masonsmom,

I am so very sorry to hear about  your dilema.  Many have had similar problems in the past.  There are ways that a person can petition the state that covers their medical expenses (Illinois in your case) and get coverage for out of state medical care.  I will need to make contact with a couple of people to see how this process would work for you, but it is unfair when the state that you live in does not provide the care that you need.  I am not promising anything, but I will check and get back to you over the weekend.  This process can be long and daunting, but it is worth looking into.  

Hang in there, you are not alone.  We will all continue to pray for you.

I agree with your decision to not go to Dr. Charbel.  He was the one that diagnosed my moyamoya but I went to Dr. Steinberg for treatment.  We will find an answer for you.  If you would like to contact me other than this web page you can e-mail me at
t.oneill467@comcast.net

I am praying for you and a resolution to this problem.  

Tracie

Masonsmom,
I sent you a personal email about this.  I also spoke with a friend, Michelle, who also was not "taken" by Steinburg..and she is planning on emailing you also.  You truly are not ALONE!  Several of us were in this same boat and we are all still among the living!   [smiley=engel017.gif]
God Bless You
Michele    

Once again thankyou EVERYONE  for your responses and input.  I truely appreciate your help and support!

masonsmom,  

Sorry you have MM and are having insurance issues. It should not be that way. I had indirect surgery (EDAS) performed by Dr. Fady Charbel at the U of I Chicago hospital in Oct. 2000. I've had no problems since and the post op testing showed improved blood flow. I've only had the indirect procedure done since there were no recipient vessels large enough for a direct bypass.

I hope all goes well for you.

Russ

I think many of you are not stating the facts correctly, that’s very unfair. It isn’t that Dr. Steinberg won’t see you or take you; it has absolutely nothing to do with Dr. Steinberg. It’s insurance issues and policies of the hospital. A doctor has no control of your insurance or whether the hospital they work out of accepts yours medical coverage or not. I think you should at least be fair and honest in a post when mentioning a specific doctor’s name.

Tracy,
One thing I would suggest if you are feeling uncomfortable about the type of surgery is to ask Dr. Steinberg if he would be willing to call Dr. Origitano.  I have heard that Dr. Origitano is a very good surgeon, but I don't know about his experience with mm patients.  Perhaps Dr. Steinberg could consult with him and explain why he thinks that you would benefit from both direct and indirect surgery.  Just a suggestion.  Of course you have to do what you feel is right for you and for your family.
Tracey

I agree with Tracy!!! From what I've heard I think Dr. Steinberg would be willing to do that. That seems like the best plan to me. Good Luck.  
                                                                     



Danielle

wrote on Jul 10^th, 2009 at 10:12pm:

IIt’s insurance issues and policies of the hospital. A doctor has no control of your insurance or whether the hospital they work out of accepts yours medical coverage or not.

Agreed.

Hopefully one day there will be NO issues as to what insurance you have or who will take what.  THE factor will and should be "they need surgery, ok let's do it!".  Not only for Moyamoya patients, but ALL suffering individuals.

When you live in a society driven by $$, you have to be one step ahead!  Health takes a backseat to everything else, sad.

We wish you the best of luck.  You have been, and will continue to be in our prayers!

I am not sure how it works in Illinois, But in Michigan I contact our Govenors office of Constituients and found the hoops I had to Jump through to get Robert covered for out of state treatment it was a process that took about 4.5 months with constant reminders to keep him on the top of the list. It was a different time ecnomical speaking for the country, but Stanford was extremely co operative in the negotiating process it was the state that was harder to get to budge

Mike

I too went through an act of congress. Everyday calling got approval and negotiations approved in less than a month. Work hard and keep calling. Just don't take no for an answer!
     Christie