Never thought I woudl be a member

[Sherry]

Good Morning.  Three weeks ago I didn't even know there was such a thing as Acoustic Neuroma, and now I discover I have one.  Since being diagnosed, I have lived and breathed AN.  And I am becoming more overwhelmed each day.  I read your forum for three hours last night, going back and forth between your comments and Cyber Kinfe sites.  I had explored the option of GK, but didn't know about CK until I read comments on the forum.  Thanks for that.  I have visted the GK center in La Jolla and spoken with docs at UVA (Dr. Steiner) and Los Robles in Thousand Oaks (Drs. Young and Miller).  I talked to the Head Nurse at Memorial Herman in Houston last Friday.  They, of course, are true GK believers.  I'd like to talk to some CK docs.  Based on the discussion I read last night, I am leaning toward Stanford and Barrow.  If anyone has any ideas, suggestions, comments, etc., please let me know. 

I'm interested also in post treatment conditons.  I read from several of you that although you truly do walk out of the treatment just like you walked in, there are some concerns, such as loss of balance, headaches, fatigue, even some vision changes.  Not one doc I've talked to has mentioned any of this.  In addition, those of you who received treatment at Stanford talked about the steroids that you took afterward.  I had not been told about that either.  Any light you can shed on these issue would be greatly appreciated.

Questions are pushing to be asked, but I don't want to over write on my first post.  Thanks to any and all who can help.  And bless all who have been or are going through this process.

Sherry

[ppearl214]

HI Sherry,

I'm going to chime in first to say welcome! :)  OH, each and every one of us truly know that overwhelming feeling... coming to terms with it myself.

Your post here is terrific and yep, you certainly read the AN board for all you note. In your readings, maybe you picked up that Mark certainly knows the CK program at Stanford (Dr. Chang was his doc, who is also on the Cyberknife support board. Dr. Medbury and Shunberg also are quite active and knowledgeable there to help with any CK questions you may have).  Barrow is certainly quite good as well.   I'm east coast (Boston), so will be having CK done here locally at Beth Israel.

Like you, I wanted to know the post treatment potential outcomes (immediate and down the road). I can see you have been doing your reading and  have been told the same basics as you. Steroids (a popular one in use is Decadron) are typically only prescribed for a short period of time.  Each location has their own protocols in dealing with each individual situation, so when you speak to potential treatment practitioners, make sure you ask all the questions necessary.

I have found that -- regardless of what treatment plans I have been researching the past months, and trust me, I've been overwhelmed with my research -- ask all the questions you can. Don't think that any are too stupid (hell, last week, I even asked about hair loss for CK - btw, VERY minimal - maybe like an alopecia spot quarter-size, underneath), ask any and all questions you can.   A patient needs to be best armed with all info... to help make the best-informed decision you can for your situation.  As long as you have time to research, heck... research away. It's your head, not their's. Don't let anyone dictate to you and go with your gut after all the info you can find.

I know I rambled but all in all, I hope that once you do research, once you speak to all the dr's you can, once you know that the pit of the pit of your gut is pointing you in the right direction... go for it! :)  You will know in the soul of your soul what will be best for you... and know we are all going to be here to cheer you on.

Phyllis

[Battyp]

Hi sherry,
  I agree with Phyllis...you'll know in your gut when you are making the best choice for you.  Outcomes have no rhyme or reason so prepare for the worse and hope for the best is my motto.  How big is your AN? 
  Welcome aboard and sorry you've had to join out quaint little exclusive group.  Please know everyone here will help you in anyway possible.  We're all egar to share our knowledge to make someone else's path easier,

Michelle

[Joef]

Sorry to say, its the first question most of us had "what is Acoustic Neuroma? I've never heard of that before!" 

Have you had a MRI done?  if so how large is the tumor? .. if its to large for Cyberknife , you might what to talk to
"House" about surgery ... are you having any pre-op issues now? (like balance and headaches, lose of hearing)

welcome to "our" club ...ask any question you want! .. there are a great bunch of people here!! 

[Sherry]

Thank you all for your kind words and concern.  If I had to join a club like this, I can tell these are the right people to be associated with!  My AN is 2.1 x 2.5 cm, which, I've been told is excellent size for CK or GK.  I've had several docs look at my MRI, two local and two GK clinics.  I like the CK because of the freedom from head gear.  That truly petrifies me, and I have read some real horror stories about it.  I am not at all claustrophobic, so the mask idea doesn't bother me.  Having four screws in my skull definitely bothers me.  I can't find enough feedback to make me believe that you don't have to go through the head gear approach with GK to achieve the same result you get with CK.  If anyone had any ideas about this, please chime in.  I guess there probably isn't anyone who knows both procedures intimately, since we choose one or the other, and the docs seem to believe in their chosen procedure. 

It sounds like some of you have taken months to do research and make a decision.  Is that true?  What were your reasons for not moving ahead right away?  Just to get more info? 

I have completely dismissed the idea of invasive traditional surgery for my AN.  If I am petrified of the head gear attachment, you can imagine how I feel about open head surgery.  No way, as long as there are other options.  I am a very active 53, in excellent health, until I decided to have my head examined (as lots of people have always suggested I should!!).  I don't intend to let this slow me down, but truthfully, coping with the uncertainty, the reality, and the disruption this has caused in my normal ordinary life, it is hard not to get a little depressed.  Yesterday was the worst yet.  Anyone else go through this?

Thanks again for your concerns.  Look forward to more ideas.

Sherry

[ppearl214]

Hi Sherry,

Just read your recent post and figured I'd chime in.

Like you, I've opted for radio surgery (my AN is now 1cm x 9mm x 4mm).  Like  you, for me to weigh out GK vs. CK was VERY heavy on my mind. I know both are viable options and for me, it boiled down to a few factors (of course, everyone is different in their reasoning for their decisions).

1. Accuracy:  the data supporting the accuracy/pin-pointing of the growth was key for me. As my AN is still in the IAC, this was of utmost importance to me. Both treatments work for my situation, one accuracy was better than another

2. Headframe:  I hear you on that one. But, in speaking with my neurosurgeon (hell, she didn't want to cut me! Unheardof!). She did her internship in GK. She shared with me the headframe but all in all, it was not a major factor for me. The outcome of the treatment is what mattered, so I viewed the headframe as a "temporary discomfort" for a 1 dose treatment as the long term outcome was the importance.

3.  Single dose vs FSR:  For me, either worked.  Like you, I live a VERY hectic lifestyle (45, single income, with dog, works wayyyyyyyyyyyy too much, blah blah blah).  This, to me, is an individual decision as both are proven to work fine.

4.  Efficacy:  GK has much more data to show it's a viable, proven treatment. CK doesn't have the longevity of data but the data available is definately impressive.

So, all in all, I did quite a bit of research over all of these past months, met with soooo many medical professionals, discussed with surgical and radio-surgery patients, family, friends, etc.  Both treatments work. We can only hope that outcomes are positive all the way around but can't lose sight of reality either.   

OH, I can relate to your concerns but you know what is best for you. Said many times around here, go with your gut... and we'll keep feeding you chocolate to help the cause (and the nerves) as you deal with what you have to deal with. Great place here... seems we all know the feeling, ya know?

Hang tough!
Phyllis