Hi everyone;
  Just wanted to say hello and that I'm so happy I found this place. It's makes this rare disease seem not so rare. Let me tell you our families story. About five weeks ago my oldest son called me from school complaining of a horrible headache, I picked him up and by the time we got home he was feverish and vomiting. After a day and a half of steady vomiting we took him to our local emergency room. They hooked him up to an I.V. (because he was dehydrated) and treated him for the flu. The next day the pediatrician sent him home. The next day not feeling any better I took him back to the pediatrician, once again he sent us home. The following day he was no better and back to the pediatrician we went, this time he readmitted us, still treating him for the flu. Still vomiting and complaining of headaches they continued treating for the flu. The pediatrician finally ordered a C.T. scan just to rule out brain tumour. The C.T. scan came back with no sign of tumour. 2 days later (my son still doing no better) they ordered another C.T. scan. The radiologist on that day pulled the last scan and reread it and thats when the roller coaster ride
began. They saw what they believed to be A.V. malformation (a bleed in the brain). We were then sent to Sick Children's Hospital in Toronto, Ontario. An amazing place!!!This is Saturday and Lance has now been sick for over a week. We feel like we are finally getting some answers. On Monday morning Lance goes in for a cerebral angiogram to confirm the doctor's diagnosis. Needless to say everyone on th whole neuro ward of the hospital was quite shocked with their findings. Lance had advanced signs of moyamoya disease. What was more shocking was that he presented the disease with a brain hemmorhage (rarely seen in children) While in hospital Lance also suffered  a stroke. Because Lance had bled they could not treat the risk of another stroke with any kind of blood thinners. So it was complete bed rest for 5 days. (A great way to spend Easter weekend) An MRI 2 days later showed that he had suffered a stroke in the past week as well as 2 previous strokes. Lance spent 2 weeks going through many tests and recovering at Sick Kid's. Three weeks later we were finally back home. Right now he is resting comfortably, small headaches every now and then, but otherwise feeling pretty good. He is scheduled to return to hospital on May 10th for another cerebral angiogram followed by surgery on the 12th of May. Our doctor says if all goes well he will attempt to do both sides at the same time. Thanks for listening to my story. Keep my family in your prayers as I will keep all of you in mine.

Hi Carol---I am so glad you found this place, too.  Your story is heartbreaking........All of our thoughts and prayers are with you, your family, and especially Lance....one thing that you said sort of concerns me----that is, that the doctors may do both sides at the same time.....I may be wrong, but I was not aware that it was possible to do both at the same time (a few weeks, or even days apart, yes, but at the same exact time, I do not think so)......Who is your neurosurgeon?  How many moyamoya surgeries has he done?  Will the neurosurgeon with whom you are consulting do the surgery himself personally or will he have a resident do it?  Can I suggest that you get a 2nd opinion and have Lance's angios and MRI's e-mailed to my neurosurgeon, Dr. E. Sander Connolly, Jr. (esc5@columbia.edu) or to his colleague Dr. Neil A. Feldstein (naf6@columbia.edu)  Dr Connolly has performed over 50 surgeries and Dr. Feldstein has performed more than 70 surgeries. 
Please know that I used to be intimidated by doctors....and I have been a practicing trial lawyer for almost 20 years.....If you read my story on the Guest Book, you will see exactly what happened to me when I dealt with at least 5 neurologists who had misdiagnosed me.....I do not want to overstep my bounds, but I am truly thankful that I have the moyamoya and not any of my 3 beautiful daughters....You need to have your son deal with the very best possible neurosurgeons.  DR. Connolly did my surgery on April 16th (right side) and I am having my staples removed this Thursday, April 29th.  My second surgery will be done on Friday, June 4th IF ALL GOES WELL WITH A CT SCAN blood flow supply analysis that will be done in May.  That is why I think you really need to very carefully question and interview the neurosurgeon----If he tries to do both sides at the exact same time, not only will it be doubly painful, how will the doctor know if the first side surgery worked and that there is sufficient blood flow supply on the first side to actually perform the surgery on the 2nd side? PLEASE---GET THE SECOND OPINION.  Your son's very life is at stake, and brain surgery is not something that Dr. Connolly or Dr. Feldstein takes lightly......If you want me to help with setting up the appointments or calling the doctors, I am happy to help.  I have no medical background---I just paid very close attention to everything Dr. Connolly said and why he said it......God Bless you.  Let me know how I can help....PatM

Pat,

I've seen several references as to where both sides have been done at the same time (all on children).  Agreed, it's not the way I would want to go through it as a parent, but it seems to be a feasable way to do it.

I believe there are a couple of other families on the site who have had children go through both EDAS surgeries at the same time, one specifically at the children's hospital in Toronto.  I will see if I can put them in touch with each other.

-DJ

Hi Carol,

I just wanted to send you my best wishes and prayers for all God's many blessings. Don't worry, I'm sure you're in good hands. I've read where operating on both sides at the same time probably reduces the patients risk of having another stroke with surgery. Dr. Scott, another outstanding expert with mm children says: Most of the patients with moyamoya syndrome have a very tenuous blood supply to their brain that can be reduced very easily. Anesthesia can alter brain blood flow, and in particular, the starting and ending of the anesthesia are critical times when blood flow to the brain can be dramatically changed. To make the surgery safer, we monitor the patient's brain waves ("EEG" throughout the procedure using small button electrodes placed over the scalp except in the areas where we are operating. As we are carrying out the surgery, we can tell whether our anesthetic or surgical techniques are affecting the patient's brain function. If all is going well after the first side is completed, we will go on to get the other side done to avoid having to administer another anesthetic on a separate occasion. So, as you can see, It's very common to have it done on both sides if the specialist believes it's safer to do so, so don't worry. You'll be in our thoughts and prayers. Please keep us posted. You have a rough road ahead and we're all here for you.

God bless,
Mar

Hi everyone;
  Just wanted to let you know that our family has complete faith in Lance's doctor. His name is Doctor Peter Dirks and he has taken a special interest in moyamoya disease. He has performed 17 surgeries in his 6 year career as a neurosurgeon on children from all over Canada and the world. He has consulted wih Dr. Scott about Lance's case and Dr. Scott also feels that (if possible ) he should  operate on both sides at the same time. This is because of the risk of the anasthetic. By the way Lance just turned 11.
                            Thanks to everyone for all the advice
                                               Carol

Pat,
     He isn't getting more tests on the 12th he's getting surgery, its actually pretty quick. I also have heard of Dr. Scott doing both sides at the same time which really was not our prefrence but maybe some people are o.k. with it.

Carol,
            Another place for a second opinion is Stanford in CA. Dr Steinberg has done hundreds of these surgeries and is one of the best if not the best in his field. My daughters surgery was there as were alot of others on the website. Dr. Scott is also very good too!
We will keep you in our thoughts and prayers. We're
glad but not glad to have you in our family if you know what I mean. Good Luck! Keep us posted.
                             Nancy 

Hello   

I just want to say something. I was 8 when I had my surgeries, and my surgeon consulted with Dr. Scott, who had only done about 6 at that time. I understand why everyone gets upset about this, but I think it is right to trust your doctor, as long as you know he is doing what is best....

And there's my 

Sara