MJS:

I am sorry you didn't get the answers you needed. I think the problem is that everyone knows how important surgery is. If she is not a candidate for surgery, she will, in time, continue having strokes. Moya Moya is a progressive disease, and therefore, if it is not treated with surgery, will continue to progress. Unfortunately, MM is causing the blood vessels in her brain to "stop" flowing. With out the proper circulation, she will have strokes. Her symptoms will be (most likely) numbness in her face, and limbs, migraines, and sometimes I have heard of people having involuntary movement. For example, their hand will kind of twitch...

Doctors usually put MM patients on a blood thinner (like aspirin). Given the fact she has had a brain bleed, they should not do this.

This disease moves at different speeds. I have heard of people without the surgery not having a stroke for many years. In many, it moves faster.

The only thing that you can do (if she can not have the surgery) is let her take it easy. Try not to push her too hard physically. Make she she gets lots of rest, and eats enough. (Being over tired or hngry can trigger the symptoms, in my case)

Other than a surgery, I do not know of any other procedures. I hate to be the one to answer you honestly, but if the doctors won't do it, I feel someone should.

Please keep in touch. My prayers are with you two!

Please feel free to contact me if you want to. My email is sgosline@crcins.com or sarabug_99@yahoo.com.

Sara

Hi MJS,

I'm sorry that you did not get the answers you sought personally from us in your first posts, but if you read the medical links here, it will tell you as Sara just explained, that this disease is a progressive disease, and to date, surgery is our only option. Medications help treat, but progressive deterioration continues in the majority of individuals with mm disease. That's why we emphasize a doctor with experience with mm, they will know more than most neurologists/neurosurgeons, and know the importance of time involved and the advancement of the disease. Unfortunately your sister has had many complications such as intracerebral bleeding, you may not know the brain damage done. It also sounds as though the doctors are affraid of hemorrhage also. But like I said in the other post, the only thing I can suggest is another opinion from a mm expert, to be sure that all is being done for your sister, if you're in doubt. The links for that 2nd opinion are here also. You can mail them your sisters films and records and know immediately. Dr. Steinberg, of Stanford is the best in my opinion, but there are other excellent doctors here qualified to help you and give you the answers you're looking for. God bless you for caring for your sister. My heart and prayers go out to you both.

Mar

MJS452,
          My daughter was in the hospital waiting for her brain to cool down to go out to CA. from Philly for her surgery and there were three different blood thinning meds. to try on her while waiting for surgery by the way she had severe involuntary tremmors she could not even sit up without her body shaking when they tried the mildest least likely one first to cause brain bleeds her brain started to bleed right away so they then decided to just give her shots of Lovenox which does not cause brain bleeds she ended up taking the shots for 8 months or so and that was only because of an oversite she could have stopped them shortly after surgery, she is now just taking a coated asprin a day. My point is maybe she can have an alternative to the med. making her brain bleed. Is it that this doctor just doesn't know enough about MM to treat her properly. Mary Grace had a  good question maybe we missed it but why can't she have surgery having down syndrome certainly is no reason. Ask some questions or by God please get another doctor more knowledgable. You can send your films to Dr. Steinberg for a second opinion even if you cannot go there for surgery. Please keep seeking more answers don't just except the ones your givin. Keep fighting. Good Luck. Keep us posted.
                            Nancy 

Thank you all SOOOO very much!!!!! I am so happy for the Honest opinons!  Her situations is this,,, she is 54 yr old Downs, severe Downs. But her health has exceded any predeictions by any doc alive. But her stress level is extremely high. When in the hospital, because of the stress level only, her heart rate and blood pressure dropped to very dangerous levels, actually, fatal. They could not understand why, or how to fix that. I TOLD them over and over it was the stress they were putting her through, needlessly. (Which they honestly were). So they stopped, moved her to a private room, and she imm. improved. They then realized that the stress alone could do her in. But they also didnot know enough info(I figured this out later), to tell me what to expect. They did say her viens were extremely "intangled". And that apperantly she had been having  mini strokes for some time. She has had nothing done to her medically in her 54 yrs other than blood pressure check(which she HATES) and a blood test once a year. SHe has NEVER lived outside of the home, not been to school, etc. She is totally dependant on her family only. Her speech is bad, so others cannot understand her, and many things she cannot even tell you herself, as she doesn't know. I have to guess when something isn't right. SO,,, having the surgery, at her age, her ways, etc,,, was much more than she could have taken anyway. SO, I am just trying to find someone who may have lived with this, and the outcome, or systpoms to possibley expect. None of us has that "crystal ball" as one doctor told me. Sorry so long,,,, but that is some of our story. Hope ths helps to understand. Sometimes I wish I could. And some answers have helped me here today. But PLEASE,,, can I stay in contact with you? I am so alone with this. I am in Inpls, In area. We had the "BEST" doc on this, and her knew little. I may contact some you have given me though.  Thanks again!!!!!!!!!!!!!!!!      MJS

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GOD BLESS!

We are all here for you!!! You are not alone.........
"The Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words."  Romans 8:26 (NRSV)

WE are here for you when your sighs and sorrows are too deep for words......God Bless. PatM