have rambled on but i was so happy to find this forum and i wish you all the best.
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: cindyj on April 01, 2008, 06:08:39 pm
Thanks everyone!  I still can't get over how great this site is...

Welcome to the forum, Blanche!  Thanks for sharing such a positive story!  It is very reassuring and great to hear(read).  Yes, I am wavering back and forth, back and forth.  Last week, I was quite certain I would not choose surgery - this week I am leaning back toward surgery... As a matter of fact, Jan, I am leaning toward Retrosigmoid...I think...But, I am not expecting myself to make a firm/final decision until at least the end of this month as I do have three more doctor's apptmts here in Atlanta.

Mary, hope your headaches have improved and you are continuing to heal and recover!

Til next time.  Was 76 and beautiful here this afternoon!  That's more like it  :)  Yea, I figured out how to put a smiley face on here! 

Cindy
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: sgerrard on April 01, 2008, 11:15:54 pm
some people can live with knowing the tumour is still in there and others can't but on the other hand it is less invasive

Hi Blanche,

I too welcome you to the forum. It sounds like you had a good tussle with the big decision, and made a good pick, and with a good surgeon. Does the vacation in Jamaica come as part of the package?  :D

Your quote above caught my eye, because I think that for many people, maybe me included, after all the data and stats and pros 'n' cons, it all comes down to which are you more comfortable with. Which bothers you more: someone poking around inside your skull with sharp instruments, or a dead tumor still inside your head? The answer to that question will often make the decision.

Hope you stick around. :)

Steve
Title: Re: Sorry, can I whine a minute...what to do, what to do
Post by: Blanche on April 03, 2008, 05:50:05 am
HI,

Thanks for the welcome!

Plan to stick arond and see how everyone gets on and offer any support that i can.

Wish i had found this site when i was shell-shocked with the diagnosis - you guys are so supportive and informed!!!!

It isn't always easy finding the lighter side to our situation but it really helps!

As good as i feel and as much as my surgery went really well, i still have tinnitus in my deaf ear and so much for my luxurious holiday to Jamaica post surgery - we got Hurricane Dean!!!!! Ya just gotta laugh!
 
i am always happy to answer any questions,

Wishing you all well

kind regards
Blanche