New here, surgery next month...and scared!

[Sue]

I would suppose that they would recommend the radiation treatment via Gamma Knife, which is what I think House has there.  You might also consider talking with Dr. Chang at Stanford, who does CyberKnife.  This will kill the offending tumor, not remove it.  About the balance issues I have no answer for that, exactly.  You might be able to withstand a brief surgery where they would cut the balance nerve, but you'd have to ask your doctors about that one.  Try not to stress about this.  What will be will be and the doctors always will think of something to help you.  I hope!  You know, where there is a will there's a way.  Plan A doesn't work, there's always Plan B.  That kind of thing.   And there is vestibular therapy, too.  That may be of great help to you.

Your story sounds a lot like me, except I didn't have the extreme balance issues.  It took a year to get the correct diagnosis, tho.  So I sympathize with you greatly.  I'm sorry you are having such a tough time. 

Sue in Vancouver, USA

[kathylittlejohncobb]

Dear DLM,
O.K.  Here are the facts:  You are due to find something out in the next couple of weeks...you don't know what the doctors will or won't do.  Can't read or watch t.v.....lying on the couch......soooooooo.....here is your answer:  Music and books on tape!!!!!  Music, music, music, & books on tape of any kind that will engage your mind.  You know what?  Another fact (sorry!)  is that all of the stressing and worrying in the world won't change what your doctors will or won't decide to do.  So be kind to yourself....distract your mind with music, books on tape, conversations, phone calls, whatever it takes to engage your mind in any other way than worrying.  Is this easy to do?  No, not really.  Will it work?  Yes, really, it will, for those periods of time in which your mind becomes engaged in something other than AN will be a relief & friendly time to you/your mind.  I'm not saying to ignore your problems, just to give yourself some small vacations from them mentally. 
Keep in mind, too, that your House physicians are top of the line, and have faith that what they say needs to be done (or not done) is correct; their determination of how your case should be handled will be done not just on a professional level, but in a caring and compassionate way.
You have many people following your case and praying for you, so do take some time to let us know how you are doing (inbetween your "mental vacations", of course!)
God bless,
Kathy 

[DLM4me]

Kathy, I see what you're saying, but here's a little more insight into my situation: I've had SO MANY operations I can't even remember them all (without really thinking about it).  Just in the past five years I've had...let me count...seven, I think.  And that doesn't even touch on prior to that.  Dating back to when I was 21 and nearly died from gyn problems, I've had illness after illness, surgery after surgery, to a point that I really didn't think I could handle it if ANOTHER one became necessary...and here we are.  All of the prior operations were necessary, including several that were emergencies.  Every time I've had surgery it's taken more of a toll on me; recuperation has been longer and more difficult each time; depression (which is a lifelong problem anyway) becomes much worse in the post-op period as I struggle to bounce back; I've also become prone to infections.  So let's just say I don't feel terribly upbeat right now!  The reality for me is that while I dread going through yet another operation...especially brain surgery!...it's even scarier to think of NOT having it, because I certainly can't live like this.  Also, Dr Brackmann stated quite emphatically that I am not a good candidate for gamma knife.  So I can't help but wonder "what if?"

[mk]

I was wondering why Dr. Brackmann said that you are not a candidate for GK/CK. Based on the size that you mentioned, it seems that you are well within the acceptable range for radiosurgery. Unless there is a major issue like brainstem compression (again, probably unlikely with your size). There are many doctors who are very much anti-radiation. Before you make a decision you may want to seek a second consult on this, perhaps with Dr. Chang at Stanford.

Marianna

[sgerrard]

One of the classic (old school) criteria for radiation treatment was always "not a good candidate for surgery," so it does make you wonder why radiation is being ruled out. It may be because balance issues are not addressed by radiation treatment, and that is clearly a dominant symptom for DLM4me.

My concern here is that every case of recovering balance I have read about, after surgery or otherwise, has involved physical therapy and movement. I think the mobility issue is really at the top of the list; my gut says DLM4me, you have to get moving, one way or another. Canes, crutches, a walker, something. I think it is quite difficult to overcome a balance issue without moving around on a regular basis. Surgery can cut the bad balance nerve, making it easier for your brain to adjust, but you still have to go through some physical therapy and activity to get back in business.
 
I hope the pre-op consultation goes well, and that you get a good plan in place. If you are not cleared for surgery, there are alternatives. It does not sound like it is going to be smooth sailing, but there will be a way forward. We will be here every day to encourage you along that path.

Steve

[moe]

Dear Grace,
Wow, you do have so many issues. I like your name GRACE.
 God will give you the grace to get through this. And the power of prayer is amazing- we all pray for each other-we all think it does make a difference -

Evidence proved us right with a fellow AN friend who's husband had lung cancer which was totally gone after the surgery (OK they took 2 of his 3 lobes out, but there was not a trace of it anywhere else. That is another story- let's focus on YOU).

I agree with the CD/music/books on tape/meditation. Calms the mind......
Trust in God and trust in the good surgeons you have. We are here for you.
Maureen

[leapyrtwins]

I was wondering why Dr. Brackmann said that you are not a candidate for GK/CK. Based on the size that you mentioned, it seems that you are well within the acceptable range for radiosurgery. Unless there is a major issue like brainstem compression (again, probably unlikely with your size). There are many doctors who are very much anti-radiation. Before you make a decision you may want to seek a second consult on this, perhaps with Dr. Chang at Stanford.

Marianna

I totally agree with Marianna.  Doctors, like everyone else, can have biases and sometimes those biases steer them away from treatments that they don't personally perform.  Just because they don't do a certain procedure though, doesn't mean it isn't right for you.

You need to educate yourself and look into all possible treatment options.  In the end you may or may not choose surgery, but at least you will have made an educated decision and done your research.

Dr. Chang would be an excellent choice for a second consult.

Jan

[Kaybo]

I agree with so much that has already been said - especially with STEVE and the comment that in some form or fashion, you have to GET MOVING!  It is easy to talk yourself into how bad it is but if you don't take charge of you to make your life better, who will?  I have had more surgeries than I can count the last few years too - they may not have been as big & bad as yours, but have certainly taken a toll, none the less.  I think that anyone that knows me would tell you that I haven't had all "sunshines & rainbows" but I CHOOSE to have a good attitude - never say die - this IS NOT going to get the best of me!!   You can do it - we are here to help & cheer you on!  Try to think positive about having the surgery instead of what could happen to keep you from getting it!

K
PS -MOE loved your comment too!

[kathylittlejohncobb]

Hi again, DLM,
I am here to bug you again!   
I agree with Steve, Maureen,Kaybo, etc.  Although facing AN can be very difficult at times, and though some have larger crosses to bear in life than others, we all have to choose how we handle things!  Be proactive in finding ways to alleviate your mind from your AN worries, at least intermittently.  Rely on those music cds, books on tape or cd, call some people to while away the time, etc.  And keep in mind that you have so many people cheering you on; imagine us in the background all rooting for you!
May God bless you in many ways,
Kathy
P.S. Believe it or not, many of us become grateful that we had an AN & not something worse!


   

[mimoore]

Welcome, your story sounds oh too familiar. We are here for you.
Knowledge is power... empower yourself. Research and ask tons of questions.
Michelle