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 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

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


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

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?

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)

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

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!

Connie, check your PM's!

-DJ