Hello Tina, I am so sorry that your family are going thro  a stressfull time right now. I am new to this site too and can assure you that there are some great people on this site with a lot of experience who will give you lots of very good advice and support.

My little girl Lydia is 9 and she was diagnosed 2 years ago after having 2 strokes and since then she has been on a calcium channel blocker and asprin and has had no further strokes and is doing well, as to an operation, Lydia is being assessed for that but I know that most on this site who have the revasculization surgery are doing well.
As to it being hereditary, well in some case it is but in Lydia case it has been due to possible other factors(cranial distress at birth being one of the thoughts)...I wont say too much more as there are others on this site with far more knowledge than me !!!but I just wanted to say my thoughts are with you and you will get so much support on this site

Love Louise

Hi Tina,  

Welcome to our MM family. I’m sorry to hear you had a difficult road, but you’ll find many others here who traveled that road as well, and they're wonderful people, willing to help you in any way they can, with support and information to help you and your family get through this. You’re right, it can be very scary, but that's why Shari said, Read all you can. That's the best way to start. I never tire of emphasizing, “learn all you can”, because it’s so important. The knowledge is comforting in of itself, because it will help you in knowing you’ll be making informative decisions, when so little in the medical world know about this disease.

Shari is right; it’s always a good idea to get a second opinion. We’ve learnt that not all doctors have experience with MMD to know the best route to take. I don’t know your sister’s specifics, or if her doctors have the experience or not, don’t get me wrong, but our advise is always to get a second opinion with a MM expert, one who deals with MMD on a daily basis, because of the many we’ve seen who were told to wait, and unfortunately had devastating strokes, as it was with my niece. All you would need to do for a second opinion is send a copy of her films to an MM specialist; it will confirm IF you’re on the right path, and go from there.

As far as your question about her twin sister, first let me say, the cause of MM is unknown, BUT… researchers suspect a genetic link. There is evidence in studies to suggest a possible hereditary, congenital component. I too am an Identical twin, (although I do not have MM) but I was always told that Identical twins are genetically identical, so that would lead me to believe, if one has MMD, it’s all together possible that an identical twin could have it as well. Also, as Shari said, we did have a set of identical twins here that asked that same exact question. The other twin was tested and did in fact have MM as well, with no symptoms, if I remember correctly. Now you see why learning about this disease is so important. It can only help you.

I looked up the threads on the twins. You may want to read about it, incase you want to contact them with any questions.

Laura twinA
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1106159898;start=0#0

Twinsmom, who also have twins with MMD:
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1111076503;start=0#0

Please feel free to ask all the questions you want, and know your sister will be in our thoughts and prayers.

God bless,
Mar

Hi Tina:

My son Brian had a major stroke in June 2000 and the neuros here in Phoenix wanted to wait and see what would happen next. Well, guess what, he'd have been dead a long time. We sent his records to Steinberg at Stanford and were told he had advanced moyamoya, both sides. He had surgery that August, and the MRA he had the following year showed that both carotid arteries were totally gone. So much for the wait and see technique.

Please get a second opinion. Brian had some serious complications and they operated anyway. Recent research indicates that there may, in fact, be a hereditary component.

I also do not understand the use of blood thinners. To the best of my knowledge, moyamoya strokes are hemorragic as versus clot based. Does anyone have further knowledge in this area?

Our best wishes to you and your family...........Kathy

Hi Tina,

Welcome to our moyamoya family. Please know we are here to support you and your family.

You have been given some very great information and resources.

My brother has moyamoya and I was concerned I might have moyamoya too even though I am not a twin.  It may be very different for a twin.  Mar provided links to twin information.  I was told that the probability of me having moyamoya was less than 10%.  Again, we all are adament about learning all you can about the disease and getting second opinions from moyamoya specialist. I learned from my experience not to leave any stone unturned. There is information on the message board regarding moyamoya specialist that may be of help to you. Like I said, it could be different for a twin in terms of being hereditary.

Also, Jenny spoke about the possibility of not having to wait for treatment.  My brother had already had a significant stroke and was in very bad shape when he presented at Stanford Medical Center in Palo Alto California and had double direct bypasses when no other doctor would even consider surgically treating him.  Again, the best advice is to learn all you can and seek the opinion of a moyamoya specialist. By the way, my brother is doing exceptionally well.

Congratulations to Tracey and family on the birth of Adam.

Tina, we're glad you found us even though we wish it were under different circumstances.

Sincerely,

Lore