Hello,

My name is David and my wife was diagnosed with MM a few weeks ago.  We have been in contact with Dr. Steinberg and are planning to have two surgeries sometime in April.  I am very fortunate to have a working situation that will allow me to leave and accompany her to CA for the surgeries.

Here's my situation.  It is almost certain that the insurance, Tricare (I'm in the Army), will cover the costs of the surgeries, but I am possibly facing a situation where they will not provide the costs associated with airfare, hotel, etc.  Actually it IS certain the will not cover these things.  But there is still a chance that the Army will cover these things; I am in the process to try and make this happen.

So my question is this:  How has it worked for you all who have gone through this in the past?  Did your insurance pay for all of it?  Or did you have to suck it up and pay for a hotel for three weeks?  I'm just getting a little concerned that I may have to foot the bill for this.

Thanks in advance for any replies.

David

Hi David -

Sorry that you had the need to find us, but glad you did!  I had my surgeries in Boston with Dr. Scott (I was an adult at the time, even though Dr. Scott is a pediatric neurosurgeon).  Anyway, I live near Philly, so my parents and I were able to drive up to Boston...but my mom did stay with me during the duration - in a hotel, foot the bill herself.  I don't think many insurance companies will pay for hotel and airfare, etc. unless you work for the government (no, it's not a dig against the government!).  I would look in to Angel Flight - they may fly you for free (http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1124824691 ).  I also believe Stanford has resources for families traveling with patients for surgery.  Check out this link:  http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1124824664

Hope this helps!

-Shari

Hi David,
Check out the Fisher House http://www.fisherhouse.org/
I don't know if you could use it or not.  It's for families that have someone in the VA Hospital but it may also allow Military.  It's worth a look.  My husband is retired Navy.  We have insurance other than Tricare and I have to say as the secondary insurance they haven't paid much (if anything).  dont' know how it would be if we didn't have the other insurance.  As retirees it's not as good.  I don't know which other military ficilities are in the area but Fisher House looks like it's very close to Stanford.

Hi David,

Welcome to the Moyamoya family. I'm glad you have found us. There is so much support on this website and many people that can answer questions or direct you on where to find the answers. Surgery was 3 years ago at Stanford. Unfortunately the trip was out of pocket for me. Insurance would not cover the airfare, hotel or the car we rented. On Stanfords website there is a tab for places to stay that provide a reduced rate for your stay. Also, you can get in contact with social work for Stanford and they can direct you. There is housing sometimes that they can be provided depending on your situation and what is available. Feel free to ask any questions. Many of us on here have walked the road ourselves or with a loved one at Stanford.

Reagan

Thanks for the replies.  It's nice to have this resource.

I found out yesterday that while my insurance will not pay for the flights, I should be able to travel for free on a military aircraft with no problems.  Looks like there are daily flights out of Norfolk, VA to Sacramento.  All I would have to do is get down to Stanford.

Also, it looks like I won't really be needing a rental car because the housing they recommend is very close and there will be a shuttle.  The housing is on a sliding scale depending on income, so I'm not too worried about that.

Now we just need to nail down the particulars and focus on the surgeries.

Davidm

Glad you have that stuff worked out....good luck as you continue on this journey!  Don't forget to keep us posted and ask any questions, no matter how small!

-Shari

Hey David,
Glad you got the travel and accomodations worked out. Your wife is in for a rough ride after these surgeries. She will need you more than ever. When I went into ICU after my wife got in, it blew me away. I felt so bad for her but knew she was going to be better than she was. Be patient and understanding. Love her like you never have before and she will recover. The younger she is the better her chance for good things to happen.
My wife's first surgery was 3/6/09. We've been through it all and back again. If you need anything or have any questions at all about anything just fire a question up on the board. I'll get back to you.
Pat