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New to the group & confused about financial op (Read 7798 times)
Lobsan
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Albuquerque, USA, NM, New_Mexico
New to the group & confused about financial op
Jan 22nd, 2008 at 7:29pm
 
Hello MM Family,

I've been reading the message board for a two days.  On Jan 14, my gf was diagnosed w/ MoyaMoya (the report said consistent w/ moyamoya disease) .  We have sent her mri image cd to Dr. Steinberg yesterday, now waiting for his opinion.   In the meantime She has appointment w/ Dr Yonas at Univ. of New Mexico Neurology dept. regarding the Lumbar Puncture that was done on her last sat Jan 26.
Can you guys please direct me to where we should go to get the financial paper work ready, as she is a student and recently had to quit her job because of involuntary movement in her left hand and some numbness in her left leg.  She currently is under UNM Care plan but i'm afraid as with many she will need to be treated by Dr. Steinberg at Stanford, CA and because of this i'm very confused as to which health care to apply for? Medicare or Medicaid.

I did read LishH's thread readring Medicare not covering By Pass surgery but Medicaid will but i've also read that Medicaid will only cover emergency? what does this mean?

Thank you all for this very informative message board,
Lobsan

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Reagan
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Lee's summit, USA, usa, 302, 159, MO, Missouri
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Re: New to the group & confused about financia
Reply #1 - Jan 23rd, 2008 at 6:32am
 
Lobsan,

I'm new to this and am learning about the financial portions right now. Your reaction was mine, how are we going to pay for this. However, Stanford has a great social work department that will be more than happy to speak with you regarding your financial situation once your receive Dr. Steinburg's recommendations. I don't have experience with medicare or medicaid from this disease standpoint. We have private through my husbands. Others may know what this means, but my suggestion would be to speak with the social worker of wherever she decides to go for treatment. This way you don't have to waid through this all alone.

Sincerely,

Reagan
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Lore
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Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: New to the group & confused about financia
Reply #2 - Jan 23rd, 2008 at 7:58pm
 
Hi Lobsan,

If your girlfriend is uninsured and has no income, she is most likely eligible for Medicaid. She has to apply through her local Medicaid office.

To get Medicare, your girlfriend would have to apply and be considered totally disabled and that is a long drawn out procudure that can take several years.  Most people are turned down the first go around. Plus, Medicare does not currently pay for the surgical procedure performed for treatment of moyamoya.

Reagan has given you good advice. Also Stanford has a financial aid page on their website.

Best wishes,

Lore
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"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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Lobsan
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Albuquerque, USA, NM, New_Mexico
Re: New to the group & confused about financia
Reply #3 - Jan 25th, 2008 at 12:19am
 
Reagen & Lore: thanks for your reply!

I'll go ahead and take your advices & apply her for Medicaid...(she is unemployed & w/o ins...) will keep you updated

Much appreciated
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tkalbrier
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Nowata, USA, OK, Oklahoma
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Re: New to the group & confused about financia
Reply #4 - Apr 6th, 2008 at 10:11pm
 
I joined this group back in October but I have been trying to trust my local Dr.s  Lately I feel they are all giving me the brush off.  My daughter was diagnosed on September 15, 2007 at that time I was told by the neuro that there was nothing more to do.  I asked my primary Dr. who said if the neuro thinks there is no more to do there probably is no more to do.  We are experiencing trembling of both hands, extreme teeth grinding and toiliting accidents where I am not sure she is feeling the sensation to go!  They want me to treat this as a behavior problem and start disciplining for it.  When I asked my primary Dr about Stanford he was very negative, he said I probably couldn't get her in there and if I did they would not take her Oklahoma Medicaid card.  I am happy to have stumbled on this board tonight because now I know to check out stanford's site and give them a chance to accept or deny us.  Jasmine is just 14 and has Down Syndrome, I have also been led to believe that this often accompanies DS and that she will always be at risk.  Thankyou for this board now I know where to ask my questions!
Tami
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Tami, Mom to Jasmine (13 DS & MM) and Ryan 11/28/82-11/28/99
 
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Re: New to the group & confused about financia
Reply #5 - Apr 7th, 2008 at 12:57am
 
Hi Tami,

I don't know your insurance situation nor do I know all Jasmine's specifics, but I do know that many doctors do NOT know enough about this rare disease and often give poor advice like I've just read. PLEASE, PLEASE do not disciplne her for problems that may not be her fault. My 20 year old niece never showed any obvious MM symptoms prior to her strokes or diagnosis, and then one day she just urinated with absolutely no control at all. We rushed her to the hospital and later that day she suffered a stroke and many more severe strokes followed. PLEASE first get an opinion from a MM expert before taking the advice from these doctors!!

If an out of state MM specialist does not take your insurance, try and find a neurosurgeon with MM experience who does take it. Anyone I've ever spoken with who had a successful outcome fighting this disease had to be extremely aggressive and fight for it because of the lack of knowledge in the medical community. I admit it may not be an easy road but there IS help out there!! Jasmine has a excellent chance for a successful future IF the proper approach is taken and IF she has a doctor with MM experience.

tkalbrier wrote on Apr 6th, 2008 at 10:11pm:
Jasmine is just 14 and has Down Syndrome, I have also been led to believe that this often accompanies DS and that she will always be at risk.

What were you led to believe she would always be at risk for?? If her MM is treated properly and she gets the proper blood flow to her brain, that lessens the chance of a stroke and any brain damage. Yes, Down Syndrome is often associated with MMD, but we've seen many successful outcomes with DS and MMD, with the proper treatment. Please do not be mislead by your doctors without at least getting an opinion from an experienced MM surgeon.

I pray that Jasmine gets the treatment she needs. You both will be in my thoughts and prayers.

Please keep us posted.

Mar
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mc823923
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Baton Rouge, USA, usa, 345, 271, LA, Louisiana
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Re: New to the group & confused about financia
Reply #6 - Apr 7th, 2008 at 6:58am
 
My 16 year old daughter Annamarie also has down syndrome and she is on medcaid in Louisiana.  We leave tomorrow morning for Stanford for surgery on the 15th.  It was a long ordeal, about 3 months, but we worked with the state and finally got approval for the surgery.  Then Stanford had to have a contract with the state.  But long story short Stanford does take out of state medicaid. The people so far at Stanford have been great.  The first step is to get the medical records to them so Dr Steinberg can see them and give his opinion.  Once that is done the ball starts rolling.  Its a lot of leg work for you, but beleive me it can happen.  Hope everything goes well for you, keep me posted.  My thoughts and prayaer will be with you. 

Good luck,
Margaret
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Margaret
 
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dix geronemo
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Re: New to the group & confused about financial op
Reply #7 - Aug 16th, 2009 at 10:15pm
 
Medicare not covering By Pass surgery but Medicaid will cover it but that Medicaid will only cover emergency? how is that?


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Christie
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daughter with moyamoya

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Burnside IL
Re: New to the group & confused about financial op
Reply #8 - Aug 18th, 2009 at 9:08am
 
My daughter is 35 and about 11 months ago I started the legwork to get my daughter to Stanford. Sept 7th at first diagnosis, her local Neurologist told us there was no hope and surgery wouldnt help. I asked for a referal to Stanford. After overnighting films, we immediately heard back from Dr Steinbergs office that surgery was needed. My daughter just started receiving MO medicaid, of course they weren't going to pay for surgery in CA. I started calling State Representatives, Senators, whoever would listen. By Oct 27th, we were at Stanford with approval for surgery. It happened very fast for us although at the time it seemed slow when you are waiting for phone calls. I signed my daughter up for disability after the surgeries bacause she had strokes while at Stanford. They had a hard time approving her for disability based on MMD because nobody knew about the disease, so I asked them to focus on the strokes and she was approved within 30 days. I realize not all states are the same but I really thing think the State Reps are the way to get anything done fast. In our case it was. Good luck and please don't take no for an answer! I was told NO over and over,
Christie
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1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes
 
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