Hi Tami, Firstly welcome to this website. Here you will find all the support and information you need to get you through this harrowing time. MM is most definately operable and there are several kids on this website who have had surgery and also have DS. If you email Dr. Scott with your questions he should be able to supply you with answers. Please keep positive - this is a disease that can be overcome with surgery. I am sorry to hear of the loss of your son.
Moira

Thankyou for your responses, yes I will definatly do my homework before the "test!"  Of course I want this to never happen to he again but I am just not sure I want to put her through more surgery right now and if I decide to I don't know where we will have to go.

Tami,

I am sorry for what you are going through right now.  Unfortunately, many in the medical profession don't know much about moyamoya disease.  There are only a handfull of specialists across the United States who have any significant experience with it.

I just want to share that my daughter, Daphne,  suffered two strokes following heart surgery, when she was about 14 months old.  She was at Children's Hospital of Philadelphia - the no 1 rated Children's Hospital in the country.   She was diagnosed with Moyamoya disease;  however, after the second stroke, Daphne's neurologist did not believe she was a candidate for surgery, and - when asked what to expect - told us that she probably wouldn't live more than two weeks.   We hated for her to stay in the hospital and  took her home with hospice care

Thankfully, I found this group and did my own research.  I got in touch with Dr. Scott (in Boston) and Dr Steinberg (in Stanford), who were both encouraging.

Daphne underwent bilateral EDAS surgeries at Stanford, with Dr. Steinberg,  when she was 16 months old.  She sailed through surgery with few problems  (and just turned four years old this Oct 7th!!)  A test about a year after surgery showed that her blood flow had improved by over 200%.

I would highly recommend sending your daughter's studies to Dr.  Scott and/or Dr Steinberg.  Their opinion is free, and there are resources out there to help fund travel cost/ help navigate insurance.

I can only imagine what you're going through.  My husband lost a daughter (born during a previous marriage) prior to everything we went through with Daphne, and I know that what we went through affected him even more than it did me.

Hi Tami and welcome to the MM family.

I can only begin to imagine what you are going through. I am sorry for the loss of your son however, there is hope for Jasmine and you can help Jasmine.

You are not in panic mode, you are in MOM mode and concerned for the well being of Jasmine.

Kotipup (Jenny) has been through this with her daughter Daphne and gave some very good and sound advice.  You can send Jasmine's films to either Dr. Scott or Dr. Steinberg for an expert MM opinion and there is no charge. Their contact information is listed under surgeons with MM experience or use the link to Stanford on the home page and that will take you to Dr. Steinberg's contact information. It is so very important that you get Jasmine's test results to a MM expert as the problem most of us face is the lack of knowledge among the medical community as it relates to MM rgardless of whre we live in the USA.

Surgery is the treatment for MM. There is no cure for MM yet.  The surgery doesn't guarantee no more strokes but it certainly minimizes the risk as the surgery puts the patient on a level playing ground meaning they have the same chance as any other person in terms of having a stroke.  Of course other factors come into play such as co-morbid conditions and lifestyle choices that can change the odds but that would apply to any person that may have other medical conditions and/or make less favorable lifestyle choices or even have a predisposed hereditary risk of stroke. The point is, MM is operable and an expert can make that decision and render an opinion based on Jasmine's current health status and condition.

Stay strong and know that you and Jasmine are in my thoughts. Please ask any questions and know that we are here to support you through your journey.

Hugs,

Lore

Tami,

MMD is reported to be degenerative. The narrowing of the carotid artries continues over time. I have not read anything which indicates how fast this occurs so you may want to proceed as soon as possible.

Russ