Hi Kathy,

My 13 yr old son was diagnosed with Moyamoya last yr. We live in Philadelphia, Pennsylvania and had surgery done at the Childrens Hospital in Boston.

My son is covered by 2 different ins companies, (both are under Blue Cross) Keystone Health Plan East which is from my husbands works, and Keystone Mercy which is medical assistance from the state. My son has multiple disabilities.

We "battled" with Keystone Health Plan East for 3 weeks, went through 3 appeals, had my son's pediatrician and the neurosurgeons from Boston involved, and he was denied coverage each time. Since this is his primary insurance, we had to go through them first and we assumed his medical assistance would surely deny coverage also, that is why went through appeals. BUT, shockingly, his medical assistance did approve and cover everything!

The reason the main insurance denied coverage was because there was a neurosurgeon in my area (in network) that was able to perform the surgery. This was true, but we wanted to have the surgery done by experts in this field. Medical assistance never questioned anything.

I also must tell you, even though medical assistance covered everything he first time. My son ran into many complications and we were back in Boston a few times over the summer last year and now we are being billed for medical expenses for a couple of these visits!

Is there an experienced surgeon in your area? If not, you should not have a problem with them approving coverage. Have you spoken to anyone from medicare about this?

Karen

Thank you..I was just trying to get my taxes done before the 1099 came in the mail. I will call BCBS.Thanks for your help.

Thanks Karen. There is another Doctor in Boston at Mass General who does the bypass surgery but he has never dealt with the middle brain watershed shed problem. We are in the process now talking to BC/BS so I'm praying for the best result possible.

I hope things go well for your situation with your son and you are in my prayers also.

Best,
Kathy