And, uh, well, I just wanted to say hi? I'm guessing I'm going to be spending a whole lot of time around this site educating myself in the near future, and I might as well introduce myself!

I literally just got back from my neuro's office a couple hours ago. Long story short, I (as a 28 year old Caucasian female) originally presented to him with headaches, and several short TIAs involving extreme weakness in my right arm/leg 2.5 months ago. I was also having less intense intermittent weakness in the right arm/leg on a much more frequent basis, but that has since stopped. There haven't been any more TIAs either, thank god. <knock on wood>

Many CTs (normal), MRIs (generically abnormal such that they matched my symptoms but apparently gave no other clues), blood tests (normal), an LP (normal) and finally the cerebral angiogram later, I just got my diagnosis. MM. I can't remember which artery (the middle left one?) that was (completely) blocked, but apparently the classic "puff of smoke" was clear as could be. Through all the tests we've also realized my BP is also high, with my right arm BP consistently higher than my left.

Oiy. I left my neuro's office with the impression this (the MM) wasn't such a big deal, but that could also have been my brain chose to interpret things, I dunno. I have a blockage, but new vessels grew to replace it, so whats the big deal? What's this stroke talk?

But being the geek I am, the first thing I did when I got home was put google to work. And hence, here I am. Thank you for this miraculous collection of info, btw. To be honest, however, to say I'm overwhelmed, freaked out and scared right now is an understatement. Given that, I'm already really grateful to see there's such a great group of people here who understand what all this is about and are allowing me this opportunity to vent! I'm not quite sure how to handle explaining any of what's going on to the BF or my parents quite yet...

I'm not sure what my next steps are. My neuro has referred me to the head of the stroke center at Vancouver General Hospital, so I guess I need to see what he has to say. I know I'm not going to sit around and wait for a stroke or bleed, however.

Sorry for the long post; once I get started, shutting me up is apparently hard to do!

Tammy

Hi Tammy:
It is a very scary thing to have all of this thrown at you. My 17 year old daughter has moyamoya, she was diagnosed when she was 10 years old. She had two strokes at 9 and 10 months of age. At the time of the strokes they kept telling me there was nothing  else but boy were they wrong. She had two surgeries at the Hospital for Sick Children in Toronto, Ontario in 2000. It is good that you are trying to learn as much as possible about moyamoya, it makes it so much easier, I find, to deal with the doctors when you know what you are dealing with. This is a wonderful site with alot of supportive people. If you are not satisfied with your doctors opinion it never hurts to get another one. I'll be thinking of you.
Tricia

Tammy no need to apolize for speaking up it is overwhelming, scarey and all of that. You should she some of the posts i put up last summer when I first came here.

Welcome, to the MM Family, sorry your here but glad to hear from you. It sounds like your on the right track, DX is the biggest hurdle, at least it seems to be. I am assuming you figured out the answers to your stroke and bleed questions and that the other vessels forming are smaller weaker vessels. Thats why they are at risk.

The good news is that the procedures work, Robert had surgery (sta-mca bypass or direct bypass) 6 months ago by Dr. Steinberg (you will hear his name again and again) He is doing excellent, at the hieght of his spells he was having headaches and the works 3 times a week, full blown TIA's 1-2 a month since surgery he has had no tia's and mild headaches.

Dont stop advocating for your health, question all your doctors find out their knowledge before moving on. Find a surgeon your comfortable with (getting the idea). We had a couple surgeons that had never done the surgery before trying to do the surgery on Robert. If not for this site we wouldnt have known the questions to ask to find the the truth.

If you have any questions dont hesitate to ask, almost anyone of us will give you the best answer we can or help you find the person who can answer it.


again welcome, you are in our thoughts and Prayers
Mike

Tammy,

When the doctor told me in the emergency room that I had bleeding in the brain, my first words were, "so its not serious then?" He almost laughed. I guess its hard to comprehend when its happening to you. 7 years later, I still have difficult moments accepting the MM DX. I had an indirect bypass in 2000 with no problems since.
 

Hi Tammy,

I know what you're going through.  In 2005, I was 25 years old when I was diagnosed and had my surgery.  I had 5 strokes in August and by the end of September I had my surgery with Dr. Steinberg.

I could write forever about what I went through but that would take forever.  If you want to talk, you can call me at 011 49 711 72 69 997.  I'm an American, living in Germany.  I don't know where you live but there's a 6 hour time difference from the east coast.  With that being said...if you need or want to talk you can call me anytime.

Monica

Hi Tammy,
   Welcome to the mm family. We have all felt the same emotions you have and for me I still do sometimes. I am 55 years old so this disease hits all ages.
    I was DX in 2002 after a major stroke. Was sent to the University of Iowa. They did a cerebral angiogram and fould I had two aneurysms and mm. They also described it as a "puff of smoke".
    I was being treated for high BP and TIA'S has far back as 1997. My family DR. as so many other doctors are not knowledgeable about this disease.
    I had the aneurysms coiled in 2002 and had revascularization bypass surgery in 2003. I had one TIA six months after the surgery but none since.
    My right side was also affected by my stroke in 2002. I also lost peripheral vision on the right side.
    As far as your BF and your parents knowing. It would be the best thing for you to is tell them. Family support
is one of the best things you can do to get you thru this.
I don't know what I would with out mine.
    If you would like to vent your feelings I am here for you. My e-mail address is on my profile.
     Take care and godbless, Sharon

Tammy~

Going thru all the TIAs and diagnosis is a tough tough thing. Glad you're smart and got onto mm.co.
Hope things go well for you.
Lots of love and support in this New World,

Love
Linda A (LA)

Hi Tammy,

It looks as though you've gotten plenty of advice and support from everyone so far, but I thought I'd add my two cents' worth.  I was diagnosed back in '04 (was 28 yrs old, too) and I somehow missed this website until this past March.  I have to say I am not totally sorry I was uneducated up until recently.  I didn't realize how serious MM was until I read some of the the stories on here, and I can imagine what is going through your mind, having just been diagnosed.  But know that everything will work out just fine.  I've just had my second surgery and I'm told I'm "good as new!"  The great part is I actually feel that way! There are tons of people praying for you and sending good thoughts your way--take comfort in that.  If you want to chat or have any questions, feel free to email me: lbrown1314@aol.com

A big welcome to ya!

I got my dx July 06......then had STA-MCA double bypass's done at Stanford end of August 06.

Heading into 9 months post surgery...and overall much better. I still have a lot of my existing sx's....but my brain clarity is sooooo much better! I am able to function for long hours now....I can get a lot accomplished. No more waves of relentless fatigue.....and fuzzy brain!

That alone....is worth the surgery! Let alone the constant fear of living with an extreme stroke risk....which is now....no longer an issue!

Hang in there....hugs.....Diane : )

Hello Tammy,

I'm sorry you have Moya Moya.  You are at the right place.  This site saved my wife's life.  I'm the rather blunt one on this board.  This disease sucks but there is a correction for it, unfortunately not a cure.  If it is not corrected it leads to death.  Don't wait on this disease to see what happens.  See a moyamoya specialist.  Get an opinion from a moyamoya specialist.  Send your films to Stanford.  My wife never had a stroke and now has a less chance than I do.  She's lucky and so are you.  Talk to some people that has had a stroke.  I'm sure you don't want to be in their shoes.  Ask them if they knew they had this disease before they had a stroke if they would get it corrected.

I don't comment on this board much anymore.  I look at it every once in a while.  When I do, it is always dissapointing.  Someone's diagnosed, the doctor that diagnosed them doesn't know the disease, they find this site, they ponder, they wait, they finally go with everyone's advice, they get a second opinion, they have surgery, they recover, and thier okay.  What you don't want is a line added in there that you had a stroke.

I don't mean to scare you or anything.  It's just reality.  My wife had new vessels that went around the blockage. They didn't work real well.  Her story is on page 7 on this board.

I pray every day for people on this board.  I'll pray for you.

God Bless,

Jim

[smiley=beer.gif]