I would like to thank everyone for their kind words and for sharing your experiences with me.  After hearing several of your stories my husband and I immediately decided to contact Dr. Scott for a second opinion about our daughter, Skye.  Dr. Scott called me right away and she is scheduled to have surgery in Boston on November 10th. I was amazed at how quickly everything has fallen into place.  I am very nervous but I do feel like we are doing the right thing and we are getting her the best treatment possible. 

So thanks again to everyone and wish us luck!  I'll keep you posted :)

Ashley,
Thank you for updating us on Skye's progress. Stay Strong!! You are getting her on the path to the right treatment. My sugesstion is to carry around a notepad so you can write down all the questions you might have for Dr.Scott. No matter how stupid they sound. Example: My Mom asked my nurologest how long I would have to wait before i could be intimate with my husband after my surgery. The best thing you can do is resurch. Knolage is power!

Stay Strong, and if you have any more questions we are here.
Becky

Ashley,

I am so glad that your daughter will be able to see Dr. Scott.  My 6 y/o daughter just had her first pial synangiosis surgery on Monday, and she came home Wed!  She is doing great.  Her surgery was performed by Dr. Jodi Smith in Indianapolis, who was a neurosurgery fellow with Dr. Scott in Boston.  I have no doubt that Skye will be in good hands.  I'll look forward to reading updates and will keep her & your family in our prayers.

Jennifer

Ashley,

My daughter Paula was operated in Boston by Dr Scott 6 months ago. Your daughter and you will be in the best hands. Don't hesitate to ask as many questions as you have. You can send me a personal message if you prefer.

Stay strong.

It is 10 years post surgery for my son!!  I cannot believe it has been 10 years!! 

Dr. Scott is wonderful!  You are putting your daughter in the best hands possible.  And he doesn't mind answering questions either. 

Good luck!  You will be in my prayers!  I  will try hard to remember to say extra prayers on the 10th!!

Kim -- mom to Matthew, 17, diagnosed with mm at 7, three strokes, doubly rare with renal artery stenosis that led to removal of the kidney. 

Ashley

You are definately on the right track. I'll be thinking of Little Skye and sending lots of positive energy on the 10th.

Stay strong
Mark (Luca's Dad)

@Kim: Wow..... 10 years, now there's a milestone. Well done.

Hi Ashley,

Great news!

It's good to know things have fallen into place quickly. Not having to wait relieves some of the anxiety and anticipation. Most MMers say the waiting seems to be the worst. It was for my brother.

Skye will be in good hands with Dr. Scott. Aside from being a leading MM specialist, many have testified in this thread to his knowledge and success in treating other MMers. Just look at Matthew! Ten years post surgery and he plays football. Remarkable and inspirational.

You will all be in my thoughts on November 10th.

I will watch for your updates and please ask any questions or come to the board to simply talk. We are here to support you.

Lore