Dear Trina,

Welcome to our family!  I am so glad you've posted here, and understand how difficult it is to take that particular first step.

If you've spent time reading things on this board, you may know that I am the mom of an 18 year old girl who had her surgeries with Dr. Steinberg last June.  Tara was 17 at the time.  Like you, there were numerous "incidents" throughout her life that suddenly made sense. 

Believe me, I know how shocking the diagnosis of Moyamoya is.  When I reflect on the last year or so, I still have a hard time believing it all really happened.  It's an amazing road to travel, one that only people who have been there before you will relate to.  Well, you've come to the right place!

I'm sure you're feeling just a myriad of emotions right now, but know that you've made the right decision.  You're taking steps to solve a problem that can't be solved any other way, and you will be in the absolute best hands possible.  Speaking for my family personally, we trust Dr. Steinberg with every ounce of our beings.  He doesn't do surgery just for the sake of doing it, but when it's needed.  It sounds like you've done your research and learned that he is an expert when it comes to Moyamoya.

Good for you for keeping a smile on your face!  We can either laugh or cry about the situations we're faced with.  I believe that humor will carry you much farther than sadness will.  The best news is that MM is treatable, and you're doing exactly that!

We (my husband, daughter and I) would love to be of support to you while you're here.  Oops, I forgot to mention that we live in San Jose, which is just about 1/2 hour from Stanford.  We're pretty determined that no one should go through the experience of surgery without someone who has "been there, done that" (DJ's words) with them.  We'll let you call the shots, but know that we'll be at your beck and call. 

You're right - there will be others out here while you visit.  In fact, one is a terrific family from New York!  It would be great if we could all get together (actually, I'm doing some scheming along those lines, and we can talk about that later).

For now, I'll just reiterate how glad I am that you're on this site.  There is a wonderful group of people here, ready to share your burden and help you through this.  I know what you mean about feeling bonded to people you haven't met!  MM is still in the rare disease category, and such a small percentage of the population has it . . . how can we not feel bonded?    

Well, enough for tonight.  You will be in my prayers and I will look forward to talking with you and hopefully meeting you in a few short weeks.  Please don't hesitate to ask questions or let us know if we can do anything for you in the interim, o.k.?  Until then, take good care of yourself!

Hugs from California,
Jill 

Trina,

it sounds like you on the right path. I will keep you in my prayers.

Rena

Hi Trina and welcome!  

Luckily, you've come to the right place.  I'm sure by now you have read as much as you can on these boards.  If not, I encourage you to read, read, read as it is very helpful, comforting, and will give you lots of knowledge, and as you know....knowledge is power!  

As you may or may not know, I will be going out for my follow-ups on May 1st and will be out there while you have your first surgery.  I'm not sure if I will be able to come sit with your family as I have my angiogram and Xenon test on the same day.  I know I won't be able to be there afterwards, but hopefully later on, I can visit with you if you'd like.  

Please come here anytime to ask questions, get support or whatever.  We are all here for you if you need us.  

Send me a PM and let me know when you are getting in to California.  

And take care of yourself until the surgeries.  We will all be praying for you!

Michelle

Trina,
         My daughter had her surgerys by Dr. Steinberg in early 2003 in my opinion you can't do better. We were very pleased with our outcome he certainly saved her life. We still crack jokes and use humor, we have all along, its the only way to get by in our book, even Mandy cracks jokes about herself, definately better to laugh than cry, you deal the best way that works for you. I know you'll do great Stanford is top notch even after Steinberg the nursing care on down the line. Good Luck and our thoughts and prayers are with you and your family. We're here for any questions you have and support you need. Hang in there!
                                Nancy

Trina...Hi  ..just want to tell you I feel the same way regarding "humor"...I've used it in so many ways with all the health problems within my family and it is definitely a wonderful medicine...just to laugh..even though the subject is serious...it'll definitely move anyone away from depression, sadness, stress...etc...and let us relax, have faith, keep our chins up and take life however it comes to us knowing "we can do it"....and I just take one day at a time...as I have said many times lately with all the problems happening to my family...there is a reason for all of it whether we like it or not.  This website has been my spot the past year....reading posts alone has given me strength to go on....and the feeling that I am not alone....makes it easier to go on with daily routines knowing if I need a "shoulder to lead on"....I come on MM.com  ;.

Definitely the best thing DJ did for all of us that had to follow the MM path in various positions whether its happening to ourself, our spouse, our child, our relative, our friend.....we are all touched by it.

Warm HUGS...CarasMOM

Hi Tiomasi,

I'm new to the board "itsme"...actually I was there May 2nd at Stanford to see Dr. Stienberg and they had told me about  a MM gathering. I missed it.  Any way, I am
scheduled for the BP on June 21st and I am anxious to know WHAT SHOULD I EXPECT. I've had MM for the past 7-8 years and I know it's not getting better. I just hope I can go back to work in 4-6 weeks. I hate to think about
what my hair is going to look like. I've had LONG hair ever since I can remember....oh well that's going to change....any way that should be the LEAST of my worries.
Again thank you for sharing and giving us IMPORTANT
INFORMATION.

LOL
itsme