Has anyone had a doctor not recommend bypass surgery because you were not synptatic although your were diagnosed with MMD?
But another doctor recommends it and you decided to have the  surgery or not have the surgery.

I'm just trying to talk to some people out there because I'm in that situation. And I'm trying to gather info to make smart choices

Sarah A

Sarah, did you mean symptomatic?  My daughter never had a stroke ...just headaches. Her angiogram showed that she had moyamoya on the left and she had surgery.  Now she has it on the right but it hasn't progressed far enough for the surgery to work.  However, we will NOT wiat until she has a stroke to have it done.  As soon as the doctor says it has progressed far enough for it to work she  will get it done.  Have you sent your results to Dr. Steinberg at Standford. He will look at them and give you his opinion and he is one of the best Moyamoya doctors.

Yes i did mean symptomatic.
What md told you that it had not progressed far enough? Dr Steinberg or another md?

I was diagnosed 3 yrs ago when I had my baby (2days after) when I had a stroke.

I was never told that it had to progress to a certain level before surgery could be done.

I did send my stuff to Dr Steinberg and he recommended the surgery.

It was a surgeon here in Tampa.  She still had (as of last December) great blood flow on the left.  The angiogram showed that there was s small area that showed some blockage and it would need to be watched.  Of course progression is different with everyone so for now we are watching for any serious symptoms.  The explanation for the surgery not working now is this:  If the brain is getting enough blood then it would not seek out the new blood source to get the needed blood.  In that case the srgery would not work.  They explained that she needs to wait until the brain is looking for blood to do it.   Our surgeon that did the last surgery (on the right side) has moved back to Australia.  I will sendandy test results that show the MM has progressed to Dr. Steinberg for his opinion.  I will not wait until she has a stroke.

I think that is true for indirect vasulirization. But it should not matter for direct-vasulirization , But I am not 100 % positive on it..

Thank you.

Hi Squeaker,

I may have had a similar situation.

I spoke with a 'head of neurosugery' in one of our major hospitals here in NZ. 
His 'advice' to me was basically, "If it ain't broke, don't try to fix it'.  Because I haven't had a stroke and he said that my 'symptoms' might not even be attributed to my moyamoya at all.

I made the decsion to have surgery. My mitigating factors were

• I have moyamoya (scans and at least 3 experts agree to this) and nothing in the world is going to change this
  
• I am still young and healthy enough to be able to recover from surgery
  
• Having a stroke isn't really an 'if' but a 'when' and what quality of life would I have after one.
  

The choice is yours but with actions may come consequences.  You do need take into account the 5% chance of 'bad things happening' from the op, the chance of complications from the op and futher progression of the disease. 

I've made my bed, now its time to lie in it.

Thank you sooo much!!!
My neurologist said the same thing when I went talk to him about what Dr. Steinberg suggested. He told me "If it's not broke, don't try to fix it".

Sarah