The Dr. here in Memphis does not rec surgery since she has no strokes or weakness on one side of the body.  She had a hemorage and has been in the hosp for over a week.  He says that the surgery is only in cases of stroke and weakness .  Is that Correct?

No, as a general rule, this is absolutely not correct!  Surgery is done on many patients, hopefully prior to a stroke, to provide the very necessary blood supply to the brain.

Your sister-in-law may indeed not be a surgical candidate, but I would strongly recommend sending her test results to a MoyaMoya specialist - someone who sees the disease on a daily basis.  The experts will provide an opinion free of charge.

Dr. Steinberg at Stanford has performed several hundred bypass surgeries.  He is the premier MM specialist on the west coast.  Dr. Scott (Boston) is the leader on the east coast, but he primarily sees pediatric patients.  I have provided a link with Dr. Steinberg's contact information below.

http://www.stanfordhospital.com/FindAPhysician/Search/doc.aspx?doc=894&resultSet=894

Good luck to you as you sort this all out!  You and your family will be added to my prayers, and I hope you can get the answers you need from someone more familiar with MM.

Warmly,
Jill    

:)Hello there. I have been off here for a long time now. But, this past Feb I lost my sister w/Downs to this. Also, my brother  has the same thing. The MAIN thing you will find out is that you have to FIGHT for her. Let NO ONE turn you down. The ONLY reason they cannot do surgery, that they consider on a Downs, is the fact that they tend to get spinal steniousis (sp). If they have this, surgery will cripple them. I do not know the facts for you, as I said, I have not been here for a long time now. But feel free to e-mail me. I have PLENTY of info. I have lived it. My brother did have the surgeries, I did not like his doctor, but we can thank the insurance companies for that. But, anyway, one side did not take. He is not doing well. It is like reliving a horrible nightmare all over again.   But you would not believe what I had to go through to learn all I did. I would feel very honored to give you what I have learned. But some of it is very upsetting. It pertains to how the doctors think! Long story.  God be with you!   MJS

My son Dane is 12 years old with Downs.
Following his diagnosis (TIAs) in April 05 we were informed that the disease could be treated with blood thiners.

As both Danes corotid arteries were completely blocked we researched the web sites and informed the local neurologist that we were going the seek further opinions. He then referred us to an experienced Neurosurgeon who had no hestitation in recommending surgery.

Quiet the opposite to our original treatment.

Dane has now undergone both right and left STA MCAs and tommorrow with have a third proceedure to have burr holes placed in his mid line section.
All within 7 mths of original diagnosis.

Without the operations, our biggest fear was that Dane could have a major stoke. No one could predict if or when this may occur. His communication is limited now and with every thing else he has been through the thought of ongoing added disabilities such as paralysis would be enornous to overcome.

He may have never been impacted by a major stroke, how do we know, and to put him through these proceedures have been a difficult decision. The decision
was made to reduce the odds of it happening.

It would be astute to seek further opinions. You can then be comfortable with your decision.

PS  Dane is free of SP (the spinal weakness), but I cannot recall it being discussed with any of the neurologists or neurosurgeon ?

My daughter is 8 yrs old and has Down Syndrome.The "Spinal Weakness" and "Stenosis" that 2 of you speak of are you referring to Atlanto Axial Defect ?? I know Kathleen has been x-rayed to rule this out.If not could you explain what they both are?
Mary Grace