Just to say thanks to all  who responded so quickly to my message as a new member, I really appreciated your thoughts and advice.

Lydia's consutant had conferred with Great Ormond Street Hospital in London with consultants who specalise in MMD and has sent them all lydia's scans and they are all of the opinion at the moment that medical managment is safer that surgery at this time as Lydia has had 2 scans since her last stroke 2 years ago and there has been no deteriation.

However,taking on board your comments, I will contact specialists consultants in London direct to get a confirmation on wether this is the best and safest option at the moment.

I will keep the site posted on the outcome. And once again a big thanks for all your feedback.

Love Louise and Lydia x  :-*

You're very welcome Louise. We're family, and we're always here if ya need us. We've all traveled this road one way or another, so we know what you're going through, and you'll never meet a nicer group of people.

I think I’m safe in saying that with all the feedback given, we all were asssuming Lydia's tests were unchanged at the moment if surgery wasn’t advised. We see that very often here, and never meant that our knowledge or opinions were better than that of any neurologist/neurosurgeon. We strictly speak from experience here. We’ve seen all too often, many members who have showed good blood flow to the brain on their SPECT scans, with little or no symptoms even, and were also told to wait, but sadly have had devastating strokes. So our opinion and advice is always, if MM is a progressive disease, why wait for the next stroke to be catastrophic, get a second opinion from a MM specialist, one who works with mm patients on a daily basis and has the experience to know if it's safe to wait and also knows from experience that waiting can be so very dangerous and life changing. My niece was told to wait. She had 4 sudden strokes and was in a coma, paralyzed completely on the left side, incontinent and on a feeding tube and will never be the same. That’s a lived experience that we wouldn’t want anyone else to go through. The MM specialists’ here in the USA have great credentials and an excellent tract record of saving lives with mm, so that’s the road we always advise all to travel.

My prayers are with you and Lydia.

Mar

Hello,
 I also was told no surgery and that medication was what I should do, and also had good blood flow.
 That was until, I listened to some wonderful people in this circle of friends here at moyamoya support.
I went to see a MM specialist and was told surgery can be done. As for good blood flow, there is blood flow it isn't good. Also, they expliane to me where my occlusion is there is no compasation if and when it closes completly it's too far up after the 3 helping arteries.I'm at 80%to 90%  the Dr.s at Umass (Worcester, MA)Knew this. The Dr.s in Boston, MA were the ones to explain option for surgeries. I will be going July 11th, for a direct bypass,
when everything goes well in the end I won't be a statistic. Please , get other opions. I just went home thinking nothing could be done. Until I came to this site.
now, there is hope.            God bless and I hope you find the answer that is awaiting you.  
Lena :)