Hi everybody!
I have a daughter Louise with moyamoya, she is 7 years old but this time Iam concerned about a child  that was diagnosed this summer in Sweden. He is 10 years old and the doctors told his parents it´s too late for surgery. He´s had a stroke and his  left arm is not functioning 100 % but apart from that he has´nt had any permanent damage yet.
Did any of you ever heard of a child this age where the MM has gone this far (4 months after diagnose) that it is too late for surgery???? I think his parents should get a second and maybe third opinion from the experts in the USA and not only listen to the (unexperienced) Swedish doctors and I ask you all to give his parents courage to take his case further.
I know his parents just found this board so if you have anything to say to cheer them up, please do so!
I have been reading this board since it started and it gave me so much comfort through all these months!
Annica

I do not understand how it can be too late for surgery.  I am not a physician of course, but the surgery for MoyaMoya does not repair the damaged vessels, but rather bypass them.  I can see no way in everything that i have read, which is an extensive list, that it can be too late.  Re-vascularization is the key, and getting a good flow to the affected areas of the brain is the desired outcome, it is too late to reverse a stroke, but not too late to improvr blood flow.  Wiyhout a doubt she should get another opinion!!!!

Annica,

I agree with Tommy!  It's never "too late".  If he doesn't have surgery, he will continue to have TIA's and stroke and risks serious permanent damage!  I would definately suggest another opinion from a doctor experienced with Moyamoya! Fast!

It is never to late.  Your child needs increased blood flow plain and simple.  Get another Doctor.  Fight for your child as they deserve nothing less.  Email Dr. Scott directly for information.  Without the surgery the strokes will not stop.  With the surgery he will lead a productive life. I am angry at Doctors who do not understand this disease. Please fight for your child, and if you can come to the US to have it done.  My daughter has had both sides of her head done at seperate times.  We were given a gift of early detection. God bless. My prayers are with you.....

Annica,
My son was 11 when he had his stroke. It was 4 days before they even realized he had a stroke here and 2 months before they diagnosed the MM.
I live in a small town in the US, even here some doctors don't know about MM. The first doctors that diagnosed him only wanted to do surgery on the side he didn't have a stroke. They said the damage was done on the stroke side, no reason to do surgery there unless I wanted to.
With the info I found on this site, I felt something was wrong with that idea. Therefore, I contacted a speacialist in MM, Dr. Steinberg. I ended up taking my son 1,400 miles to have the surgeries. I had to fight to get the insurance to ok such a trip, and it took 6 months after the stroke before my son had the surgeries.
It hasn't been a year since my son's stroke, but I feel alot better knowing the surgeries are done, both sides. He is still working on improving the use of his left arm, which he had lost complete use of. I would say he has about 50% of the use back.
I suggest getting all the advice you can. Although it might be too late to repair all the affects of the stroke, I don't believe that, it is never too late to repair the MM and know that your child will not continue having stroke after stroke.
I hope this helps your friends make a decision that helps them and their child. It was very hard for me to tell a doctor they didn't know what they were talking about, but I am glad I did.  

Annica wrote on Nov 8^th, 2003 at 2:56pm:

Iam concerned about a child  that was diagnosed this summer in Sweden. He is 10 years old and the doctors told his parents it´s too late for surgery.

I can'y believe some of these neurologists! How can they diagnose this condition, and not know enough about this rare disease to make a statement like that. My God, this means that boys life. Not to frighten anyone, but the facts are that you CAN"T WAIT! I've spoken to a family who was told by their doctors that nothing could be done also. Two years went by when the inevitable happened... a massive stroke which left her in a coma for long time, blind, feeding tube and a quadraplegic. She was even givin last rights. She has since had surgery on both sides and she has come so far. Her eyesight is fairly good, no feeding tube, no briefs, and on the road to walking. Thanks be to God! But this boy needs a chance. He's young. With the right MM expert on his side, he can avoid the inescapable damage that lies ahead.

DJ has got all the necessary information right here on this website. I urge them to use it. asap!

My prayers are with you.

Mar

Hi annica, as far as i'm aware, from what you've said, this little boy really needs the surgery as soon as possible, how can the docs, say its too late? That gets me so upset and frustrated.  My son had suffered two strokes, and sustained braindamage, but he had the surgery, and it has made the world of difference.  My son's neurologist said, that if it wasn't for the surgery, mitchell would be completely retarded by now.  I hope this little boy, is given the same chance mitchell was.  please offer my best wishes to the family of this young boy.