Newly Diagnosed

[marystro]

Mark,

As usual, you reply is always informative and impressive.  I am happy and lucky to have your continued participation in this forum.

Most Sincerely,
Mary

[BevM]

Hi Mary!  I am newly dx as well and waiting to hear what the doctors recommend.  The waiting is hard and the decision on what treatment may be even more difficult.  I am a Kaiser patient and not sure what choices I will have.  I can't see the specialist until 7/19 but did get a CD to send to House for a consult.  I had high expectations that I would hear back from them based on what I've read in the forum.  They have had the MRI a week now and two follow up phone calls by me!! and still no call.
Mark is the one who got me thinking about the alternatives to surgery and as you continue to research I think you will find their are more people that are choosing CK or GK than originally thought. There is another website that has some information, www.cyberknifesupport.org .
Right now the ANA forum is providing the best support for me  as i'm in the waiting mode!  Good luck to you.

Bev

[marystro]

Hi Bev,

I am not sure Kaiser has CK centers.  Since it's our brains and if it were me, I would look at all the options first before costs.  I would then decide on the optimal treatment optoin.  From what I heard CK centers just increased by leaps and bounds last year or so.  May be Kaiser also has access to one.  You should check it out.

Given my conditions, I'd like to preserve my hearing, my facial nerves and avoid surgery for non-invasive option if possible.  That's why CK is what I am considering.  What are you tumor conditions?

Mary

[ppearl214]

Hi Mary,

Oh, we are certainly here, just as my CK mentor-in-crime, Mark, has noted.

It was once shared with me that many CK patients, post treatment, move along in life. Those of us that remain here still reach out for others that have questions about it... in my own way, it's me giving back for those that gave to me during the decision (and post-treat) process.  I have no regrets at all about my decision, I honestly feel I have done what is best for me (and my situation).  I feel that (for me) CK was the only true option.

Terrific team up at Stanford.  Mark is our poster child (don't hit me Mark!) for Stanford and Dr. Chang and the magnificient work they do up there.

Any and all questions you have about CK... oh, please ask away... either here or on the cksupportboard or on email or whatever.  No one is going to sway you one way or another... we will share our experiences, our issues, answer any questions.  We truly are here for you.

Be well and hang in there!
Phyl

(btw, if you want to see CK in action, you can click on my frappr link below in my sig line... there are pictures there of me having my treatment....and have a good laugh over the Hannibal Lechter pic!)

Phyl

[Jim Scott]

I am sure that surgery is recommended for me because of my age (44) and health (good overall). He explained that as I get older, the risk from surgery is higher, so if I'm going to have it, I should do it now while I'm young and strong. With radiation there is no guarantee that it won't come back. He said if I were in my 60's, then radiation would be the better option.  My AN is considered "medium" at 15mm x 17mm. I really liked his advice about waiting just a few more months, and having another MRI. I dread surgery, too. It is on my mind every second of every day! But even more than that, I dread the long recovery and the burden placed on my family and co-workers.

UPDATE (from Jim):

Remember - if you are in basically good health going into AN surgery (as I was), have a well-experienced neurosurgeon and a crack surgical team doing the AN removal, you may not have all that many recovery problems.  I didn't....and I'm 63 and had a 4.5 cc tumor removed via the retrosigmoid approach as radiation was not an option due to the size of the tumor.  I have the occasional (and apparently minor-league) 'dry eye' experience on the 'AN side' (mostly late in the evening).  A few eyedrops quickly alleviate this nuisance - which my neurosurgeon says will likely disappear within a few months. We'll see.   I had a bit of a struggle, at first, to regain my normal balance and my walk  but both are now basically resolved.  These surgery after-effects were my only real obstacles to returning to normalcy...and that is just barely 5 weeks post-op and a month after leaving the hospital! 

There is[/u]  the real possibility of a return to 'normal life', following AN surgery, for many (if not all) of us. 

Jim Scott     7/11/06

[Boppie]

I turned 64 a week after translab.  My recovery was excellent and quick.  I drove at two weeks.  I recovered without a hitch.  I am in very good health. 

[Jim Scott]

I turned 63 a week after translab.  My recovery was excellent and quick.  I drove at two weeks.  I recovered without a hitch.  I am in very good health.

There you go! 

Perhaps being 'older' is actually better in terms of a rapid, hassle-free recovery.  Being in (otherwise) good health certainly is.