Hi All,

I'm new to this board so I may have missed this info elsewhere.  I was just diagnosed with MMD in Oct of 2007.  I found an article online about a moyamoya center at Washington University in St. Louis.  A neuroradiologist there, Dr Derdeyn has gotten a large grant to do a five year study on adult moyamoya patients.

This has been good news for me because beyond the initial MRA and angiogram, my local doc's have been having a hard time determining the best way to do a blood perfusion test for me.  They finally set me up for a CT scan but again according to several 'expert' medical imaging doc's I've spoken with, without technicians or radiologists experienced with moyamoya, the CT would be of limited use for quantitative blood flow measurement.  Also there's some discussion among medical journals now, as to the relative risks vs benefits of CT scans (hundreds of x-rays of one spot).

Anyway, long way of saying, I will be getting a PET scan and some MRI's done this week in St. Louis for free as part of this study.  This allowed me to cancel the CT scan scheduled locally and since it's paid for, I didn't have to fight my insurance company over this testing.

I'm hoping the perfusion test will help me decide whether to head out to Stanford or not.  Well, maybe not whether to have surgery, but whether to do it now or later. 

If you would like to see if you qualify for the study, Mary Cantanzaro's email is catanzarom@mir.wustl.edu.  She is the nurse organizing the patients for Dr. Derdeyn's study.

Can't say I'm glad to be joining this club, but I'm glad the club is here.

-M from Madison

STrantas wrote on Jan 17^th, 2008 at 9:13am:

Amen sista! I know what waiting can do and what this disease is capable of. If you have MMD, a stroke is coming, you just don't know when. No matter what the test tells you, it would be very wise to contact Stanford for Dr. Steinberg’s expert opinion.

Mar

I know this is an extremely sensitive issue to people who have had to see their loved ones go through a debilitating stroke, which I have not done.

That said, I don't think anyone new to this disease should be told that everyone with the diagnosis should have surgery right away.  Each patient needs to look at their own circumstances and symptoms.  The disease is very different in different people.

I can only really speak to my own situation.  I'll describe my experience here as an example of what I mean.  I had a small vision loss in 2006. The next four months (MRI and lumbar puncture) showed some small brain lesions (strokes) and we ruled out Multiple Sclerosis.  I was put on a baby aspirin and told to follow up with an MRA a year later.  In 2007 NO new lesions were found so no strokes in a year, but this time they noticed the narrowed vessels.  We did an angiogram and found moyamoya in Oct.  I figured out pretty quickly that my local doc's didn't really know what to do with me.  I started doing research through the internet and doctor friends and read a lot of medical papers and opinions on moyamoya. 

I knew from my angiogram that my internal carotids were completely shut off, that I did not have as many moyamoya vessels as is typical with this disease (less to break since these vessels are delicate) and that my vestibular arteries were quite large and that I was getting a lot of collateral blood flow to the brain.  But to really know if my brain was in distress, I needed a blood perfusion test (like DJ's SPECT test.)  None of these factors guaranteed that I wasn't going to have a major stroke any day, but they all made it less likely for me than another patient with a different set of circumstances.

I have utmost respect for anyone that has gone through this process and who is going through it right now because beyond being faced with a life threatening disease, you are also in a position of having to become your own expert in this disease and making some very difficult risk/benefit decisions that don't have a lot of data out there to support them.

I understand that I am taking a risk by waiting, but I think it's important for me, given what I know about my own situation, to have all the data before I decide to have surgery.

Thank you all very much for your genuine concern for a fellow sufferer.  I know your advice comes from a very good impulse to help other people avoid what you've had to endure.  I'm hopeful I won't have cause to regret my caution.   

M-

I felt the same way as you did when I first joined the board.  I came here for information to make my own decision in my own time.  But for me - the fact of the matter was, as I gained that knowledge, I felt like a ticking time bomb.  I was also told that I had a "silent" stroke sometime in my past...and then I had a mild full stroke which led to my diagnosis.  I also knew that I was having TIA's more progressively each day.  So, if the first stroke was silent...the second was was mild...that led me to believe that if I had another one - it was going to be more debilitating.  And guess what?  I did - I had a third stroke and it left damage this time. 

We just don't want that to happen to you.  My situation was not accute.  I didn't have the surgery right away....but I did go see a specialist right away - and I was scheduled for surgery by the end of the next month. 

What we don't want you to do is take a "Wait and see" approach.  I'm not trying to scare you in to surgery.  The fact is, everyone's situation is different...but we all have MM...and it could, Could, inevitably lead to stroke or hemmorage.

Please arm yourself with as much information as you can and take into consideration what those who have been there are advising. 

-Shari

Like most people who hear conflicting medical opinions, I agonized over whether surgery was the best course of treatment for my MM.  I was initially told I didn't need surgery, then told that surgery was "risky" and "without good long-term results," then told maybe direct bypass surgery wasn't the best option for me...there were, afterall, other types of surgery available.  But all the doctors I consulted agreed on two points:  1.) MM is a degenerative disease that only gets worse, and I would eventually have a stroke(s).  2.)  There was no way to know when it would occur or how severe the resulting stroke damage might be. 

Although I'd apparently already had a stroke, I was fortunate enough to be diagnosed before any permanent damage resulted, but I'd watched my grandmother struggle with the aftermath of several  strokes and I wouldn't wish that on my worst enemy. 

When I found moyamoya.com, and read the heartbreaking stories posted on the guest page, it was quite sobering.  I read every web link I could find about moyamoya, and educated myself on the treatment options.  I did not want to have brain surgery if I could possibly avoid it...the prospect scared me.

Ultimately, having bypass surgery was a very personal decision, and one I came to believe would give me to best chance at a "normal" life. 

Once I had made the decision to have surgery, my goal was to be treated by the most experienced team of doctors available...I just had to convince my insurance company that Stanford made sense.  It was "do-able," especially since I live less than eight hours away.  As an added bonus, they were willing to work with my insurance company to draw up a treatment contract. 

I realize Dr. Steinberg is not the only doctor to have successfully treated patients with MM, but he has a well-documented track record and does extensive followup with his patients.  I was impressed by his staff, and by his dedication to study the long-term results of the surgeries he performs.  There are surgeons who do no followup at all with their patients whatsoever, so it may be difficult to know exactly what their track record is. 

I am now approximately 10 months postop, and doing much better.  Although not completely gone, my symptoms have improved, as has my quality of life.   

I posted this only because sometimes it helps to know other people have been there and can relate to the struggles you're dealing with.

Best of luck to you!