My sister was diagnosed last Thursday at Wake Forest in North Carolina after a difficult road to find out what was wrong with her. She is 26 and had her first baby [smiley=baby.gif] on 21 June, a little boy Adam that is doing GREAT! She started having numbness in her face and hands at the hospital which she was told was due to the epidural. And it just kept getting worse from there. She had been told she had everything from low iron, Bell's Palsy to post partum depression. She had CT, EEG and MRI less than two weeks ago and all were negative. But she got really bad last week and my mom and her husband took her to the ER last Tuesday and another CT scan was done that showed she had a stroke, so they transferred her to Wake Forest where further testing (MRI and  cerebral angiogram) was done that confirmed the moyamoya. She had not one, but 6 strokes, five mini and one major. They said she is too weak to get the surgery and are going to re-eval in 6-8 weeks. She is on blood thinners though and hasn't had anymore strokes that we know of, so we are trying to remain positive. Question for you though, she is an identical twin, should my other sister be tested too? Dr. Reynolds at Wake said no because it's not hereditary, but from what I've read there isn't allot of info on twins. This is truly the most scary thing my family has ever gone through. She is being transferred to a acute rehab center soon to help her regain some back after her strokes.

:)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 the MM family, although I'm sorry you had the need to be here.

First, congratulations on your new newphew!

Second, that is wonderful that your sister was able to get a definitive diagnosis.  However, as a support group, we highly urge your sister to get a second opinion with a moyamoya specialist.  It is very common to hear that doctors want to take the "wait and see" approach, but MM is a progressive disease and your sister is at risk for a more debilitating stroke.  Mini strokes (TIAs) are warning signs for something more serious.  I don't mean to scare you, but your sister is much better safe than sorry.

You or your sister should read, read, read as much as you can on this board.  I urge you to visit the surgeons page (http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=surgeons_board) to get a second opinion.  Also, check out the "Links" page (http://www.moyamoya.com/links.html).

As for your sister's twin.  I have heard of twins both having MM and other where only one has had it.  Again, better safe than sorry.  I would have both sisters checked out.

Please know that we are here to help you and offer you support.  Good luck to you and your sisters.  Please keep us posted!

-Shari

Hi Tina,  [smiley=wave.gif]

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

Hello Tina!  

I'm glad you have found our support group here and please know ahead of time that Tracey will be in our thoughts and prayers.

As you've already heard, it is VERY IMPORTANT that you get a second opinion from a MM specialist because there is a good chance that they would be able to do the surgery.  Just let me share my personal story.  I was diagnosed with MM in October 2004.  I had a consultation with a neurosurgeon here in the DC area, but was not impressed with how that went.  He also, has done some MM surgeries, but is NOT a specialist.  He told me in that consultation that he did not want to do the surgery while I was having active TIA's and would see me again 6 weeks later to reevaluate.  It's a good thing that I had this board to get advice and support as it turns out that those words are just not true.  MM SPECIALISTS CAN DO THE SURGERY WHEN YOU ARE HAVING ACTIVE TIA'S.  

My scans were sent to Dr. Steinberg in California and it turned out that I have MM on both sides and he wanted to schedule the surgeries as soon as possible.  I was on the verge of a major stroke and it was good that I had the surgeries when I did.  

There are some people on here that have had strokes and have had the surgeries.  So, I urge you to get that second opinion.  You would be amazed at what the surgeries could do for Tracey.  

Take care,
Michelle

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.

I think you've already gotten some great advice, and would agree with what others have told you about seeking an opinion from a moyamoya specialist.

I also wanted to add that it may not be true that your sister needs to wait for a re-evaluation.  My daughter suffered two major strokes in the beginning of this year (she was 15 months old), and we were told that she was not a surgery candidate because of her fragile health.  Daphne left the hospital on palliative care, and could not turn her head, suck her pacifyer or even make noise when she cried.

We got second opinions from Dr. Scott and Dr. Steinberg, and Daphne had two indirect bypass surgeries just six weeks after her strokes!

Daphne had already been severely developmentally delayed before she even had her strokes; but today she has regained about 90% of the abilities she had  before her strokes, and has gained other skills that she didn't have before.

I hope your sister continues to make a recovery, and that she is able to get the help she needs.  

Jenny (mom to Daphne.  www.daphnestory.com)

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