We're taking Jennifer (our two year old daughter) to Stanford August 6. She has two surgeries scheduled. First the left then the right side will be operated on.  BUT  before the surgeries she has an MRI, Brain Scan (which takes two days), and an Angiogram.  What is a Brain Scan? and how do they scan her brain?  How do they do the Angiogram?  
Well, I could go on and on with my questions. So I better stop.  

Michelle

To find out more about brain scans, try this link:

http://www.aidsmap.com/en/docs/D408FACC-E42D-49D7-AD58-AD319C08F6C5.asp

And for an explanation of an angiogram, I thought this was good.
http://www.med.umich.edu/1libr/aha/aha_angiogr_car.htm
Hope it helps. All the best,
Sharon :)

Michelle,

Glad to hear you are taking Jennifer to Stanford!  Your daughter will be in wonderful hands.

The two-day brain scan you mentioned is called a SPECT scan.  It is a test that measures the amount of oxygen a brain is absorbing.  It's a very simple process and gives the doctors some very useful pictures to be able to see exactly what they are dealing with.

You can read more about the SECT by reading this page: http://www.mayfieldclinic.com/PE-SPECT.htm

Also, you can see some of the 3D images the article talks about on my site here: http://www.moyamoya.com/pictures.html

As for the angiogram, Sharon posted a very good link that explains how that works.

When you have more questions, please don't hesitate to ask!

You and your family will be in our thoughts and prayers!

DJ

Michelle,

Hi.  My daughter went to Stanford last year for the surgeries.  She was 15 months old, and had already suffered two strokes.   I have to say you will be in wonderful hands with Dr. Steinberg.  Our doctors at home told us that Daphne would not survive her disease, and would probably die within a few weeks; however, thanks to Dr. Steinberg, she is now 2 and a half years old, and has never had another stroke.  Her brain blood flow is 200% better than it was before!

The testing is not that bad.  The worst part is that it takes a lot of time, and she will probably need to get anesthesia to keep her asleep/still during the tests at her age (unless she is very cooperative for her age!).   The brain scan is probably the SPECT with and without Diamox.  The procedure is very much like an MRI, except they are looking at blood flow/oxygenation, rather than structure.  The only difference between the two is that one is with a vasodilator (that they will put in through an IV line), and one is without the vasodilator.   The angiogram is the only invasive test.   They will put her under anesthesia, and insert a catheter in a blood vessel in the groin area and take pictures of the blood vessels of the brain (it is similar to a catheterization for a heart procedure).   She will not feel anything during the procedure, but her leg will be sore afterward and she will have to keep it perfectly still for several hours to prevent bleeding.

I know it all sounds scary right now to you.  Before Daphne went through it, we were increadibly nervous.  But it will be very worth it.  Daphne was very medically fragile when she went through everything a year ago, but she sailed through easily.  All the staff at Stanford are very knowledgeable and experienced, and they will take excellent care of Jennifer.  

Please feel free to email me, if I can help in any way.

Jenny (mom to Daphne.  www.daphnestory.com.  moyer305@comcast.net)

Hi Michelle,

Jennifer is in excellent hands with Dr. Steinberg.

Although my brother is an adult, he was treated by Dr. Steinberg when all other doctors sent him home to (in their words) "live out whatever life he had left." Dr. Steinberg is an excellent skilled surgeon and has treated moyamoya patients from infants to adults and for nearly two decades. The entire Stanford moya moya team is fabulous. They have treating moya moya down to a well oiled machine. It is like clockwork.

You have received great information from the others. Jenny can be of great help to you with her experience with her daughter Daphne. A segment about Daphne was on the Discovery Health Channel back in the fall.
I have followed Daphne's story for nearly two years. It is an incredible story and journey. Jenny is extremely knowledgeable and helpful. She has done a lot of research and gone through a lot with Daphne.

You will all be in my thoughts and prayers.

Hugs,

Lore