I wanted to know if there were any MM who have not had the surgery and just on Meds alone? What happens if you don't get the surgery and only treat your MM with medication? Also does any body have a problem with altitudes with MM?

We live in CO (6,000+ above sea level), and Tyler hasn't had any problems. Maybe it makes a difference if you lived at a high altitude before hand  . We also have flown, however I can't say if it was the MM or the fact that he just had his staples removed a few hours before, that caused his problems then?????

yoki wrote on Feb 23^rd, 2004 at 2:35pm:

Hi Yoki,

A thorough evaluation of the blood flow pattern in the brain is essential to developing a treatment plan for each patient. A quote from Dr. Scott, a leading specialist on mm says about your question: "All patients with moyamoya syndrome have progressive narrowing of their brain blood vessels over time, and I have never seen an exception to this rule after many years of studying these patients. Along with this progressive narrowing of the brain blood vessels, the patient's clinical condition will worsen also; this is why surgery to increase the brain's borderline blood supply is so important. Certain medications can be very helpful in the treatment of the symptoms of mm. It is important to understand, however, that no medications prevent the arterial narrowing process from progressing or keep the moyamoya vessels from developing, and I firmly believe that surgery is the mainstay of treatment for the syndrome."

From my family's experience and many here on the boards, the result was massive strokes and much more. That's the risk without surgery with this serious disease.

Good Luck!

Mar

I can not believe they are not giving the surgery to everyone. It is a progressive disease and I am a living testiment to that. I have told you all previously that they watched it get worse in me. When I first went in to the doctor, it was only on one side of my brain, and then, it went to the other side. I would find a doctor who wants to do the surgery because more circulation could never be a bad thing. Just my opinion. But, those of us who have had the surgery know that it is worth it.

Please, I hope I didn't say too much. Just think those of you who have been told you don't need it yet, should go to other docs for second opinions.

God Bless!

I'm gonna have to agree with Mar, Sara, Nancy, and Dr. Scott on this one...

I went a year between getting to the point where I needed surgeries on my left an right side.  I have no doubt it's a progresive disease and the sooner it's treated with surgery, the better.

Having permanent damaage from major strokes or TIA's isn't worth it as far as I'm concerned!  Been there, done that, got the T-Shirt.

Just my 

ddtlans,
             You've never had surgery?
                                
                                        Nancy