i wanted to add an additional question-since my hemorrhage i've been home. i was wondering-what are my physical limitations? i've been staying at home, relaxing, to heal from the hemorrhage and to prevent any other TIAs. what other things should i be doing?

i am really glad that i found this website. thank you dj and other members. it is really comprehensive and supportive. a couple of weeks ago, after having experienced 2 years of TIA's, i had a brain hemorrhage.  thankfully, i am recovering well. i have so many questions.

the neurologists,  at kaiser in redwood city, california, immediately following my angiogram, diagnosed me with moyamoya. they recommended upon discharge from the hospital that i rest and prescribed me with sodium pills because of my low blood pressure until i see them again in a few weeks. i've been trying to relax but am really prone to worry. (this website has gradually worked to alleviate some of that).

my doctors did a wonderful job (finally after years of failed diagnosis from other doctors) in diagnosing me and tell me that i will probably need surgery. i was wondering if anyone coiuld answer some questions:

1) what questions should i ask my neurologist and neurosurgeon (about their experiences with moyamoya or the type of surgery they'll be rendering on and for me)?

2) what constitutes a good neurosurgeon for the disease?

3) do you think that i should ask for a second opinion on the diagnosis? (even though all the symptoms are there?)

4)and also, i'm a little naive when it comes to health insurance issues. if i seek other advice from medical centers other than kaiser, what are my payment options?



i'm a graduate student living off of loans and bills are always on my mind but thankful i'm doing well.

that's all for now. in the meantime, i'm sitting here reading and reading about the disease. and i have great support from my friends and now from this website. yay.  thank you, in advance, for helping me.

Hey Connie,

Sorry you had to find us, but glad we could be here for you!

You have one of the most experienced moyamoya specialists IN THE WORLD right down the road from you at Stanford!  Here is the link to Dr. Steinberg's page: http://cgi.stanford.edu/~amlin/cgi-bin/find_specialist?action=get_doctor&doctor=garyksteinbergmdphd

His Nurse (Teresa) should be able to point you in the right direction with any insurance issues.  Her email is: teresab@stanford.edu

They are VERY receptive to people from this site so if you email them, expect a call back the same day!

EMAIL TERESA!  Tell her DJ sent you....  :)

[smiley=headbanger.gif]

Hey DJ

Joli at Stanford is the one who told me about your website..she said it was awesome, we came home and started reading all that we could that night, i also belong to a yahoo group and i can get the link for anyone who is interested, its called parenting children with moyamoya.  Did anyone see the show last night on the KRON station with Dr. Steinberg about moyamoya?  it was good, i'm working on getting a copy from a friend who recorded it for me, if anyone is interested i can see about making extra copies and mailing them...
Hillary :)

thanks dj,

i just e-mailed her. i'll update.

connie

hillary wrote on Apr 28^th, 2004 at 4:17pm:

Hey DJ Joli at Stanford is the one who told me about your website..she said it was awesome, we came home and started reading all that we could that night, i also belong to a yahoo group and i can get the link for anyone who is interested, its called parenting children with moyamoya.  Did anyone see the show last night on the KRON station with Dr. Steinberg about moyamoya?  it was good, i'm working on getting a copy from a friend who recorded it for me, if anyone is interested i can see about making extra copies and mailing them... Hillary :)

Hi Hillary!

Glad to hear they pointed you here.  Welcome to the family!

There is a link on the links page to the Yahoo group you mentioned.   ;)

I would LOVE to get a copy of the news out there last night!!  I can't find anything about it on their web site.

Let me know if you can get me a copy and I'll send you my address.

-DJ

connie1 wrote on Apr 28^th, 2004 at 6:11pm:

thanks dj, i just e-mailed her. i'll update. connie

Yeah Connie, let me know what you hear back.

she wrote me back, just as you said, and unfortunately said that it would be an uphill battle getting a referral from kaiser. i'm not sure what i should do. i'm thinking i should at least, after  my appointment with the neurologists i can ask about their experiences and ask members here what they think. how else could i pay for services with stanford? any ideas?

its been 2 weeks since my discharge and i have yet to have an appointment scheduled. is that a good sign?

I missed the KRON thing (didn't know it was on).  I live in San Jose, CA, so that's one of our local channels.  We should try to find out if they would make tapes available for a nominal fee or something.

Diane

Diane,

I've already sent KRON a message asking them if there's any way to purchase a copy of the story.  Hopefully I will hear something back from them soon!

8)

connie1 wrote on Apr 28^th, 2004 at 10:43pm:

she wrote me back, just as you said, and unfortunately said that it would be an uphill battle getting a referral from kaiser. i'm not sure what i should do. i'm thinking i should at least, after  my appointment with the neurologists i can ask about their experiences and ask members here what they think. how else could i pay for services with stanford? any ideas? its been 2 weeks since my discharge and i have yet to have an appointment scheduled. is that a good sign?

Connie,

Obviously, I don't know all of the details about your insurance and how Kaiser works, but that's an "uphill battle" I'd fight!

I do know, however, you are less than 10 miles from someone who's done over 200 surgeries on moyamoya patients, is considered one of the leading moyamoya specialists in the world and deals with moyamoya on a daily basis!  I know when I was diagnosed with moyamoya, I wasn't going to let anyone touch me who had to read a "how to" book when they were operating on my brain!  I'm not trying to imply the Kaiser doc's don't know what they are doing, but when it comes to something this serious, I would only settle for the best!

I looked at the Kaiser website tonight and noticed what it said about being referred to a specialist... "Services of a non-Plan specialist are covered only when authorized in writing by a Plan physician."  Maybe you could get one of the "Plan physcian's" to refer you to someone in the same zip code who knows as much as anyone in the world about what's going on and how to treat it?

Again, just my  [smiley=twocents.gif]

Connie -

Definitely fight!  I had to do battle with my insurance company as well.  Don't give in!  Send them as much literatature that you can and give them statistics!  Good luck!!

-Shari

DJ, i have a call in to my friend who taped it, should hear back tonight or tomorrow if she got a good copy, and soon as i get it, i will make another copy and get it off to you.  i'll let you know when i have it.

Don't give up just yet with the insurance referral.  My husband suffered multiple stroke and subsequently underwent STA to MCA surgery at UCLA.  We have a Blue Cross HMO and he was initially treated here in Orange County.  Basically we were told not much could be done.  We fought the insurance and won and he was and is currently being treated by the best at UCLA.  If I can be of more help with specifics as to appeal letters, etc., let me know.  I'll do my best to help.  California also has a Dept. of Managed Care which can intercede as well.  GOOD LUCK!

Thanks so much for help. especially Jane and DJ.

Before I ask Jane for sample letters of appeal and more information on how to pursue services elsewhere, DJ or anyone else, can you please help me with this.

I just found out, I have a consultation appointment next week on Thursday. with Dr. Nicole Moayeri.   Can't seem to find much information about  her. Are there resources to find out info?

If, I petitioned for Dr. Steinberg, is it too early to do so? How would I ask my physician for a referral? Can you help with that, Jane?

Thank you so much and best to all,
connie

Connie, check your PM's!

-DJ

Connie,

Haven't heard anything from you.  Did you check your private email?  I sent you a lengthy one back around mid May and attached some of the letters I wrote when I was doing the insurance fight.  Hope they helped.

Jane