Anyone have treatment experience with Kaiser, Redwood City?

[andreal]

Hi all -- I'm 4 weeks into this crazy dream, trying to figure out what to do about my tumor.  I'm 59, tumor is 20 mm x 18 mm and up against my brain stem.  Dr. Victor Tse, the Cyberknife doc, said he'd prefer to see a nice margin around the tumor, separating it from the brain stem, but that's not the case. He's recommending CK soon rather than after a 6 month pause followed by a 2nd MRI (I've only had the one that diagnosed me exactly a month ago today) because of the size which he called large.  I know these things don't grow quickly.  But I've gone from asymptomatic to tinnitus and facial numbness in 4 weeks.  Balance problems for 2 years, hearing loss for 6 months. I'm still at 88% speech recognition on that side so I still have pretty good hearing.  On the other hand, Allen Efron, microsurgeon, called the tumor small.  And the third doctor I consulted with at Kaiser, Dr. Kung (head and neck), called it medium.  It's so subjective.  Who out that has been treated at Kaiser? I'd love to hear your experiences.  This is all pretty scary.  Thanks, everyone.

[CHD63]

Hi andrealiguori and welcome to this forum .....

You are so right to call this a crazy dream in the initial time following diagnosis.  Try to take a step back and relax ..... then continue on with your treatment option research.  If you have not already done so, send for the ANA's free informational packet.  It contains a wealth of accurate information on treatment options, etc.  Look at the home page of the anausa.org web page, at the bottom.

I personally have not had any experience with Kaiser, but others on here have so they can comment on that.  If memory serves me correctly, most of the people I know on Kaiser are from California.  If that is where you live, you are fortunate to be near several top medical facilities treating specifically acoustic neuroma.  Dr. Steven Chang at Stanford, Dr. Rick Friedman at USC, and Dr. Marc Schwartz at House Ear Clinic (in LA) are all top-notch physicians who will give free consultations if you send them your MRI.  Many of us flew from across the United States for treatment with one or more of these doctors.

This is one time you want treating physicians with vast experience treating specifically acoustic neuroma, not just any brain tumor.

Best wishes and let us know how you are doing.

Clarice

[john1455]

I had Kaiser insurance when I was diagnosed with an AN very similar to yours in 2013 and I went to Kaiser RWC for a consult with Dr Tse. Kaiser RWC had just installed a spanking new CK machine at the time and Dr Tse was made the head of the dept. Please Private Message me if you want my personal opinion of my experience. What Clarice stated above, "This is one time you want treating physicians with vast experience treating specifically acoustic neuroma, not just any brain tumor" is excellent advice to follow.

I was 64 at the time of my diagnosis and I decided to wait until I was eligible for Medicare so that I could be treated by Dr Chang at Stanford. As soon as I turned 65, I made an appointment with Dr Chang's team for CK. It was the best decision I ever made. I am now 2 years post CK and I feel the same now as prior to CK.

[andreal]

Thank you for your replies, Clarice and John. Sounds like it would be wise for me to seek input from Chang; I'll look into how to get my MRI in his hands for a consult.  I don't think Kaiser would ever let me go out of network and it does seem criminal to be so close to Stanford and not have the ability to use them for treatment so I will be looking into this. I would like to have a high level of confidence in the team going into this and would certainly prefer CK to the surgery option if possible.

[john1455]

You are correct. As long as Kaiser has a CK unit of its own (and they do in Redwood City), you will not be allowed to go out of network. You can contact Dr Chang at sdchang@stanford.edu for instructions where to send your MRIs for an email consult.