I will be my own first reply:

Emily, female, age 34, OPTION C

She had no previous symptoms, TIAs, etc.  Had stroke on 6/5.  Recovering well, and she is on Plavix.

Hi,

I had an emergency double bypass and EDAS in March 2005.  Prior to surgery, I had many TIA's.  Since my surgery, I have had great results from numerous MRI/MRAs, CTs, angiograms (2), and EEG and Perfusion study tests.  Thank God!



Hope this helps~

Take care,
Shan

my daughter is 16 had surgery in April

Option A, was told by her neurologist we should wait and see if she had another stroke or seizures.  I saw this website and contacted Dr Steinberg, her recommended bypass.  I agreed and she is doing wonderful now, much much better.  Get the second opinion, you'll be glad you did.

Margaret

I personally think this poll is RIDICULOUS! It will prove absolutely NOTHING! Every MM case is different and unique to each person, due to each person’s individual factors involved, so technically, it doesn’t matter what others had, or what complications, or any of that!! One blood pressure could be higher than another’s, or one MM case may progress faster than another, etc. I could go on & on as to the difference’s each case could have. THE FACT IS surgery is the mainstay treatment for MMD to avoid stroke/hemorrhage or death PERIOD! So those doing nothing and taking the “wait and see” approach are taking the risk of stroke or death, END OF STORY, and those who had surgery have lessoned that risk dramatically! The latest research is, the long-term outlook for those that had successful surgery is excellent!  So, what’s the point of any poll?? I don't get it!?!

In fact, there is NOT even such a thing as an option C or D with a doctor that’s experienced with MMD. Again, the facts to date are, there is NO such thing as MEDICAL TREATMENT!! NOTHING will stop the MM vessels from developing or the disease from progressing!! Those options are those of an inexperienced doctor, PERIOD!

So again, what’s the point of the poll?? This guy just doesn’t get it. No poll or anymore advise is gonna help this poor woman get the treatment she deserves.

I agree Mar.  This poll is Absolutely ridiculous!!!  Surgery is the only way to go.

Lisa
(Husband coming home today from surgery and is doing awesome. )

I also agree with Mar. The circumstances for every person with with this disease are so unique. Basing such a critical decision on the information attained from a poll is ludicous.

Surgery isn't easy - it takes a lot of courage. It helps tremendously though when you have complete confidence in the neurosurgeon. You shouldn't give that trust to someone simply because they profess to be a moyamoya expert or because they happen to be geographicaly convenient. Do the research, find someone with experience and a high success rate. Then get the job done.

The quality of life is a whole lot better post-surgery.

Kim

Removed post... and will keep all opinions to self

Feel free to delete all my posts...

I cannot win...all I was trying to do is get more information to help me understand why the doctor was recommending this direction for my wife.

Hi all,
I haven’t posted in awhile but I felt this thread required one from me.  I have caught up on all the posts, and hope my 2 cents will add some value (though I heard the 2 cents really cost more these days LOL).  

JeepNerd,
I just read DJ's post and I do think you are trying to justify  your approach, not necessarily in your poll but in your other posts.  However, I read your a poll as an information gathering post.  I doubt you will find many who are of the C & D options, if there are any out there, especially on this board, but I’m sure you were well intentioned.  I think you should continue as you have been to read as much as you can (and not just on this board) about this disease and what you/your wife should do.  I know at this difficult time, it is hard to always think clearly (I was very lucky – I had a brother, a doctor, who did most of the thinking for me and a mother who did all the worrying for me).  Take a deep breath, and let your heart guide you.  

I consider myself pretty straightforward (as much as that is allowed on this board ), and thus, I do want to say in regards to Mar, that though she and I have sometimes had differing opinions in the past (about how things are said vs. what is said), she is very well intentioned.  She is very passionate about her views, and she is number one looker-out-er (if there is such a word) for everyone’s health on this board.  She has done her homework and posts the most informative information out there for newcomers (especially when some of us would like to but never have time to).  

The reality is there is no cure for MMD.  You can still die of a stroke, even after having had surgery.  BUT it is the most optimal TREATMENT out there.  You are correct, that full blown clinical studies haven’t been done on this.  But I don’t see this as possible, as who wants to be a guinea pig?  There is a study at a major university here in NYC – I was asked to be a part of it and the neurosurgeon there said I didn’t need surgery.  Long story short, I didn’t want to be a case study.  I had the surgeries elsewhere, and now I’m an anomaly in their case study.  Was it worth it?  I still have some symptoms but they’re milder and I also see improvement in other areas.  It was 100% worth it.  I don’t feel like a ticking time bomb and that mental peace was worth every “penny”.  It all comes down to risk.  How much of your wife’s life are you and she willing to risk?  

I hope this eases your mind.  This board should be a place of support – if you have more questions or concerns, please don’t hesitate to air them, whether privately or publicly with anyone.  I’m sure those who seem like they are being aggressive are not intending to be so except to explain the need for a very aggressive approach to help your wife.  That is what you came for, and that’s what we’re all here for.  

Best wishes,
Trina

Yo.

I am Emily also! (duh). Now aged 26 (how is that possible?) First diagnosed Oct 2005, aged 23. After having a month of several strokes and millions of TIA's I presented to hospital, stayed in for 2 weeks, on heparin drip, as I was thought to be quite high risk. Had first STA-MCA (left side) 1 month after diagnosis. Was wobbly for about a month and a half, had second STA-MCA (right side) 5 months after the first one. have had a few of very minor symptoms since then over the years. Have been on plavix and aspirin daily for years (had about 10 months off plavix but been back on for 9 months, might go off it again soon).

So yeah I am mostly A, bit of B.

Apart from taking my meds every night, I pretty much ignore the whole thing most of the time. Works for me mostly!

JeepNerd, people can post their own information if they want, but a "running total" with names and symptoms posted by a third party will not be allowed.

You are more than welcome to compile your own decision making matrix from responses, but let people speak for themselves.

DJ

JeepNerd wrote on Jun 30^th, 2008 at 10:43am:
Actually I'm A. No med treatment, and I've had numerous TIAs which has left me with bad short-term memory and minor physical impairment. I have also been diagnosed with heart disease a couple of years ago, and have had stents inserted in a few coronary arteries. I've been on Plavix and aspirin therapy. My doctors are convinced that clots are a bigger danger to me than hemorrhage.
My brother, who also has MMD, had the same surgery I had in 2001. His docs were concerned that he would have a hemorrhagic stroke or event, due to his history, and he had a major ischemic stroke in October, blowing out the left hemisphere totally, leaving him a vegetable. Surgery is no guarantee of future events, but it does reduce the risk.

JeepNerd,

I do think something is getting lost in your translation.  While I appreciate your need to organize your thoughts and present to your doctor "evidence" of who has had surgery (clearly your unscientific poll shows that there are not many, if any, that haven't had surgery), I think it probably doesn't make sense to mark people as "A" or "C".  I'm one of those (I don't remember what your options stand for) but as DJ says, everyone is different.  We are not a scientific population.  (Not to mention, I never really answered your question and your designated option is incorrect). 

It sounds like your wife is really down on surgery - of course she will be.  I wanted to avoid it too.  But in the end, all the evidence pointed otherwise.  By the way, I didn't get that information on this board.  Most of my research was outside of this board.  I came to this board after I made my decision.  It just turned out most of them supported my decision. 

I agree with DJ - let's not make this a calculation on which way to go for your wife.  Ask the right questions and go with your heart.  It is my opinion that it should be instinctive.  I was in a cloud of gray until one doctor said, how long do you want to wait before you have another stroke, which next time could kill you if not leave you permanently scarred?  That should give you your answer right there. 

Again, I do not think the posts here are meant to be obnoxious towards you.  I gathered from at least one of your posts that you are listening.  I just think some of your replies seem to indicate that you are not and that is frustrating some.  Just forget about the "poll" because I think that is becoming a central point of the discussion when really, it should be about your wife's health and what to do.  And you will learn that from hearing about people's experiences and not what option they are. 

Best regards,
Trina