Six years ago?

I have to say how HAPPY I am to find this site.  While my son is now six years and 26 days post surgery -- I am so happy to find a site where the people understand EXACTLY what we went through, and some days still deal with. 

I started with a simple search to refind Dr. Scott's email address.  I had a blood pressure question for him.  But imagine my surprise when I found all of you!!!

We are quite a bit past the "drama" of everything, but I would like to offer my support to those who are in the midst of it and would like to know it is possible to get past it.

Kim

Dear Kim,

Welcome to our family!  I'm glad you found this site . . . even 6 years later!  The majority of us definitely weren't dealing with MM issues back then, but many were fortunate enough to find their way here in time to get some very needed support as we traveled our MM road.  

It sounds like your son is doing well, since you're "past the drama of everything".  You were very fortunate to have the care of Dr. Scott, as he's definitely one of the leaders!  I hear he's just wonderful.  I am the mom of an 18 year old girl who had her surgeries 16 months ago at Stanford.  Over the course of our journey, we've learned that there is just a very small handful of neurosurgeons who are truly "experts" in the surgical treatment of MM.  We hope to see that change with time, as education and awareness gradually increase.  

I hope you decide to continue participating on this site, as each person/family's experience is useful to newcomers.  People who have been through it become almost like beacons in the dark for those about to go through diagnostics or surgeries. The support is so meaningful, and yes, how wonderful to have people know exactly what we've all gone through!  This is definitely a family here.

Anyway, I hope your son continues to do well, and again, welcome!

Warmly,
Jill    

Hi Kim

Welcome to the moyamoya family even six years and 26 days post surgery for your son.

I have a brother who is one of the older MMers at 48 years old. Kevin (Cubbie) had a significant stroke 5 years ago and went undiagnosed until about a year ago. We found this site and Dr. Steinberg at Stanford who performed a double STA-MCA on Kevin in May of this year.  We too are so grateful to have found this site and to the MM family for support and especially to DJ for providing this site.

Kevin had been sent home by other neurologist to live out whatever life he had left until we found this site and as a result, found Dr. Steinberg at Stanford.   Kevin is doing very well and we are eternally grateful to DJ who put this site up and maintains it .

I'm glad you found us and I am glad your son is doing well. It's nice to have someone like you who can support the new folks diagnosed with MM as well as the ones who are post op who don't know what to expect or who have questions as time goes by and for those who are not yet "over the drama". Kevin will return to Stanford probably in the next month for a 6 month post op evaluation. There's a lot of anticipation that things are as good as they are today.

I'm interested in hearing about your son's MM journey as I am sure others are as well. I'm sure you have a lot to offer many and we look forward to hearing from you.

Sincerely,

Lore 

Hi Emmasmom,

I'm sorry to hear of Emma's dizziness and tingling.  It must be frightening.  Have you re-consulted with Dr. Steinberg?  I think that would be my first step.  You probably know Teresa, and I am continually in awe at their fast response time to emails.

I am the mom of a girl (Tara) who had her 2 surgeries by Dr. Steinberg in June 2004 at age 17.  He and his team are definitely heroes in my book!  Thanks to them, Tara is healthy and happy (well, happy most of the time!) and living life to its fullest.  Her first year of college is proving to be occasionally challenging . . . other than that, life is just great!

There is an Ian Fleetwood listed at Dalhousie University in Canada.  He is a faculty member of the Division of Neurosurgery.  I don't know if it's the same guy, but you will, as there is a picture of him on the site.  Here's the link:

http://neurosurgery.medicine.dal.ca/ifleetwood.htm

Anyway, please keep us posted on what you find out about Emma.  You'll both be added to my prayers, and I hope all will be o.k.

Warmly,
Jill