Hi Punkin,

I am so glad that you found this website.  It is abundant with information about specialists, the tests, and information about the disease.  You will also find that so many people here are helpful, ready to share their stories and guide you to make the right choices.  Please read as much as you can on this website because knowledge is power!  Just read, read, read. 

I'm not sure if there are any moyamoya specialists at Johns Hopkins Hospital in Maryland.  I can tell you that it is a top-notch hospital.  I would definitely see a neurosurgeon there and seek a second opinion after that from one of the specialists listed on this website.  May I ask if you were diagnosed by having a MRI and angiogram? 

As for the cost, that will depend on each hospital.  Do you have insurance?  You will definitely need to check on your insurance to see if they will cover the operations for treatment and check with the hospitals on the cost.  I can tell you that it is very expensive. 

I will keep you in my thoughts and prayers and will be glad to answer any questions you may have.  Just keep the faith and know that things will all work out.  May I ask your age? 

from VA,
Michelle

Dear Punkin,

Hi, and welcome to our family!  I am sorry circumstances have brought you to us, but am very glad you found this website.  There are some wonderful people here, ready to offer advice based on their experiences, as well as offer a shoulder to lean on.  We've all been where you are now, in one form or another.

I am the mom of an 18 year old girl who was diagnosed last May at age 17.  She had her surgeries with Dr. Steinberg at Stanford two weeks after her diagnosis.  Shocked doesn't begin to explain how we felt when that whirlwind hit us!  Ten months after the fact, it is still hard to believe it all happened.  Fortunately for us, surgeries occurred prior to a catastrophic event, and we will be forever grateful for that.

You asked about Johns Hopkins.  Yes, it is a great hospital, but I haven't heard of a MM specialist being there.  It's certainly worth looking into, but keep in mind that the most reputable neurosurgeon isn't necessarily well-versed with MM, and that really is key to successful treatment.  Secondly, as Nancy said, please remember that MM is definitely progressive.  Whatever symptoms you were having that led you to a diagnosis may subside.  Many people think that that means they can delay treatment, which I strongly suggest you do not.  If you've been given a firm diagnosis, my suggestion is to get a second opinion from a MM specialist - one who deals with the disease on a daily basis.  The specialists can all give you their recommendation by reviewing copies of tests/reports (such as an angiogram).  You will find that many doctors will say they can treat MM, but ask how many cases they've had.  Usually it's not many at all, and you ideally want to have an expert providing care to you.

As Michelle said, surgeries are expensive.  It varies from facility to facility, with the # (one or two sides) and type of surgery (direct or indirect), etc. impacting the final cost figures.  Know that many people have successfully gone to a MM specialist for surgery, even after their insurance company initially said "no".  You may have to be ready to argue a bit with them.

I hope this is enough to get you going for now.  Yes, read up as much as you can . . . the more you know, the better you'll be prepared to stand up for yourself.  Don't make hasty decisions, but don't put things off for too long either.  You'll be added to my prayers, and please don't hesitate to post again, or to ask any of us individually for advice.  We'll be here to help see you through this . . . hang in there!

Big hugs,
Jill