Could really use some support and reassurance right now.  After the birth of my baby a month ago, I was diagnosed with moyamoya through a random set of events.  To date I have not been symptomatic but based on the significant blockages I have in my carotids, STA-MCAs on both sides of my brain are recommended.  We should be headed out to Stanford in about a week for additional testing and the surgeries.  Nervous about having surgery when I so far haven't had any symptoms but also nervous about something happening between now and then.

Know it's silly but also worried about the head shaving.  Crazy to go from being "normal" to having so much wrong in such a short period of time.  Can anyone provide any tips for dealing with all of this?

Also, any advice for what will happen in Stanford when I arrive?  So far, everyone has been really helpful so feel like I'm in good hands.  Just scared about the unknown.

I don't have much advice because it is my daughter who has MM and she was only 5 at the time. What I can say is that your very lucky to be undergoing surgery before you've suffered any strokes. I know the waiting is sometimes unbearable but as you sadi your in good hands and moving in the right direction. I know for my daughter they really only shaved a very small strip of hair on both sides. Thsi was pretty easy to hide and grew back quickly.  It is pretty crazy to go from thinking life is normal and then facing surgery and possible strokes. Our life changed forever in a matter of jsut a few months. My daughter was not so lucky and suffered several strokes. I don't have advice about Stanford but I'm sure someone ehre will answer any questions and offer some great advice about your stay there. Many prayers for you and your family. Please keep us posted when you can.
Mary Grace

Welcome dcmm!

It's only natural to be apprehensive about any surgery. Like Mary Grace mentioned, you are fortunate to have not had the common symptoms like TIAs and stroke. And like Mary Grace mentioned, they don't shave your head.

You will have several days of testing prior to surgery and meet with the anesthesiologist and other doctors. You will have one side operated on, go to ICU and then to a regular room. You will then be released from the hospital after about 4 days total depending on your individual progress and there will be a week before the next surgery.

My brother did very well. He had had several strokes and a dissected right upper internal carotid artery. After his first surgery, he was released in 4 days and I took him back to the apartment and the following day we went for a drive to Monterey and Carmel. The next day we went to dinner. So as you can see, he did well. After the second surgery, he had a setback but still did very well given all the circumstances and his condition. We spent a total of three weeks at Stanford.

I hope this helps to ease your mind a little. Everyone at Stanford is so very nice and attentive. You are in excellent hands.

Best wishes to you and keep us posted on your journey when you can.

Lore

Dr Lewis at Shands in Gainesville did my daughters surgery and he doesn't shave the head.  She didn't even have the area at the surgery site shaved.  He said studies have shown that shaving the area doesn't lessen the in incidence of infection so he doesn't do it.  Destin also didn't have any of the usual symptoms.  She had migraines and that is how we found out she had Moyamoya. You'll be in good hands from what I've heard about Dr. Steinberg.

Thanks to all for the advice and support.  We leave next Tuesday for Stanford.  Then the first surgery will be on the 27th of April and the second will be on the 4th of May.  Just really not looking forward to the next 3 weeks but....I'll do what I have to do in order to be ok for my baby girl (born a month ago).   

good luck and praying for you.  I understand it all happening really fast.  my 16 y old daughter had a masvie stroke at 15 then found out she had moyamoya and tomrow she has one of her two operations for it.  we are nervous and all too.  and i'm going to have to get my 14 y old checked out casue she too has migrines all the time. 

Best wishes. It's scary because it comes at you out of the blue and is such a huge thing to comprehend. I know, I've been there too. But have confidence in your surgeon and his team, you'll be in the most capable hands and will be receiving the best care available. I'll send prayers your way as those help too.
Kim
P.S. I'll be in Stanford mid-May for a 3 1/2 year checkup. No problems and feeling great. Once you get beyond the first six months post-op, time again begins to whiz by.

It is very scary to go from being "normal" to sickly so fast.  I think we have all experinced that in one way or another.  For me I tried to put off my sugeary until it "fit into my life" and my nerosugrgen looked me in the eye and told me if I wait until after Christmas I probably wouldn't be alive.  That sure put it in perspective.  At that point I just looked at it as somthing I need to do to get back to normal.  A mountian we have to climb to get our life back.   And it is all worth it.  It's been a lot of work for me (I had four strokes which is how and when I got diagnosised so I have speech trouble and balance/strenght issue) but today it's been one year since my first stroke and when I look back it was all worth it.  You will grow as a person, you will celebrate small victories, you will find strength you didn't know you had & you will see the world in a whole differnt way.  You like all of us will do well heal. With moyamoya being so rare it's easy to feel like people don't know what your going threw (and most will never understand) But know that we all understand and most of us have been there!  I dont want to tell you not to be scared becuase it is scary, but you are in great hands!  As for the hair.... I was way nervous about that too!  My dr just shaved a small strip of hair.  He left some by my face and lots overtop of it.  When I left the hospital I made my mom straighten my hair (she thought it was a waist of time..but it ment the world to me) and when I left you couldn't tell I had just had brain sugery you couldn't even see my stiches through my hair. Now that it's growing back it's a bit more of a pain (little wings stick out from time to time) but most people I meet would have no idea I was so sickly just a few months ago.  Good luck, stay strong!

Just sent you a PM.  Call me and I'll fill you in.