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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › MRA SHOWS NO BLOOD FLOW

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MRA SHOWS NO BLOOD FLOW (Read 3543 times)

debbie

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xxxxxoooooooooo

Posts: 15
livingston, USA, usa, CA, California
Gender: female

MRA SHOWS NO BLOOD FLOW
Jun 1^st, 2006 at 9:06pm

I HAD MY 1 YEAR FOLLOW UP MY NEURO DID AN MRA WENT TO SEE HER TODAY SHE SAID THERE IS NO BLOOD FLOW ON MY RIGHT SIDE SHE CANNONT SEE EITHER BYPASS AND DOESNT KNOW WHAT TO TELL ME SHE IS NOW TRYING TO GET ME INTO DR STEINBERG. MY ORINGNAL SURGERY WAS DONE BY DR LAWTON BECAUSE MY INSURANCE WOULDNT COVER STANFORD BUT WE R GONNA TRY AGAIN IF ANYONE ELSE HAS BEEN TOLD THIS OR BEEN TRHOUGH THIS PLEASE LET ME KNOW

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Mar

Ex Member

Re: MRA SHOWS NO BLOOD FLOW
Reply #1 - Jun 2^nd, 2006 at 7:54am

Hi Debbie,

I don’t know your specifics; I can only speak of a similar experience with my family. When Mandy and her family moved to GA, they had her follow up and MRA done there in GA, with doctors’ we were told have experience with MMD. They too were told she had a 100% blockage and no blood flow after her bypass surgery, only to find out it was the lack of experience treating MM the disease and not realizing there would show a blockage of the by-pass artery. Total lack of knowledge treating MMD. So they flew Mandy back to Stanford to a MM expert, Dr. Steinberg, only to find out she was fine. In fact with excellent blood flow.

This was a perfect example of why we emphasize a MM specialist who has experience not only in doing the surgery, but also treating the disease and follow up care.

I don’t know if it’s the same in your case Debbie, I pray that it is and that you too have a good blood flow, but again, this is another reason I have to stress the importance of having a doctor with true experience in treating and managing this disease.

You’re in my thoughts and prayers. Please keep us updated.

Mar

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Lore

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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: MRA SHOWS NO BLOOD FLOW
Reply #2 - Jun 2^nd, 2006 at 8:25am

Hi Debbie,

Mar is so right about a MMD specialist. Mandy's case is a perfect example why one with MMD MUST have the opportunity to see a doctor who specializes in MMD like Dr. Steinberg.

Your insurance company must take into consideration MMD is a rare disease and there are really only two MMD experts in the U.S. and they are Dr. Steinberg at Stanford and Dr. Scott at Boston. Both of these docs have literally several decades of experience dealing with and treating MMD. I would absolutely fight the insurance company on this. You may want to have your doctor share Mandy's experience with the insurance company to make a point. We're not talking the "common cold" here. This is serious stuff and needs to be considered as such. If your insurance company values human life, they will do the right thing and allow you to see a MMD specialist.

Can you imagine what may have transpired if Mandy hadn't gone to Stanford? I'm here to tell you that probably an unnecessary surgery would have occurred. That not only could very well have been devastating to the patient and family but that would cost a tremendous amount of unnecessary money. Does the insurance company want to pay for an unnecessary surgery and put you through something that may not need to occur? I don't think so. Like I mentioned, fight the insurance company to get to Dr. Steinberg.

I will keep you in my thoughts and prayers and please keep us posted.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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kotipup

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: MRA SHOWS NO BLOOD FLOW
Reply #3 - Jun 2^nd, 2006 at 9:06am

Debbie,

I wholeheartedly agree with Mar and Lore on this issue, and just wanted to add that you can get in touch with Dr. Steinberg's office and have your MRA sent to him right now. He can look at it and give you an opinion at no charge...if the films were sent overnight today, you might hear back from him as early as next week. If Dr. Steinberg beleives that another surgery is called for, then you can work on fighting your insurance.

I am glad that your neurologist admits to being at a loss about the MRA studies, and that she is following up with Dr. Steinberg. I would be proactive, though, and make sure he gets a copy of your films ASAP.

Good luck!

Jenny

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debbie New Poster Offline xxxxxoooooooooo Posts: 15 livingston, USA, usa, CA, California Gender:	Re: MRA SHOWS NO BLOOD FLOW Reply #4 - Jun 2^nd, 2006 at 8:58pm thanks for all the good advice I faxed my report to Dr Steinbergs office today already had a call on my answering machine to call them back I will make sure i do that first thing Monday morning.
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debbie New Poster Offline xxxxxoooooooooo Posts: 15 livingston, USA, usa, CA, California Gender:	Re: MRA SHOWS NO BLOOD FLOW Reply #5 - Jun 4^th, 2006 at 11:39am Just a quick update my insurance denied it so now i am off to appeal it. I am determined to see Dr Steinberg, just dont know how they can deny something so nesscary. Ill keep you updated
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Lore MM.com Benefactor Offline My brother Kevin (Cubbie) has Moyamoya Posts: 819 Delaware, USA, usa, 419, 133, OH, Ohio Gender:	Re: MRA SHOWS NO BLOOD FLOW Reply #6 - Jun 4^th, 2006 at 12:06pm Hi Debbie, Looks like you are making progress. What is the name of your health insurance company? What is their reason for the denial? Are you appealing the insurance company denial or is your doctor? What backup documentation are you submitting with the denial? Hugs, Lore
Back to top	"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson IP Logged

debbie

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xxxxxoooooooooo

Posts: 15
livingston, USA, usa, CA, California
Gender: female

Re: MRA SHOWS NO BLOOD FLOW
Reply #7 - Jun 4^th, 2006 at 10:13pm

LORE if you have any suggestions let me know i am calling my insurance for an emergency appeal tomorrow morning it is health net the reason is it is an out of network service and that is not avaible unless it is an emergent nature. so any questions i should ask let me know or any information you can give to help fight this please feel free thanks

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