I got my bill for my recent stay, with the aneurysm, its almost 210,000$$$ and i dont know how much my insurance is going to pay, all i can do is pray, they pay for a good portion of it, i am going to have claim bankruptcy because my bills are piling up, and its so stressful not knowing how i am going to pay for my medical bills, does anyone else, have crappy private insurance?? i wish  we had better insurance, but like most Americans , we have bad insurance, that doesn't pay for much, just one more stress factor, that i (we mm'ers) have to deal with. Does it ever seem to get better, or what, when its not one things its anther, totally bummed tonight, I'm having one of my bad nights again, where i am just totally scared something gonna happen, i just cry and cry, this totally bites, having mm is so crappy 

I'm not sure how much our insurance is going to pay either.  Our bill for the angio was $45,000 and avgerage $11,000 for three MRI's....I am choosing not to worry about it for now.  It takes so long for the insurance companies and doctors to get all the paperwork filed that it could be a year before I get a bill...I'll worry about it then.  For now you need to worry about getting better and nothing else!!!!

I agree with Mark about the fund raiser...have you considered contacting your local newspaper and TV stations?  Talk to them about doing a story abouth this rare disease.  Maybe you can get some financial help andget word out about Moyamoya.

PLEASE take care of yourself and TRY not to worry.

Wow...It's really scary to hear these horror stories about the insurance companies.  I'm also in an awkward situation and would love some advice.

I'm an American but living in Stuttgart, Germany.  I work for a US company that has great insurance.  I had unilateral MM on my left side but I've been told by my doctor that the disease is developing on my right side.  Unfortunately, the doctors will not/can not tell me when I will need another operation.  My first operation was $250,000 and all I had to pay out of pocket was $1,000. 

But here's the problem - I was diagnosed last year with livedo riticularis, a skin disease that turns my skin purple in the cold.  There is no medication or cure...all you can do is move to a warmer climate.  I've been away from the States for 10 years now and actually miss it and want to move to Los Angeles (where it will be warm).  I'm scared to move because I can't find a job in LA, while I'm here in Germany and I can't leave Germany to go find a job in LA or I won't have insurance. 

Any suggestions, I'm feeling really lost at the moment.  I just keep begging the hospital to do an operation, so I can get on with my life and move back to America.  I've already looked into COBRA but they can't seem to figure out which insurance plan I would have.  By law, people who go on to COBRA are entitled to keep their insurance plan and just pay the employers portion but they don't know how I would be able to keep an international plan when I'm not living out of the States. 

Thanks!
Monica

Hi Lore,

No, I didn't get a notice from Cobra yet...I just made an inquiry, since I haven't given my company my resignation letter yet or told them that I was offically leaving.

I will look into COBRA again and have them try to put their answer in writing, so I can understand it better.

I'm also debating taking a risk and not having insurance coverage at all.  I know this sounds stupid but I feel so desperate to move back to the US.

Has anyone heard of a doctor doing an operation on both sides for a MM patient that only had MM on one side of the brain...or MM not fully developed? 

One moyamoya.com member sent me a message that she had both sides operated on when she was only showing on one side but, unfortunately, she is no longer a member and I was unable to ask her more about it.

Any thoughts?

Thanks for your help Lore!

I'm going to be a little more pushy at work and insist that our benefits coordinator get an answer out of COBRA. 

Have a good day!
Monica

have you checked with the hospitals financial services dept?  Sometimes they have compassionate care funds or financial aid to help with bills  t may be non profit stuff not sure what it would be listed under at every hospital.  Our hospital has this kind of plan it is seattle children hospital my daughter is 2 and they have helped pay what our insurance won't cover If we did not have this we would have  maxed out a long time ago. Izzy has had about 12 procedures one open heart surgery 2 heart cath surgeries 4 airway surgeries ct scans with angiograms and pacemaker surgeries.  we did not apply at first because we did not think we would qualify  but she has needed so much and sees so many dr we would not be able to keep up.  i think they approve you based on your needs medically and financially. I would look into it and see if the hospital has someone who could help you find solutions.

mlgohsman,
I am happy to hear that everything worked out nice. my bill was about the same and I was in the same boat where all I had to pay was $1000.00.  I hope you are feeling well.
Becky