Hi Connie,

Check your email.  I've sent attachments of two of my appeal letters to you.  I'm glad to hear you're seeing Dr. Steinberg soon.  I'm not familiar with him, but according to this site, he's one of the best of the best.  I would definitely ask him what advantages a surgeon and hospital with specific experience with moyamoya would have versus without.  He sounds like an up-and-up guy so I would hope that honesty would rule over the "good old boys network".  It's always been my experience that doctors don't want to say anything negative about another doctor.  Anyway, he may be able to give you some ideas for an appeal.  With respect to Kaiser's insinutaion that you "give them a try first" - there's a perfect example of an issue you can make use of in your appeal.  Given their lack of experience with moya moya, it it really Kaiser's intention to let you be their guinnea pig?  Are you really expected to wait until their care fails you before they allow you care by a specialist?  At what cost to you?  Unnecessary progression of the disease, stroke, etc. etc.  I could go on and on but I'm sure you get my point.

Jane

Hi Connie,

Haven't heard from you.  Did you get my emails of May 13th and attachments of letters I wrote during my battle with our insurer? 

Jane

HI EVERYONE!!!!!!! this is a little long, prepare yourself.

Thanks Lisa for helping me out. I've been busy with school but I couldn't stay away too much longer. Sorry, I haven't updated.

Things did go really well with Dr. Steinberg, last week. I'm looking forward to the bilateral surgeries actually. Though my Kaiser doctor suggested a unilateral, Dr. Steinberg suggested both which would help to reduce the risks of hemorrhages and strokes. He also says he knows that Dr. Moayeri is a good surgeon (a plus) but doesn't know about her experiences. (If and when I talk to her again, I'll definitely apply DJ's suggested questions).

I don't absolutely have to have surgery yet, which gives me enough time, as Lisa explained, to research insurance and other funding. Dr. Steinberg says there might be some insurance alternatives: Medical? Other providers? He gave me a long list to search from. and they, at Stanford, really want to help me. that's so comforting!!

He also says my condition is well enough for me to work (I'm not sure if I can work the way DJ does though). Maybe I'll work so hard I can pay off the out of pocket surgery? (maybe not )

Best thing is, he also says after surgery, I'll be all better. Isn't that great? That makes me want to jump for joy. But then, I get smart and realize that won't help the brain.

Sorry, I took a little detour from health related stuff these past few weeks and haven't checked in. I took a big breath, and worked on my graduate thesis. Finished and am walking at the commencement this Saturday!!! Finally. I'm a master!!!! YAHOOOOOO!  ;

This week, I set out to continue my research for insurance and fundraising. (JANE-thank you so much for sending me your information. I sent you a message weeks ago, I guess it never went through. Please check your PM. and thanks HILLARY for your samples, LISAH for your peptalks and ideas, LINDA and JACK for your support and ideas-talk about moyamoya family).

I had a really big question for people. My friends have been researching fundraising options. If individuals or businesses are interested in making donations to help defray my medical bills and want a tax write off, is that possible? Do I have to go through a 501c3? Can a nonprofit set up a fund for individuals? What would that look like? What did others who received donations do? Does the new moyamoya foundation's work apply to this?

I'm feeling pretty good. Yesterday I applied for Blue Cross insurance and cried because I was scared they'd deny me. But that's only because I get like a baby when I start doing direct moyamoya work. No worries, I'm better and back on the board.

Sorry again for the delayed updates. But,THANK YOU for the continued support throughout the whole process. and Thanks for being a family to me and to my family. I've referred almost everyone and anyone to this board. Oh and did I mention that the moment I met the Stanford staff they referred me here? I said-I got that one covered!!!!

love you all very much,
connie