Good morning everyone,

Having read somewhere that 73% of patients suffer a stroke within two years of diagnosis I am wishing for my son to have an operation and get done with.

Having no idea of the length of time it will take here in the UK I am looking into whether I can afford a private operation in the US.

I have emailed Boston but I have to fill in forms, test results etc before I can get a quote.

I dont want to 'upset' our consultant and others in the chain so I am asking members if they could give me a rough idea of what it cost them to have a bilateral operation.

I am aware that their are many factors to consider and that costs will vary between patients but like I said to someone I have not a clue if its 10 thousand, a hundred thousand or even more.

If this is an awkward request then please mail my inbox. I will be happy for anyone that con help with the request.

On the plus side.......i took my son trampolining recently and the instructor reckons he should join as he has talent. Obviously his right left co-ordiantion must still be ok..

Hi,
My name is Carl Nolasco, I'm 18 years old and was Dx with moya moya. You should gather up all your son's studies, scans, film  & send them to Dr. Steinberg of Stanford, it cant hurt to try another MM specialst, they we're pretty quick about evaluating my case.

Evening all,

Thank you to Carl for your help and also to my one inbox messenger so far!

If anyone else would like to share some info then i would be grateful. I would have said 'how bad can it be' but from the one response all I can say is ................!!!!!!!

Jamil

You should gather up all your son's studies, scans, film  & send them to Dr. Steinberg of Stanford. I agree with CarpeDeim. If his team can't directly help you i am sure they can recomend someone in your area. You should be quick about it since MM is a progresive deisorder. the longer you wait the more dammage can be done!
Becky

I'm not sure how much something like that would cost. But I would pay any price to have my mom here. I'm not rich but I'd be willing to donate some.

I also would like to know.  Not everyone has health coverage, and it would be nice to have a "ballpark" figure.

I know that this surgery is very expensive, but what would you say your life is worth? If you don't have insurance you need to go to your local DFS office and apply for medicaid. I was denied until I was diagnosed with Moyamoya and then that approved me. Medicaid should negociate a price with where ever you would like to have surgery. If you can't get medicaid that what about making payments, maybe for the rest of your life, but you would at least have your life!
Best Wishes!

I think it depends on the surgeon and what kind of surgery you have.  I am just giving this information because I have it - but, in my opinion, I would have gotten the surgery no matter what the cost and no matter what I had to pay out of pocket.  I watched the explanation of benefits for my surgeries to come in...it was about $100,000.00 for my two surgeries, of which I paid about $2,000.00+1 doctor's visit out of pocket as my insurance didn't cover my initial doctor's appointment with Dr.Scott.  Luckily I was able to switch insurances before my surgeries, which still didn't cover 100%.

-Shari

I originally asked the question because after much searching of the forum I could find no answer. Come on people! it's not like asking how much you paid for a car or something for which a reply would seem crass!

Anyhow, I have an appointment at GoSH for my son with Dr. Ganesan. As far as I can see, that is the best I can hope for. The cost figure I have received privately suggests I would need to take out a 25 yr loan the size of a 4 bedroom english house to be able to afford surgery in the US.

Jamil