Hi... I am new to the group, and thought I'd introduce myself... if any of you have any advice/insight/experiences to share, I would very much appreciate it.

My daughter, Daphne, started having seizures at 3 months old.   She also has a coarctation of the aorta (narrowing of the aorta in the heart).   About two weeks ago, following repair of her heart defect, she had a stroke.   An MRI revealed a severe moyamoya, and the neurologist was very pessimistic about Daphne's outcome.   She had a second stroke two Sunday's ago, and was sent home from the hospital under hospice care -- they had prepared us that she would eventually have more strokes and, inevitably, die.

We contacted Dr.  Scott in Boston and Dr. Steinberg in Stanford and sent them Daphne's MRI films.  Today, we got a call from Dr. Steinberg's nurse, Teresa (who is wonderful!!), and were told that Daphne was a surgery candidate, and that they'd like to do her surgery as soon as early March.

Dr. Scott is supposed to get back to us in the next couple of days.

We've just been on this tremendous rollercoaster ride  --- from having a "healthy" baby with developmental delay and a seizure disorder, to having a baby whose had two strokes and was expected to die, to having a baby that is making a decent stroke recovery and who is now a surgery candidate.

I have not seen anyone on this board (granted, I've only been looking for a week or so) who has had a child with symptomatic moyamoya at such a young age.    I would just love to hear other experiences, especially with the two neurosurgeons, Dr. Steinberg and Dr. Scott.

Thanks so much... this board is a great resource!

Jenny

Dear Jenny,

Welcome to our MM family!  I am sorry that circumstances with Daphne brought you here, but am very happy you found us!  As you continue to read, you'll find this board to be full of information.  Also important, the people here are compassionate, supportive, wonderful people who have traveled this road in one form or another, and love to offer shoulders to lean on.

I can't imagine what you've already endured with Daphne's illness.  Good for you to seek another opinion for her Moyamoya!  Unfortunately, most of the medical profession is not familiar enough with the disease to know to advise treatment options.  You've taken the right steps in contacting Dr. Scott and Dr. Steinberg.  They are by far the most experienced neurosurgeons with this disease, and I would trust either one of them with myself or a loved one.

I will speak from personal experience regarding Dr. Steinberg.  My daughter was 17 when she was diagnosed.  Dr. Steinberg advised surgery within 30 days, as Tara's MM was pretty severe.  She had both sides done, a week apart, last June.  Our experience with Dr. Steinberg, Teresa, and the entire Stanford staff was nothing short of incredible.  While we hope to not have to go through it again, we feel very blessed to have had their expertise and compassion available to us.

As Michell offered, I too am available to try to answer any questions you might have.  Please don't hesitate to post again here or to send me a private message if you wish.  We live about 1/2 an hour from Stanford, so if you end up coming out here, we'd love to meet you and be of support to you during your stay.

For now, we'll add you and Daphne to our prayers.  She sounds like a fighter, and obviously you're not a parent willing to give up!  Know that you're on the right track, and don't hesitate to come back here for support, o.k.?

, Jill 

Hi Jenny -

I'm sorry you needed to find us, but I'm glad you did.  I had my surgeries with Dr. Scott (just passed my one year anniversary!)  and he is wonderful!  And you are headed down the right path consulting a MM specialist.  My one advise to you is dont give up hope!  If there's anything I can help you with regarding Dr. Scott or if you want to know about my experiences, please PM or e-mail me.  We are all here to help!  Good luck!

-Shari

Like everyone else sorry you and your daughter are going through so much but you are definatly in the right place. I found this website and wonderful family by pure luck after nine months of trying to find information. I did not even know surgery was an option til i met Dj and everyone here. Three weeks after finding this site I went to Stanford and had both of my surgeries by Dr. Steinberg. Dr. Steinberg and his staff are absolutly wonderful people. I have not dealt with Dr. Scott but heard he is great too and you did the right thing contacting them very quickly. I will keep you and Daphne in my thoughts and let us know how things go!

Christy

Jenny,

Just wanted to welcome you to our wonderful and growing family of MM.  I'm sorry you have had to go through this with Daphne, but you are on the right track by consulting a MM specialist like Dr. Steinberg and Dr. Scott.  They are both excellent neurosurgeons in the field in my opinion and from what I have heard about both of them.  So, I would like to reiterate what others have already said, and that is, make sure you respond quickly to this disease as time is of the essence!

In my personal experience, I was diagnosed with MM at 33 years old and thanks to one of my bosses at work, I found this website which helped me tremendously in research and finding a wonderfull support group.  I had surgeries on both sides in November at Stanford with Dr. Steinberg and have no regrets.  Dr. Steinberg and his entire team were very professional.  

Please feel free to contact me if you have any questions.  But please know anyone on this board is here to help.

I will add Daphne and your family to my prayers and hope that you find our family here of comfort to you.

God Bless and contiued  

Michelle