WE now have an appointment with Dr Stoodley but it isnt til the 13th of October  :(.  Then I am guessing he will book in more testing and then surgery.  So I am guessing that surgery wont be til the New Year with the way the Australian system works  :(.
Brielle has had 2 strokes that we missed  :'( and then a bigger one where she lost function of speech and movement of her left leg (which she is re-gaining). 
I understand that MM is progressive so waiting all this time is making me feel sick  :'(.
Can anyone give me information on the timing of surgery and when its ideal.  I want something to give to my pead when I call him on Monday morning so he can ring and push the appointment forward (if at all possible).
Thanks

I think you said it all, and can tell the pediatrician exactly what you just said…that this is a progressive disease and that she’s already suffered strokes and is at risk for more, so prompt treatment is vital.

You can’t say exactly when it’s ideal for surgery for any MM patient, except to say, hopefully BEFORE a stroke or damage occurs. The progression differs from patient to patient and every case is different because of so many individual factors involved, but at any stage you’re still at risk for a stroke. So I’d be as aggressive as I could to try and get her in to see him ASAP.

We'll keep you both in our prayers.

Mar

  I think your wise to give your doc as much information as possible.I don't want to add to your stress on this but I can tell you our experience and maybe it will help you doc to understand the seriousness of this and expedite the appts.
   Kathleen was diagnosed in Jan 02.We brought her to the ER and found out she ahd suffered a stroke we also were told she had 2 previouse strokes we hadn't noticed.
At the end of Feb 02 she had testing at Boston Children's Hospital and was scheduled for surgery in June(this of course freaked us out to think of waiting soooo long).We knew she was like a ticking bomb.
she then had another stroke early March of 02,(she woke up and couldn't use her right arm)this prompted them to move her surgery up to mid April.She had another stroke the day before surgery in the car on the way to BCH.It was decided that we would move forward with surgery,even though it's not comon practice to do surgery so close to a stroke episode, she was getting very unstable and  the strokes were getting more severe and closer together.She had surgery the next day....They were unable to do both sides because she became very unstable durring the surgery.Four days later she suffered strokes on both sides a very devestating one that left her with no use of ehr left side,she was like an infant.Her second surgery was a couple days later and she did well with this one.she then spent a month in a rehab hospital closer to home.She spent about a year in a wheelchair. she can walk now with the help of a leg brace but still has no functional use of ehr left hand and arm.I share her story so others will se how unpredictable and seriouse this disease can be.I so wish we could have had surgery before she was left with lasting dissabilities.She works sooooo hard to do the everyday things we take for granted and even though she does this with a smile it breaks my heart.Please know your family is in our prayers and I hope this helps with your advocating for a quicker surgery date.If I can answer any other questions please ask away. Your not alone......
Mary Grace

Mary Grace thank you so much for sharing your story with me.

Can I ask was Kathleen on any medication once she was diagnosed?? 
I ask this because Brielle has been put on 35mg of aspirin a day and they say this will be enough to prevent another stroke because it thins the blood.
I am not convinced, I am sure it is ok as a band aid measure in the very short term.  However because this disease is progressive it surely cant stop them happening altogether.
What is everyone elses thought on aspirin?? (I hope its called that in America)

81 mg of Asprin...all that I need.

As Mar has said it depends on each individual factors. I had a major stroke in 2002 but did not have surgery until 2003 because they also found that I had two brain aneurysms that had to be coided first. As far as medication I have been taking 325mg. of aspirin and Plavix since then. Of course I am alot older. They are right that it thins the blood. And that means it helps to prevent strokes. Just want to tell you and your family that you are in my prayers.

Kathleen was put on one baby asprin,81mgs a day as soon as she was diagnosed.She was 5 yrs old and about 30 lbs at the time.This could change as she gets older and grows......Her strokes seemed to be when she was taken off of the asprin for her angio,and for her surgeries.We were also warned to be sure she didn't hyperventilate or become dehydrated.We became obsessed with keeping her healthy.We all wash our hands 20 times a day I think and it's helped to keep her (and us) very healthy.Please feel free to ask any questions if I can't answer someone most certainly will.Continued prayers for your family.Please keep us posted.....
Mary Grace

Iam 28 and had a stroke when i was 20.  I didnt find out until January that I have MM.  I still havent had my surgery because I havent  found a dr I feel totally comfortable with.   So...  I guess its better for have surgery sooner then later but.. I dont think waiting a matter of months is really too unrealistic. However everyone is different and it depends of bad your case is personally.  I have a 100 % blockage on my right side.. and showing very slight progression on my left side.

masonsmom, where do you live?  We have a great doctor here in Florida if you are close.  Have you looked at the list of surgeons on this site?  maybe one that some has recommended is close to you.  I know how important it is to find a doctor/surgeon you are comfortable with.